tag:blogger.com,1999:blog-11203304726248464272024-02-20T19:09:03.408-08:00 Live Your LifeLiving my life with Cystic FibrosisJohttp://www.blogger.com/profile/16357685879870224545noreply@blogger.comBlogger118125tag:blogger.com,1999:blog-1120330472624846427.post-45631779661447742742016-10-01T11:28:00.003-07:002016-10-01T11:28:50.245-07:00Charity events!It's been a weekend of generosity. It's always lovely to share good, uplifting news!<br />
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On Friday night my 2nd cousin Suzie and her family organised a quiz night and a head shave. They raised an amazing £315 (and counting) for the CF Trust and a brilliant £145 for the CF Unit at Frimley Park. Suzie's husband Matt donated 6 plaits for The Little Princess Trust too! A truly giving evening, thank you!<br />
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Matt before</div>
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Matt and Suzie</div>
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Today, with the help of my wonderful family and friends, we managed to pull off the charity auction. I wasn't well enough to attend, but me and Alex was there via a Skype link. I had 32 lots generously donated: from pet portraits to weekend breaks. My dad and nana organised cheese and wine for our guests and our church kindly let us use their cafe as our auction room. Derek, our friend and auctioneer did a brilliant job and kept up the momentum and fun. My brother Tim whipped round collecting moneys and my cousin Ashley kept check on what sold for how much. My dad and I had done a presentation to go along side the auction, to advertise the lots and to give some information about the CF@FP charity. </div>
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It was great to watch via Skype and we had a good turn out of friends, family and the congregation of our church. My uncle Ian's arm must have been aching by the end of it, having to hold up the iPad for an hour! </div>
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We raised an incredible £1435, not including gift aid, for the CF Unit; I'm so humbled by the generosity. The auction has been a focus for me for the last 3 weeks and has helped me escape CF and the hospital. I can't thank everyone enough for helping me do this, I literally couldn't have done it without you! I want to come and give everyone a big hug, kiss and take them out for dinner as a thank you; may take me a while haha. </div>
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Timmy</div>
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Cheese!</div>
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The presentation</div>
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Derek our auctioneer</div>
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Until next time! xo</div>
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<br />Johttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com2tag:blogger.com,1999:blog-1120330472624846427.post-85363531119260136972016-09-29T11:18:00.003-07:002016-09-29T11:18:57.082-07:00Evening postEvening all! I have an hour alone so thought I'd try and write a blog post; get some things out of my head. It's been about 10 days since my last post and my family and I have got into a good routine now that seems to work well.<br />
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At 8/8.30am dad arrives to help me start the day. Bless him, he is so supportive, patient and just the best dad you could ask for! Some mornings are hard and painful, some are better and we can actually have a conversation. Either way, dad is there smiling, comforting and holding my hand every step of the way.<br />
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My aunty Linda then arrives around lunch time and we have a catch up and do exercises together. We focus on legs, arms, pelvic floor and flexibility. It's great to have someone to exercise with who motivates you everyday, even if all you want to do it curl up and sleep- that won't build muscle now, will it!<br />
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Dad leaves around 12.30 and it depends on Linda's day as to when she leaves. Alex is next to come up to help me; sometimes we just sit in silence as I'm so tired and find it hard to talk. We usually eat a snack together and watch something on Netflix.<br />
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Then my mum and siblings usually come up in the evenings to see me and help me get ready for bed. It must be hard for them as they have just worked a full day, then driven all the way to the hosp, but they still do it and I am so grateful! We do my meds, try and have another snack, wash and teeth cleaned and get me comfy for bedtime.<br />
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I try to get the best night's sleep I can so I am ready to start all over again the next day. My dad says that for now we must just take it a day at a time. No big plans for the future that are unattainable; just one day at a time.<br />
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With CF, and I'm sure other illnesses, you have "good days" and "bad days". The last 3 days have been "good days", which is encouraging. I have had a lot, lot less panic attacks, no temps, and have been eating and exercising well.<br />
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For a while I had asked not to be told my numbers: CRP, lung function etc. That's very unlike me. I usually want to know all the information I can. I've just been too scared to hear them and if I knew them and they weren't good, I felt it would just make me so upset. I'm breathless enough without adding in crying! Today though, Emy asked if I wanted to know my CRP; I said yes. She told me that on Sunday it was 332- WHAT?! 332?! I was admitted at half of that! How had it spiralled so badly out of control?! Not cool!!! Then she got today's CRP and it has thankfully come down to 27-something. Still no where near good, but at least it is is coming down.<br />
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On the plus side, I have managed to put on 2kg of weight in the last 5 days! I'm determined not to have another NG tube after that disaster.<br />
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There's still a lot of work I need to do in my adjustment of life; I've accepted that, for now, my life is going to be very different from what I had hoped. Until transplant, then I can get back on track! The two main things are eating without getting so breathless and not being so scared to be on my own. It's only in the last few weeks that I have started to become uneasy being alone; I think it's because I feel so out of control at the moment. I can't control my breathing how I used to and the breathlessness makes me panic and a vicious cycle starts. I just feel if someone is with me they can hold my hand and tell me to take slow breathes and that it will be ok etc. I need to build my confidence.<br />
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Finally, it's my first charity event this Saturday at Ruxley Church at 2-3pm. It's an auction with lots such as reflexology, gardening, weekend breaks, baby sitting, paintings.... If you're around, come along! Cheese and wine provided :) All the money will be going to the CF@FP charity, which supports the CF Unit I attend.<br />
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https://www.justgiving.com/fundraising/Jo618<br />
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Until next time! xoJohttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com1tag:blogger.com,1999:blog-1120330472624846427.post-31761205080570593642016-09-20T13:20:00.000-07:002016-09-20T13:23:27.958-07:00Blurred linesThe NIV/BiPap is working well. The machine that assists me breathing so I can get some rest. It takes a little while to get used to, giving over control of something so vital as breathing to a machine; but once you get into it and let it guide your breaths, you can really relax your body. Parts of me that I feel I haven't relaxed in years: my shoulders, neck and back. Due to this I didn't need to go to MADU for IV Aminopholin and was able to spend my birthday on the CF Unit.<br />
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I had a wonderful day and was thoroughly spoilt with cards, gifts and love. After a slow morning (mornings are usually bad anyway so it wasn't a big deal), the CF team surprised me with a card that they had all signed and a big piece of chocolate cake. They all sang to me too, they are just so lovely here! Alex, his mum Tracey, my aunty Linda and uncle Ian came up in the day to spend time with me and gave me gifts. Alex and Tracey started working on the party they are organising to raise money for the CF Unit too. In the evening my mum, dad, brother Tim and his girlfriend Emma came up and we opened gifts and laughed lots. It was a really special day and I am so grateful for the wonderful family I have. I was blessed with thoughtful messages of love and well wishes on Facebook and by text too; thank you to those who took time to write me a message.<br />
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Me, Alex, Tracey, Ian and Linda</div>
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Nana and Papa</div>
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Me and Dad</div>
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Cake and card from the unit</div>
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Me, mum and dad</div>
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Alex bought me a Pandora bracelet and dog charm</div>
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Happy birthday to me!</div>
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I met with the palliative care team last week too. Before meeting them, I understood "palliative care" to mean care for people close to death. That may sound morbid, but that's what I thought it was. They introduced themselves and explained that yes they do aid people who are close to the end of their lives, as well as do a lot of work with cancer patients and also helping people who are living with an illness, such as myself. They help to make people comfortable. My 3 issues that I really wanted help with were nausea, breathlessness and anxiety. They were so helpful in thinking up suitable drugs for me and explaining what each do. Most were things I have had before such as anti sickness meds and oramorph, but the new thing I am on is an anti depressant. I'm not on it due to depression, but a low dose of the med helps take the edge off anxiety, which is really what I am needing! It's strange how I am now getting so anxious over things. It's a horrible feeling having panic attacks. I mainly suffer from this in the mornings when I wake up. My breathing is naturally worse due to sleeping for however many hours and not coughing and clearing my chest during that time. Then I wake and cough for ages and my oxygen levels drop and I find it hard to breathe and catch my breath. It is then that the panic sets in and it can take me a good couple of hours to calm down and get my breathing back on track. By this time I am exhausted again, but I can't go back to sleep because I need to start all my nebs, meds and treatments. So the aim is with this anti depressant drug, I won't spend 2 hours of the morning trying to catch my breath, I can spend those two hours doing other treatments and will have more energy for the rest of the day.<br />
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I have also found myself forgetting things lately. For example, my friend Ashley said we spoke on the phone last week but I cannot remember it for the life of me; and the physio said we had spoken about some oxygen tubing thing and I literally have no idea what she is talking about. Alex, my aunty Linda and the physio said it's probably because I have so much on my mind at the moment. I don't feel like I do, but I guess that is me just trying to go with the flow and not over think things. The subconscious mind is very powerful and I guess mine is likely trying to work things out for me and therefore I'm not retaining all information I hear. That's my theory anyway.<br />
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When I take my naps my dreams are so vivid that I wake disappointed that I am where I am. In my dreams I am oxygen free, running around, with friends and family, laughing, eating, just a "normal" person. Then I wake up to feel an oxygen mask on my face, struggling to breathe and desperate to cough my guts up. I feel like I have been asleep for hours and hours and look at the time to see only half an hour has passed; it's deflating and confusing for me. My head feels so blurred and foggy. Possibly it's side effects of the stronger drugs I am on now. <br />
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I was able to get out for a few hours on Sunday to celebrate my uncle Mark's 50th birthday. He is one of my uncles who ran the Great North Run for the CF Trust. It was a lovely day and great to catch up with the family. I was very exhausted by the time I left, but I'm so glad I went.<br />
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I am really trying to work on my muscles. Since being in I have lost a lot of weight and it's very apparent on my legs; they look like twigs. I am walking round the ward as much as I can and walking to the toilet instead of using the commode. I need to keep my strength up. I also need to increase my weight. Due to the nausea I hadn't been eating well at all, so we decided that we should try an NG tube. An NG tube is a tube that goes up your nose, down the back of your throat and into your stomach. Then "feed" can be put through it. Feed is like a bag of liquid that has lots of nutrients in it.<br />
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I have quite a few CF friends who have used NG tubes to top up their calories to gain or maintain weight. Some of them have even learnt how to place their own tubes and have done videos on it. So I wasn't too nervous about it and thought it would just be straight forward and an easy fix to help me put on weight. God, how wrong I was; nothing is ever an easy fix for me at the moment, I swear! It's obviously not the most comfortable thing having a tube shoved up your nose, past your gag reflex and into your stomach but this was just a disaster. It took 5 of us to get it in in about an hour. Then we couldn't aspirate it (when you draw back fluid from the stomach and test it's pH to make sure it's in the right place), so I had an X-ray, which showed it needed to go further down. It was another struggle to get it down further and I ended up being violently sick everywhere. But we got there. I was in a lot of pain at this point in my sinuses, throat and the top of my stomach. It's not meant to be painful so we thought it was just that I needed to get used to having the tube there. I was just glad it was in and hoped it would last the month that it's allowed to stay in for. Again, we couldn't aspirate it so another X-ray was booked. I was just settling down for bed when we got the results of the X-ray and the doc said the NG tube needed to come out as she wasn't confident that it was in the right place and you can't risk putting feed into other parts of the body. I was so disappointed, all that work, tears, sickness, perseverance- not just from me, from lovely Rubina, Charissa, Alex and Judith. For nothing. Rubina yanked it out quickly and suddenly all that pain in my sinuses and the top of my stomach vanished. I was exhausted and emotional and just needed to get to bed after that.<br />
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And now we are on to today. I feel like this is a very pessimistic blog post! I'm really sorry it's just there have been a lot of disasters and set backs recently. I hope it won't continue lol... so I was up at 5.30am with a temperature; I have had a morning temp the last 3 days so took paracetamol and cleared my lungs as much as I could, since I was awake anyway. I was trying to get back to sleep but pain was creeping around my chest and back. Sometimes pain is just pain and it goes in a few minutes, but this was getting worse and after about half an hour I asked for some pain relief. As I've said before, I have been very lucky not to really get any pain from my CF, so I didn't know what to do to try and relieve it. A lot of morphine later, I fell asleep about 8am, just as the busy hospital day starts- typical! My dad also arrived at about 8.30am. I managed to stay asleep until about 9am but woke in even more pain. It was uncomfortable to move and breathe, I couldn't work out why. Anyway, we carried on with the morning and during physio I was finding it hard to shift the stuff in my chest. Recently it has been very easy, so again I was wondering what was going on. Then I thought about last night; we had a bank nurse in as our usual night nurse was ill. I remember she didn't really know much about the Bi-Pap and said something about no humidifier on it. I was thinking at that point, I'm sure they had some sort of water going through it; but I didn't question her as I was no wiser myself! I mentioned it to the physio and she she checked the machine to find it had dried up. You are supposed to top it up with special water each night so that it doesn't dry up your throat, mouth and lungs. My lungs had dried up and that is why I was in so much pain and unable to shift anything. So you learn something new every day!<br />
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Emy also told me today that my CRP levels have gone back up for 138- almost as much as when I came in :( Disappointing to say the least. 2 and a half weeks in and practically no improvement, maybe even worse seeing as I have lost a lot of weight and muscle. *Sigh*, let's keep plodding on though 'ey! Everything happens for a reason, just have to have faith that it will all fall into place in the end. I WILL GET THROUGH THIS AND COME OUT THE OTHER SIDE SMILING AND READY TO LIVE MY LIFE TO THE FULL ONCE MORE! :D :D :D :D :D :D :D<br />
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Until next time xoJohttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0tag:blogger.com,1999:blog-1120330472624846427.post-80699337238011763792016-09-14T10:32:00.001-07:002016-09-14T10:32:20.334-07:00Quick catch upHello world! It seems as though I have been off the radar and off the planet for a while. Have a fair bit to catch up on but don't want to end up with another super long post, so shall try and keep it brief.<br />
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It's been a week and a half since I was admitted and in all honesty I have just gotten worse each day so far. They often say you will feel worse before you feel better, but this is getting out of hand lol. The sickness, pain and breathlessness have been unbearable; I have lost so much weight and muscle.<br />
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On Friday I asked my dad to put up a Facebook status to ask anyone except close family not to visit me at the moment. The main reason being that I don't want people generously travelling all the way here and taking time out of their busy lives just to watch me sleep! If you'd like to see that, my sister has hoards of photos she can send you to fulfil that desire ;) I am finding it very hard to talk and stay awake at the moment and just don't want to bore any of you or feel like you have wasted your time. Once I am on the mend I shall let you know and will welcome you with open arms!! I need my gossip fix haha. Thank you so much, as ever, for the love, support and for understanding my circumstances <3<br />
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I have had two of my hypnotherapy sessions now. I would have had 3 but I unfortunately had to cancel this morning's one due to ill health. It is the most strange thing ever but I feel it is working. It is almost like you are asleep, that's the only way I can describe it at the moment. Your limbs feel so heavy but at the same time you feel like you are floating. Very odd but I am enjoying it and really have faith it will work! The hypnotherapist, Helen, is such a wonderfully kind lady too and it's lovely being in her uplifting presence. Such a small world, she used to live down my road!<br />
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<span style="font-family: inherit;">I have decided to raise money for the CF Unit at Frimley (the place where</span><span style="background-color: white;"><span style="font-family: inherit;"> I am). I receive exceptional care here and I wish everyone who has CF could receive the high level of care I am fortunate enough to. I want to ensure that the unit can carry on delivering this care to all of their patients now and in the future. They rely on donations to help offer extra services such as free wifi, free parking, free TV, a snack trolley; as well as the life saving equipment. The doctors, nurses, care assistants, physios, dietician, psychologist, cleaners and reception staff go above and beyond for their patients day in, day out. I am planning on holding a few events over the course of the next year, the first being an auction where people donate and bid on services i.e. baby sitting. This auction is being held on Oct 1st. I am also lucky to have my cousin Suzie holding a quiz night, my mother in law Tracey organising a big party and my aunty Linda holding an evening where you swap plants, all for charity. Once I have more </span></span><span style="font-family: inherit;">energy I will write a more in depth post about the charity work :)</span><br />
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https://www.justgiving.com/fundraising/Jo618<br />
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<span style="font-family: inherit;">My uncle Mark and uncle Jeff ran the Great North Run on Sunday for the CF Trust. They completed it in 2 and half hours and have so far raised an incredible £1020 between them! Well done and thank you so much guys. </span><br />
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2 more paragraphs... feeling rough, need to type these then I can lay down.<br />
My friend George who had her tx just over a year ago popped her head in today. She's a naughty little minx but I love her for it! She looked incredible. She would say she looks fat, but I think she looks beautiful. The picture of health. She has joined the organ donation committee here at Frimley so was in doing bits and pieces for them. She stopped for a quick chat and it was so lovely to see her. She has said over Facebook Messenger if I ever need to ask any questions regarding tx just give her a message but I couldn't ever think of anything. Then when I saw her I suddenly had 101 questions, strange how the mind works 'ey. She was encouraging and uplifting and I felt on such a high after she left that I ate food! First time in days I had dinner :D<br />
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Finally, the next plan health wise. I am trying out the NIV at night time tonight. This is a machine that will help me breathe at night so my body can rest. If I am no better tomorrow then I have to have IV aminopholin again :( I really don't want to. I will have to move wards to MADU where I have no phone signal and I don't know the people there like I do down here on CFU. Things are done very differently up there. Also, I will have to have another power glide. Last time the Ami didn't work, so I am reluctant to go through all that trouble for nothing. It's my birthday on Friday and if I need to be in hosp I'd rather be on CFU!<br />
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That's all I can manage at the mo. Until next time xoJohttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0tag:blogger.com,1999:blog-1120330472624846427.post-46832573607864234942016-09-07T10:48:00.002-07:002016-09-07T10:48:36.155-07:00There's something I need to tell youThis is going to be the most difficult post I have written to date. The most serious. Why am I writing it publicly for anyone to read? This blog is like a diary for me and it has helped over the years to express and clarify my feelings and thoughts. It has helped me work out problems. It enables me to keep in contact and update my family and friends in one go so I don't have to repeat myself a hundred times and I can spend time writing all the facts and figures and wording things correctly so I don't miss out details. I also hope that it may be helpful and insightful for other CF suffers or people with other illnesses or disabilities. I hope that it raises awareness for CF, organ donation and other topics that I raise. This will most likely be a long post, I warn you. I need to write this as part of my acceptance of the situation and to normalise it for myself so I can have the strength and confidence to go forward.<br />
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It was about a month ago, 2nd August, when I was admitted just before my holiday to Suffolk. I had come into the unit exhausted, breathless, had wet myself on the journey, was on a lot of oxygen and generally just very poorly. I had done a poor lung function and was very upset. One of my consultants, Dr Higton came in to speak with me and my parents. I was going to be admitted. I did a post on this on Weds 3rd Aug titled "The last few weeks", but I left out information that I wasn't at all ready to accept or talk about. While speaking with Dr Higton, she came down to my level, looked me in the eyes and very honestly and softly told me that she thinks it's time to start thinking about being assessed for a double lung transplant. In that moment I completely broke down. I have never been so upset, scared and crushed as I felt then. I screamed for my mum who rushed over to hold me and I just cried and cried. I was panicking and saying that I couldn't do it, I'm not strong enough for it. It was honestly the worst moment of my life so far; not because I was in any pain physically, but emotionally I just couldn't cope. I didn't expect to hear those words. Not from a professional, not about ME. I feel I am too young. 6 months ago my lung function was just off 60%, my weight was the best I had ever been, I had huge plans for the future: holidays, starting a family, expanding my business.... This had never even crossed my mind. After a few minutes I managed to compose myself slightly. I opened my eyes, Dr Higton was still sitting there calmly and patiently letting me go through the emotions I needed to. As a CF consultant I'm sure she has had to have this conversation many times with patients and she is wonderfully professional and kind at the same time. I couldn't have asked for more from her in that situation and I am glad now that it was her who told me.<br />
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I will never forget that moment, those few minutes. It's life changing. I am glad my parents were there with me. I needed them. Even thinking back on it now to write this it brings tears to my eyes. It was so emotional for me. More so than any other situation has been for me so far in my life.<br />
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I was admitted then and had to go to MADU as the CF Unit was full. The thought of transplant was still at the forefront of my mind. I wasn't ready to talk about it yet. That evening on the ward, the woman next to me was told she was dying. There was just a curtain between us and I could hear all the conversations. I had never witnessed a death before. Alex was with me and I prayed for her. She was an elderly lady who had her son and daughter around her. She was on a ventilator and was told she could decide when she was ready to take off the mask and allow herself to die. Imagine having to make that decision. Knowing that is your only option left in the world. She was made comfortable and wouldn't be struggling in her final moments. It was heartbreaking hearing her and her children having their final conversations; she was asking them to make sure certain things were done and taken care of when she was gone. She had her favourite cup of tea ready for her and took off her mask. It took about half an hour but she passed peacefully and comfortably. The ward was respectfully silent and we only knew of her passing when her children started crying for their mother. My dad often says that God puts things in place for us to learn from when the time is right for us. I believe this was one of those instances. With the talks of transplant, thoughts can naturally turn to death. It's something I need to come to terms with and I want to be at peace with death and not be scared of it. It's something that will happen to us all eventually. Witnessing this woman's death has definitely started to put me at ease. I know now that if that sort of situation happened to me, I could be made comfortable and not be struggling. No one wants to die in pain or suffering.<br />
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The next morning I woke up in tears; something I am not used to but I needed to cry. My dad always reminds me that it's ok to get upset. For me crying is important; I cry quite a lot! More so these days. I have to remind myself that it doesn't mean I am weak, it's just my way of dealing with things at the moment. I don't usually cry for long, but I sometimes just need to to move forward in my thinking and acceptance. My dad and aunty Linda came to visit me that day and my dad mentioned the transplant in front of Linda. I wanted to tell her, I had been thinking of telling her the whole time she was there but when he mentioned it I started crying and asked him to not talk about it. I wasn't ready yet. He later filled her in on their way out and, for then, that was what I wanted.<br />
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During the rest of that admission I avoided talking about the transplant and no one in the team really mentioned it. I was constantly thinking about it in my mind, but I could do so almost in secret and in my own time and that suited me. I could work out my thoughts. During this early period, my thoughts were that I wouldn't go for a transplant.<br />
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The end of that admission was when I went on my family holiday to Suffolk. It was very much needed and was so nice to escape hospital, CF and transplant. I'm not sure who in my family knew about the transplant talks; I still don't really know who knows! I'm hoping my parent's have told my family. Again, I have avoided actually asking them to take on this role.<br />
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During the holiday, again I thought about transplant a lot but kept it to myself. It wasn't until the last night before the end of our holiday that I had an open conversation with my mum and Alex about it. I expressed my worries and concerns that had been building up inside me: mainly my fears of death. They must have been thinking about transplant themselves too as they were prepared for my fears and had comforting answers and advice to give. They reminded me of my good friend George who is a year post transplant (tx) and how well she is doing and how much it has changed her life. They talked positively about it and I needed to hear these things. I wasn't looking forward to going home, back to reality and having to face tx talks: the next chapter of my life.<br />
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The following week, I had a check up at the hospital. My results were good and I was a lot more relaxed. When I saw Dr Higton again, she mentioned starting the assessment process for tx: requesting the different tests that need to be done and starting the paperwork. I don't know why exactly, but in my own little world, I had thought that as no one in the team had really mentioned the "transplant" word since back in early August, that it was off the table for now and everyone (except for me) had forgotten about it. I was quite happy with that thought as I just wanted to brush it under the carpet and not have to deal with it for another few years at least. Again, my reaction was to cry; when I hear the word "transplant" in relation to my own life, it triggers tears. Before I left that appointment I spoke with Shelley, another of my favourite nurses (who I am kidding, they are ALL my faves!). She was brilliant in talking me through some of my initial worries and queries. It was the first time I was asking questions about it. It felt great after to have relieved myself of some of the burden. One of the last things she said was that if I didn't go for it I'd have her to deal with! Of course this was all in jest, but it made me rethink and almost instantly I changed my mind. She was right, of course I had to go for it!<br />
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That appointment and those conversations were the next step in my acceptance of my need for a tx. I now needed to be able to talk about it openly with my close friends and family and desensitise myself to it so that I could actually talk about it without crying. I began with Alex, mum and dad. Just bringing it up every now and then. The next step was to tell my closest friends. I wanted to do it in person with them where possible. I knew eventually I'd have to write this blog post, so I wanted to try and tell them before they read it on here. Firstly I told Emily; I cried and she was there for me. Then I told Daniel; I managed to keep composure. Next I told Ashley over the phone as we were too busy to meet up in person. I cried, but less this time. I was getting better at speaking about it. I haven't managed to tell all the people I have wanted to as I haven't had the energy to see everyone. If you are one of my close friends reading this wondering if I wanted to tell you in person, chances are I did and I'm sorry I haven't had a chance to speak to you <3<br />
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Last Friday, when some of my CF team came to do a home visit, we started the assessment process. I had most of my blood tests (except the ABG, which I will explain later or another time), lung function, weight and filled out a lot of paperwork. I cried (again!) but I am improving! I am crying less and less and am able to have conversations about it. I asked a load of questions to Judith and Emy, which really helped. As you know, I like to gather information as it helps me get my head around a situation.<br />
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So it's been about a month now since tx was first mentioned to me. I am in a much better place than I was mentally and can see more clearly. I am able to talk about tx without bursting into uncontrollable tears and have put my big girl pants on now and I'm just getting on with it. It's the next step in my life and there isn't much I can do about it. The deterioration of my CF is out of my control and I have accepted that. I will not give up the fight for life and I have so much to live for. On Friday I am seeing my psychologist and it will be the first time I will speak to her about my tx situation. This will be an important step for me.<br />
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I finally want to briefly write about why I am needing a tx, why now and my hopes and fears surrounding it. There are different factors that determine whether a patient qualifies for a double lung transplant: lung function below 30%, life expectancy of 2 years or less, quality of life lessened and there may be other things but I don't want to google it too much as it will probably scare me. Dr Higton said mine was mainly due to the quality of life part.<br />
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There is a small window in which a patient can have a transplant. They need to be ill enough to need one but not too ill to survive the operation. That is one reason we are starting the assessment now. It will still take around 6 months until I might be accepted onto the list. Who knows what my health will be like in 6 months time. I may be a lot more ill, I may be the same as now or I may have improved and be too well for transplant. Best to have everything in place just in case though.<br />
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The assessment process, and even the operation, doesn't scare me too much. It's just one darn thing that is freaking me out. The ABG I referenced earlier. It stands for Arterial Blood Gas. It is a special blood test in which a needle goes into the soft, delicate part of your wrist where you can feel your pulse. It goes deeper than a normal blood test and measures accurately the amount of oxygen and carbon dioxide in your blood. It is a well known and accepted fact that this blood test hurts a lot and I am not good with pain. I have managed to avoid it all my life, but unfortunately this test is essential and unavoidable if I want to get on the tx list. I haven't asked my CF friends too much about it or googled it as, again, I don't want to freak myself out even more. I have enlisted the help of a hypnotherapist and had my first session yesterday to try and overcome my needle phobia and be a peace with this test. I NEED to conquer this. I want to live.<br />
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So that's that for now. Thank you for reading and I hope you haven't felt you have wasted too much of your time on this lengthy post! My "secret" is out and now it's time to tackle it. This is the scariest time of my life and I apologise in advance to my friends and family for having to put you through any hardships in the days, weeks, months, years to come. I love you all and appreciate your love and support in my life. I am truly lucky to have such wonderful people in my life.<br />
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Until next time, Jo xoJohttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com2tag:blogger.com,1999:blog-1120330472624846427.post-7103917234971933762016-09-05T08:55:00.003-07:002016-09-05T08:55:43.579-07:00I'm back inJust a quick post about what happened over the weekend that has led me to be admitted to Frimley again. Mainly for my family and friends as I'm finding it hard to talk at the moment due to breathlessness, so by writing this I can just send you guys the link and you'll know what's going on :)<br />
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From Thursday I started to feel a little worse each morning. On Friday Judith, Emy and Charissa from my CF team came to do a home visit to see how I was getting on. My lung function was good at 39%, weight a little down but overall I was good and they were happy. I had my bloods done and they could see how I was coping at home. My parents and Al were around and all my animals were there to say "hi!" haha. Judith, Emy and Charissa were pleased with the amount of support I have from my family and the organisation, cleanliness and efficiency of the home, which was lovely to hear. It was so nice to have them over, like friends coming over for a cuppa! It really meant a lot and they are such wonderfully kind people who go above and beyond in their work for their patients. I am truly lucky to go to Frimley and receive such brilliant care!<br />
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Saturday was a bad day health wise and I needed a lot of support from my parents and my lovely aunty Zena came over with a big bowl of delicious soup for me and Al, who was also ill with sinus problems and a migraine. Regrettably, I had to miss one of my bestie's birthday :( I have a few extra special friends who are literally one in a million and Ash is one of them! So understanding of my circumstances and always there for me when I need her. This was no exception and I am so grateful that she has the patience of a saint and understood that I wasn't well enough to attend. I WILL make it up to you babe!! <3<br />
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In hindsight, it was a very wise decision not to drag myself up to London for Ash's birthday. That night I was very unwell with breathlessness, coughing, being sick, and just generally very uncomfortable and unable to sleep. By morning I was even more exhausted than I was before bed and called my parent's at 7.30 to ask them to come over. Al and I were meant to be visiting London Zoo with Al's family, but again, unfortunately we had to cancel. I wanted Al to go anyway but he is too loyal for his own good and wouldn't leave me. Once my mum arrived I ask her to call the CF Unit to see if there were any beds. You know I'm bad when I actually WANT to go to hospital! Sweetie, one of my favourite nurses, was on duty and said she could get a room for me on the unit. I just needed to go through Frimley A&E as it was a weekend and there are no doctors on the unit on the weekend.<br />
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By 8.45am we were in Frimley A&E majors. I can honestly say Frimley hospital has the best A&E department I have ever been in, whether as a patient or a visitor. Other than loosing Alex for an hour, everything was brilliant: the docs were great at getting my veins; the nurses were so attentive; I must have seen about 7 doctors, all of which were lovely and reassuring and when I was having an allergic reaction to one of the meds they wouldn't leave my side and kept me calm. I can't thank them all enough. By 1.45pm I was less breathless and on my way to the CF unit. Sweetie accessed my port and Al and my mum got me all settled in. Bless them, they were exhausted from the day! They went home to get some much needed rest at about 3.30 and my daddy was up with me from about 6.30. He was his usual self, creating lists of things we could do to pass the time in here (this is where I get my list making obsession from!) and helped me get ready for bed before leaving around 9pm.<br />
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I am a lot weaker than I have ever been and need support for almost everything from going to the toilet to setting up my nebs. During the night, after one of my many toilet trips and coughing fits, I felt a lot of pain in my right lung. I have been extremely lucky in my life not to have really ever felt much pain from my CF. Recently though I have been suffering from a lot of back pain and this added lung pain last night made getting comfortable very challenging.<br />
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This morning I was back to square one with breathlessness, coughing loads, in lots of pain, feeling sick etc etc. Just overall feeling rubbish. As ever, the team around me have been exceptional and my consultant prescribed me co-codamol for the pain. Ahhhhhh I feel sooooo much better now; I can relax! My heart rate has come down due to not having to be so tense from the pain all the time too, which is great. I've just had an x-ray done of my abdomen to see what's going on in there as I get very bloated and uncomfortable after eating, so once all that is sorted hopefully no more pain and discomfort for me. Then just need to tackle this bloody infection again. My CRP had shot up to 166, so it's no wonder I'm feeling the way I do. I'm in the right place though and just have to fight through it again.<br />
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My birthday is in 11 days, but to be honest it's the last thing on my mind; I just want to get better. The only thing I want to be out for is my birthday treat from my aunty, uncle and cousins on 24th Sept, which is a visit to Buckingham Palace and a trip to Phantom of the Opera, complete with a backstage tour as my aunty has contacts ;)<br />
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Oooh and tomorrow I start my hypnotherapy! The hypnotherapist has VERY kindly offered to come up to the hospital to start my sessions; I'm so grateful to her as I really need to get on top of this needle phobia once and for all.<br />
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In the next few days I am planning another post. It's something I need to write about. I'm only just feeling ready to write/talk about it properly, but I know it will do me good to be open about it.<br />
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So until then! xo<br />
<br />Johttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0tag:blogger.com,1999:blog-1120330472624846427.post-61532776819138625632016-09-01T03:03:00.001-07:002016-09-01T03:03:26.309-07:00September is here!September is here! My birthday month, although I'm not really that excited this year. I usually have a big house party with my friends to celebrate but this year I just don't have the energy, which saddens me. I'm going to be 24 not 94!<br />
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Almost 2 weeks since we came back from our lovely holiday and I am pleased with how we have managed back at home. I have had one hospital appointment, which went smoothly and have another one next week. I'm visiting a lot more regularly now, every 2 weeks. It's mainly to have blood tests to check my liver levels due to the anti-fungal medication I'm on; but it is also reassuring for me to know that if I start to decline, I won't have to wait long until an appointment with them.<br />
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Since being back at home we have managed to organise ourselves a lot better. We are still sleeping downstairs for now so it means we have less space in the living room, so we needed to make sure we had no extra clutter and everything had a place that was easily accessible to me. My daddy loves that sort of organising and he was a great help at getting the job done while I told him where to put things. That's another big step we have taken: my dad, now that he has retired, is going to become my carer as from Monday and Alex is going to put all his time into looking for work. He has been looking for a while but with my health getting worse, he has had less and less time to focus on it. It will be great for Al to have a career; he is young, enthusiastic and such a hard worker. He needs to be out there living his life to the full and not having to worry about me. It will do worlds of good for his mental health, routine, self confidence, socially and hopefully he will have more money than he does on Carers Allowance, which is only £60 a week- less than £10 a day! Shocking!!<br />
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Me and Al are so lucky to have such lovely friends and family who are so understanding and go out of their way to help us when we need it. One of my besties Emily came over to cook us a delicious spag bol- with left overs for another eve! And my neighbour Christine baked us some lovely Bake Off Style jaffa cakes. Due to being on O2 all the time, I'm not allowed near flames so Alex is having to do all the cooking, with his specialty (and only dish) being bacon sarnies haha so we welcomed the change! :D<br />
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We try to get out everyday (God, we sound like old fogies!), usually to the shops, seeing friends and family, running errands, hospital, chemist etc as it's easy for me to just sit in my pit (huge nest of pillows and duvet I have made on the sofa bed) all day and get lazy. That will do me no good! Need to keep exercising these lungs and keep the strength in my legs, arms etc.<br />
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My aunty and I are starting yoga as from next week too. On holiday we did it and I found it so helpful so we have found a local one. I am also starting hypnotherapy next week. I have had quite a lot of psychology help for my needle phobia in the past, but as much as I have improved, I'm still not 100% comfortable with the idea of needles jabbing me left right and centre. I've never had hypno done before but I am so willing to try anything to get over this fear as it's something I need to deal with for my whole life and the needles are only going to get more and more intrusive as I get older and more unwell. The ideal would be that I can be put in a trance and have absolutely no idea what's going on and feel NO pain! :D<br />
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Finally, another shout out to my uncle Mark who is running the Great North Run for Cystic Fibrosis Trust in just 11 days time! If you'd like to sponsor him, here is the link:<br />
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https://www.justgiving.com/fundraising/Mark-Hashim<br />
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And another wonderful friend of mine Katie is Skydiving for Cystic Fibrosis Trust in October! Her link is:<br />
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https://www.gofundme.com/26evczbk<br />
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Until next time! xoJohttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0tag:blogger.com,1999:blog-1120330472624846427.post-67007255376278214482016-08-21T13:25:00.001-07:002016-08-22T07:15:45.336-07:00Our Kendall holiday to Suffolk! I made it to the holiday! And it was just what the doctor ordered! It was with all the Kendall side of the family (my dad's side), so 14 of us and 2 dogs in a beautiful 3 storey country house with an outdoor heated pool, a tennis court and acres of garden for the dogs to run around in. We were extremely lucky with the weather too, which was beautiful all week- how very un-British of it.<br />
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The house</div>
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The pool</div>
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The gardens</div>
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The dining area</div>
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One of the living rooms</div>
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We did various activities such as visiting a model village, the sea side, the pier amusements; some of us visited a castle, and Alex and Tim went fishing for a day. We also enjoyed the amenities of the house and just being together as a family hanging out, doing jigsaws, eating meals, watching some olympics, playing tennis and going in the pool and having a photo competition at the end of each day. For me, it was perfect! There's nothing more I could have needed or wanted from my family holiday.<br />
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Al trying to win me a teddy at the pier amusements</div>
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Jigsaw</div>
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Mama having a float!</div>
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Me, Al and Barney at the model village</div>
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Barney at the model village</div>
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On the way down to the beach</div>
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Me and Abi in the pool</div>
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The castle</div>
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Me and my cousins splashing in the pool</div>
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Had my hair braided!</div>
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Eating yummy meals</div>
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It was lovely for Alex to have a bit of a break too from the constant caring role he has to play. With 12 other people around, he could have lay ins and some time to himself to chill and have fun and not have the burden of doing it all. Of course, my family help as much as they can when we are home too, but my parent's said it was a shock to them to see me on this holiday and the amount of help I am needing these days. It's only been the last 6 months where the caring role has really needed to be upped as much as it has, but a lot has changed.<br />
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As we were on the second floor of the house, I woke up each morning, did all my meds, nebs, physio, got dressed, ate breakfast etc upstairs before coming down as there was no way I was getting back up the stairs again until bedtime. I managed to get down each day before midday, which was good. Then I could enjoy the day with my family and forget all about CF :D<br />
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We had a yoga instructor come to the house on the Monday to teach us some yoga in the garden. It was great for my physio and felt brilliant opening up my body and stretching out my back and chest. I am definitely looking into continuing with it and the teacher gave me some advice on what sort of classes I could attend to help with my health.<br />
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Yoga class!</div>
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My aunty Lisa wanted to recreate some old photos of us cousins, they came out quite well! </div>
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We have had the order of this one mixed up over the years! Think we can finally remember it now :D</div>
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The week flew by and I was gutted when it came to an end! Back to reality now, hospital appointment on Tuesday, but I am feeling quietly confident that I won't need to stay in this time. In my head though, I can escape all of that and keep all the happy, happy memories of my wonderful family holiday at the surface <3 <3 <3 </div>
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Until next time! xo </div>
Johttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0tag:blogger.com,1999:blog-1120330472624846427.post-46351984568542275892016-08-09T13:13:00.001-07:002016-08-09T13:13:18.000-07:00EUREKA! Been in a week today. Feeling better than I did this time last week, which is good. But other than that it's hard to tell, it's been so long since I've felt absolutely wonderful I've forgotten what it feels like!<br />
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So after all this time, I THINK we have finally figured out what the problem has been: a fungal infection called Aspergillus. It's quite common in CF patients, I believe. I have been going downhill since Jan/Feb time and haven't been able to pick myself back up in terms of numbers in my lung function. So I re-read blogs, my diary, even went back through Facebook, just to see if I could pin point anything that could have caused my decline. Dr Orchard did the same with going through results of blood tests etc.<br />
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The next paragraph of this blog will be numbers and stuff and me trying to explain it, so if that sort of thing bores you, maybe skip this part haha. I know my family will probably appreciate the numbers and it will save me trying to remember it all and repeat it over and over to everyone :)<br />
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Sooo.... the blood results: There is one called an IGG, which is the measure for the aspergillus infection in the blood. In "normal" people anything over 40 is a concern; in CF patients, anything over 100 is a concern (although Chris said that he is unsure where the "100" came from and it could have been plucked from thin air!) In Feb, it was 195, then came down a bit in between then and May where it went up again to 192. My last blood results showed it is coming back down and is currently at 126. I am on anti fungal IV meds at the moment. My CRP, which is the infection levels in the blood were 42 when I came in last week, which isn't extortionately high considering back in May they were 121. However, they are now at 24, which is great as the aim is under 10 so I am getting there and Chris said it's the lowest they have been all year. This measurement is more for the pseudomonas and on/off serratia that is in my lungs, I believe. Finally, there is something called ESR, which I think is the inflammation levels in my blood. They are 16, which apparently is low. I don't know much info about this number and what is high/low.<br />
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The next steps are to carry on fighting the fungal infection. I am currently on Caspofungin IV and once that course has ended I will be on oral antifungals for a long time. Chris said he doesn't know how much improvement I will make, but we can only hope for the best.<br />
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I asked if there is anything I can do in my home to reduce the possibility of it happening again. So far my family have searched the house for any mould, thrown out all my towels, tea towels, bed linen, duvet, pillow, anything that could harbour fungus really. Chris reassured me that, as good as it is to keep those sort of things fresh and clean and to renew every so often, these things are unlikely to have caused the infection. Aspergillus is an airborne fungus that everyone breathes in almost daily. You are likely to find it in hay, compost and flowering trees. It was just unfortunate that I inhaled it one day and it decided to take root in my lungs!<br />
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The good news though, is that I should still be able to go on my holiday at the end of the week :D I won't have the definite "OK" until Thursday, but as long as I don't decline I should be alright. They have started a 3 day course of IV steroids, as opposed to the oral steroids I have been on for a few months. Hopefully this intense course will give me that extra boost to fight this infection once and for all. We will repeat bloods and lung function on Thursday too. After the holiday, the plan is for me to come to clinic as an outpatient to see how I'm getting on.<br />
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I would love to be able to say a long term plan, but at this stage it's sort of day to day, week to week time frames. I have had to put my lovely dog grooming business on hold, which has been a horrible step. Other than the helpfulness of a bit of an extra income, I miss my clients and their dogs, the independence, even the workout of bathing a dog haha. It's very frustrating and I hate letting people down. I just hope that in a few months time I will have built up the lung function, strength and stamina to reopen.<br />
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I have, as ever, been very lucky to have visitors, phone calls and well wishes from friends, family and neighbours. Without the kindness and thoughtfulness of you all I wouldn't be as happy and positive in my mood as I am. You pick me up when I'm down and these past few months have probably been the hardest of my life so far, emotionally and physically. It's easy to get caught up in all things health when you're in hospital for a long time and not seeing much improvement; so it's so, so helpful just to have a chat about something other than hospitals, lung functions, numbers etc and take your mind off it, and remember who you are as a person and what makes you you. Talking about dog grooming or having a girly gossip about something we saw on Facebook or watching old videos of belly dancing... anything that just reminds me that it's not all CF, CF, CF and I do have a life other than this hospital and it's something I want to get back to ASAP! So THANK YOU to you all, you may not even realise you have helped me, but you have <3<br />
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Until next time! xoJohttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com3tag:blogger.com,1999:blog-1120330472624846427.post-23697174438482388792016-08-03T13:23:00.000-07:002016-08-03T13:23:16.428-07:00The last few weeksI managed to escape the hospital after 5 days and return home on full time oxygen and home IVs. I LOVE being home! It's my favourite place in the world and I'm always happiest there with my family and animals around me <3 I won't lie, it was a struggle. Being on the O2 24/7 has it's challenges such as being almost like a dog on a lead lol; having to ask Alex to go and "turn me up" before I start walking, and getting out the house took forever with poor Al having to make about 4 trips to the car getting all my equipment, bags, dog, me etc in the car. But we managed it :) I didn't go upstairs once in the time I was home, which is something new and not welcome at all! We set up the sofa bed and made it into the biggest, most cotch nest with a million pillows and puffy duvet- it was so comfy.<br />
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Me and the most wonderful, most selfless man in the world <3</div>
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During my time at home I managed to get my charity hair cut done :D My mama treated me to the hairdressers appointment at Fresh Look in Stoneleigh, Epsom where Katie did an excellent job! I needed to have at least 17cm off and we managed to get 27cm off for The Little Princess Trust. Hopefully my hair will help make a little child happy <3<br />
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I was also out for my daddy's birthday, which was great.<br />
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I had my end of IV appointment yesterday and I asked if my parent's could come with me as I felt as though I needed them there this time. Al usually takes me and my parent's are usually at work, but my dad has finished work now and my mum was able to get a day off, thankfully. I wasn't having a good morning and by the time I got to hosp I was exhausted. I don't know what my lung function came out as but I know it wasn't good and to cut a long story short, I'm back in. Currently on MADU again as the CF unit is full, but hoping to move back there some point today. I'm on some different IVs including a new one I haven't had before. Let's hope a miracle happens and I bounce back to how I was 6 months ago and stay like that forever and ever!!!!!!<br />
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I have my family holiday to Suffolk in just over a week, so I'm hoping I will be well enough for that too :)<br />
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Until next time xo<br />
<br />Johttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0tag:blogger.com,1999:blog-1120330472624846427.post-61234739563539352452016-07-21T13:02:00.001-07:002016-07-21T13:07:45.651-07:00Ohhhhhh...Just a quick update for friends and family. As most will know from my Facebook status I was readmitted to Frimley yesterday. I woke up and came downstairs to start my morning routine of meds/nebs/brekkie/feed the animals etc etc and found myself extremely out of breath; more so than could be expected. I took my time with lots of rests in between each treatment/chore I needed to do, but I wasn't recovering. I fought my way through my treatments as I never not do them no matter how ill I feel; I would only feel worse if I were to skip them! Then I curled up on the sofa to rest.<br />
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Alex came down shortly after and could see I wasn't doing great. As ever, he selflessly put my needs first and did all he could to help me. After a while, he suggested we checked my O2 levels, which were very, very low. This explained why I was so breathless. So Al took me upstairs to the oxygen and we put it on 4L and I rested in bed. Around 11am we re-checked my O2 levels and they were still on the low side, so I asked Al to call Frimley, as I was too breathless to talk, to see what we should do. They asked us to come up to the unit.<br />
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Once there I had an x-ray to check my lung hadn't collapsed and bloods done to check my infection levels. Luckily, my lungs were OK but my infection levels were slightly up at 68. As I still was needing oxygen too, it was decided I should stay in. I didn't take this news well, I was so upset! I just couldn't believe it; less than a week ago I had been here and all was looking like it was going in the right direction, then boom just one random breathless morning and I was back in. I just kept thinking I can't do this again, not this soon, not another 6 and half weeks of being stuck and getting nowhere. I don't think the fact that I was exhausted from the heat and the breathlessness helped my emotions. After a while though and after speaking (well more like crying) to the nurses, my mum, Ali, the world haha, I woman'd up we just got on with what we needed to do. Unfortunately there were no beds on the CF Unit, so I am visiting another new part of the hospital for me: G1. It's an isolation unit and I have my own room still, which is good.<br />
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Today I have been much less breathless, thankfully and I am DETERMINED not to stay any later than Monday. I saw Dr Orchard and he doesn't want me in here any more than I do- in the nicest way possible! He reckons it could be due to the extreme heat we've had. Whilst I'm here though, I have started IVs to help get my CRP back down and fight off any starting infections and all being well, I will go home on IVs on Monday. Sadly I've had to miss my daddy's surprise leaving do/retirement party and it looks as though I'm going to miss my friend's baby shower and another friend's daughter's Christening, plus cancel my charity haircut and my dogs again! It's always the way isn't it :/<br />
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Fingers, toes, eyes -and anything else you can cross- crossed that this will be it for admissions this summer, or even year! Please please please!<br />
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Until next time xoJohttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0tag:blogger.com,1999:blog-1120330472624846427.post-62637704251287044982016-07-17T07:34:00.000-07:002016-07-17T07:34:02.252-07:00My holiday from the hosp, appointment and everything in between! Oh it seems so long since I last blogged; I've been meaning to blog for a few days but just needed to find some time to sit down and do it. The "holiday from the hospital" has been brilliant, I have mainly been getting back into my usual routines and building up strength and stamina. I have seen friends and family and have started dog grooming again a couple of days a week. I've had to limit myself to my small, easier dogs but it has been wonderful to get back into it. I've loved just doing the normal day to day things such as feeding the animals, tidying the house etc, it's funny how you miss these weird things. I have had to slow down and have a lot more rests than I'm used to, but I need to listen to my body otherwise I risk going backwards and I really, really don't want to do that!<br />
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My Alex's birthday</div>
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Al's birthday BBQ</div>
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Al's birthday BBQ</div>
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Al's birthday BBQ</div>
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Gorgeous flowers from one of my dog grooming clients</div>
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Pip and Poppy, 2 dogs I groom</div>
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Beautiful roses from my wonderful neighbour</div>
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Groomed my baby bear</div>
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In the 2 and a half weeks we only had one hiccup, which was last Tuesday evening. I had been to belly dancing and was eating my dinner when I could feel I was about to cough up blood. It sounds weird to know that it was about to happen, but what I have found is that when it does, it's like you feel like need to cough but instead of being able to control a cough or suppress it, you're out of control and the blood is just coming up on it's own without having to cough. Not sure if that makes sense? Anyway so I rushed to the bathroom and blood just kept coming up. I know that panicking only makes it worse as it increases your heart rate and blood flow, so I tried to stay as calm as I could and managed to shout for Alex in between coughs. He'd only thought I was coughing normally at this point, so was extremely shocked to come in and see all the blood everywhere. Al had never seen it that bad before and I think it definitely shocked him and he called for an ambulance and then my parents. Bless him, he was definitely in shock and I can imagine panicking a lot; I felt terrible putting him in that situation but he was an angel, as ever, and got me a chair and cleaned me up. The ambulance took about 20 mins to get to us and luckily by that time the bleed had clotted and I was coughing up a lot, lot less. I was so relieved. I had my parents and Al with me and the ambulance men were wonderful. As it had stopped and I had all the meds that I needed to take in these situations- transamic acid to make your blood more sticky and easier to clot to reduce the chances of it happening again- they were happy for me to stay at home once they had done all the obs and checks they needed to. If I had still been coughing up fresh blood when they had got to me, I would have gone in, but I felt safe enough to stay at home. Al and I slept downstairs on the sofa bed that night and I cancelled my dog for the next day and all my plans; I needed to take it easy.<br />
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As that was just 3 days before my hospital appointment to see how I was getting on at home, I was very nervous and on edge for the rest of the week. I so badly didn't want to have to go back in to stay and felt so disappointed that I had had that episode of bleeding. I just wanted to prove that I could manage at home but felt that I had ruined my chances of staying out.<br />
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The Friday came and my lovely aunty and cousin very kindly took me to my hospital appointment as Alex was still waiting for his driving licence back after being a year seizure free. I was super nervous the whole morning. We got there and my sats were 92%, which is what they were aiming for so that was a good start. Then my weight had gone up from 51kg to 53.1kg, even better. Then.... my lung function had gone UP!!!!! I couldn't believe it! Suddenly I felt like the happiest girl in the world :D My FEV1 had gone from 38% to 41%- yessss I'm in the 40's! My FVC was 88% too, which is pretty much my baseline so they were very happy with that. All that hard work is paying off.<br />
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They weren't even too worried about the bleeding. They said that it isn't surprising that it happened as my lungs are still very inflamed and will be sensitive at the moment and I should just do what I did before if it happens again. This was very reassuring to hear. I am to up my physio a bit more to try and increase my lung function even more. My sugars have been all over the place due to the steroids, so I might be starting a long acting insulin as well as a quick acting one to try and control them better. Everything else is staying the same to try and increase my lung function more, but it looks like it is finally heading in the right direction! So happy :D Then to top it all off, Alex called whilst I was at the hosp to say that he has his licence back; such a brilliant day haha. This is has taken so much pressure off us as I have been finding driving so tiring and now Al can do it all again.<br />
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Our first drive- to the chemist haha</div>
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I have another app in 2 and half weeks, so fingers crossed I can maintain or improve even more.<br />
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Celebratory meal with Alex, my brother, sister and Emma, Tim's girlfriend</div>
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Emma is well and truly part of the family now! :D</div>
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Our family and friends have been so supportive and kind to me and Al these past few months, we are eternally grateful <3 Thank you xxx<br />
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Enough about me! It seems to be the charity season at the moment and I want to use this blog to spread awareness and hopefully help raise some money for different charities. There is so much heartache in the world at the moment and it is awful to hear the things that are taking place. Let's show a little love and support and bring smiles to people's faces. We may not be able to solve all the problems of the world, but if we can help just one person, it will be worth it!<br />
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My uncle is running the Great North Run for the Cystic Fibrosis Trust and his link to his page is:<br />
https://www.justgiving.com/fundraising/Mark-Hashim<br />
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One of my bestest ever friends Ashley and her cousin are skydiving for Lupus UK and their link is:<br />
http://www.doitforcharity.com/AshleyChapman<br />
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And I have decided to donate my hair to the Little Princess Trust charity. I've been due a chop, so may as well get some use out of the old locks! Hopefully getting it done this week. Anyone know of a good hairdresser, hook me up! :D<br />
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Until next time xoJohttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0tag:blogger.com,1999:blog-1120330472624846427.post-36746772738376688022016-06-27T11:27:00.004-07:002016-06-27T11:33:27.761-07:00I'M COMING HOME!<div style="color: #323333; font-family: Helvetica; font-size: 18px; line-height: normal;">
<span style="font-kerning: none;"><u><i><b>I'M COMING HOME! </b></i></u></span></div>
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<span style="font-kerning: none;">Tomorrow, after 6 and a half weeks I will be HOME! I'm ecstatic :D </span></div>
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<span style="font-kerning: none;">Let me backtrack slightly though...</span></div>
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<span style="font-kerning: none;">I made it back down to the CF Unit last Tuesday; it was so nice to be back, in a different room this time, with my usual nurses, care assistants and cleaners. The windows here are a lot bigger so you get more natural light, which I find always improves your mood and the beds are much more comfy. I unpacked, had a much needed bath and felt settled. I made a conscious effort to unpack extra well- as it's usually sod's law that as soon you have fully unpacked and settled you have to pack again.... haha hoping to go home! </span></div>
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Me leaving MADU for the CF Unit </div>
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<span style="font-kerning: none;">I also had phone signal again back on the CF Unit. It was actually pretty nice to be phoneless for almost 2 weeks. When I got back to the unit I had so many messages and voicemails to catch up on; definitely kept me busy for the evening. </span></div>
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<span style="font-kerning: none;">The rest of the week went smoothly and routinely: nebs, physio, meds, eating, baths, sleep, chats with nurses, care assistants and cleaners, bloods, lung functions, catching up on TV etc etc. I saw Chris on the Friday and asked if I could escape for a few hours on the weekend, which he said I could. Then he also said that he was thinking of letting me come home for a "holiday from the hospital". He explained that seeing as things are still quite static, I am probably only going to start declining as I sit here in bed for longer and longer, my muscles getting weaker and weaker from lack of exercise and not to mention the boredom starting to set in after all this time. He said he would think about it over the weekend and see what my blood results and lung function were like when he returned on Monday to make a final decision; but possibly come home on the Tuesday for a week or 2 to give me and my body a break from the constant IVs and sitting around and get back to some sort of normality. Then, come to a clinic appointment and we can reassess the situation and see whether I need to come back in to stay or start home IVs or maybe, just maybe, I might improve at home. After all, medicine isn't the be all and end all for getting the body better. </span></div>
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<span style="font-kerning: none;">That, along with being able to come home for a few hours on the Saturday and Sunday set me up on such a high. I was so happy and excited and felt so alive! Alex's mama ever so kindly picked me up on the Saturday with Al and my baby bear who was super cute and cuddly, which was lovely. </span></div>
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<span style="font-kerning: none;">We went back to hers and I got to see my in-laws. Al's little brother was so sweet, as he always is! I asked him if I looked any different (fatter due to the steroids), and he was trying to say "yes" but in a nice way haha bless him, he knows women well already! :P Then Alex's grandad Reg came over. Al and I usually see Reggie at least once a week and it's been over 6 weeks since we last saw him, obviously with me being in hosp but Alex also hasn't seen him in ages as he is still waiting for his licence back from he DVLA now that he is a year seizure free, so it was just so lovely to see him. We had a long old hug and I couldn't believe the length of his newly grown beard- always the height of fashion is old Reg ;) I think it meant a lot for him to see us again, and me and Al felt exactly the same. Bless his little heart, since Al's nan died he must feel lonely at times, so I'm glad when we can put a smile on his face. </span></div>
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<span style="font-kerning: none;">After that, me and Al went home for a bit to see the cats and then headed to my parent's for a delicious roast with my family. As always, many laughs and funny convos were had and I felt so happy to be back in my little bubble of my idea of "perfection". Thank you to all my family, which always includes Alex's family, for such a wonderful Saturday, I'll never forget it! </span></div>
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<span style="font-kerning: none;">On Sunday I came out again, for a more relaxed day where me and Al just stayed in and I did a face pack, had a bath, watched Orange Is The New Black and Ali made me the best bacon sarnie ever. It's the simple things in life haha. </span></div>
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<span style="font-kerning: none;">Oh, but how could I forget... in the morning of the Sunday, I did my lung function and it had actually gone up! Corr, can't believe that nearly slipped my mind haha. So the FEV1 had gone from 36% to 39%- that's nearly 40! And the FVC (which is the less important number, but a number all the same) had gone from 60% to.... wait for it..... 82%!!! That's a 20% increase :D </span></div>
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<span style="font-kerning: none;">So Monday- today. I have been super excited to see Chris, waiting to hear his verdict, trying not to put all my hopes on coming home tomorrow but failing miserably and practically packed before he even came around haha. He came in and said I could go home! I did try and push for coming home this evening sneakily, but he said he'd rather finish the course of the anti-fungal IV, which ends tomorrow and then I can leave. Fair enough. One more sleep. One more sleep. One more sleep. I can manage that. "The Plan", as there always is one, is to go home on some oral anti-fungal meds, continue with the steroids- goodbye summer bod- and come back in 2 and a half weeks to see how I'm getting on. YAY! The best part will be that I will be out for my wonderful husband's birthday, I couldn't let him wake up alone on his birthday after everything that man does for me. I have also completed my walking test and don't need to take oxygen around when I am walking. I am doing a sleeping oxygen test tonight to check to see if I need any at home for sleeping and then I'm all tested out. Woooooooooop :D Andddd I managed to conquer my fear of finger pricking today; probably seems like nothing to some people, but for me it is the icing on the cake for great news and I'm so glad I managed it before I leave. Ahhhh smiles all round today :D </span></div>
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<span style="font-kerning: none;">Thank you to all my family and friends, no matter how close we are, for your continued love, prayers, support and encouragement through this difficult time for me. It really has meant the absolute world and I couldn't have stayed half as cheerful without you all. You guys are all wonderful and I am so lucky to have you in my life. Until next time xo</span></div>
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<br />Johttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0tag:blogger.com,1999:blog-1120330472624846427.post-17974120899041235732016-06-20T10:21:00.000-07:002016-06-20T10:32:31.895-07:00Small update<div style="color: #323333; line-height: normal;">
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I'm still up on MADU- but not for long yay :D Shall get to that... (keep up the suspense, ey).</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Not a huge amount to report as still not really any change, but I am feeling over my highs and lows moment :) </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Last Thursday was my lung function, which had re-dropped to 33%. These things happen though. The new physio I am doing (the cough assist) seems to be going well, we are using hypertonic saline with it too. The hypertonic saline is a salty liquid, which draws water into the sputum to help it be less sticky and I should be able to move it easier. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Friday was a good day for what I call "information gathering". For me, when things seem a bit out of my control, like they are now with not knowing what's going on with my body or why nothing seems to be working and not knowing when it will work, when I will be home etc etc; gathering as much information as possible from the docs, moreover Dr Orchard, helps me regain a feeling of control over the situation. Understanding the facts and figures, the plans in their heads, the results of all the tests, what I can be doing to hep myself and so on. Dr O came up to see me and was firstly apologetic that it had taken him this long to come up. I didn't feel he needed to apologise at all! He's an extremely busy man and seeing me twice a week up here is more than I expect of him; he is just such a kind person. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So he talked me through, in detail, the results of my CT scan. This was great for me to hear as I haven't seen the CT scan, and even if I did, I doubt I'd know what I'd be looking at haha. He explained that at the top of my lungs there is a huge amount of "plugging". Plugging, is the name they use when the airways are clogged with sputum. Like a plug, they stop things getting through; so air isn't getting to these parts of my lungs, or is very restricted. It is these plugs that we need to get rid of. Chris also said that these won't have just come overnight, they are very likely to have been building for months and months, and now it is just too much and that is why I've had the big drop in lung function. He also said that the bottom of my lungs remind him more of asthmatic patient's lungs. I don't know a huge amount about asthma, but I think these parts are more inflamed. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #323333; font-size: small;">So "The Plan" was: to carry on with the IVs I'm on, add in a new inhaler called Spirever, which is another anti-inflammatory and the best part...... come off the IV aminopholin, YAY! This meant I wouldn't be attached to machines 24/7 and I could come back down to the CF unit as soon as they have a bed, hopefully early next week :D As soon as the last bag of IV ami was off I felt brilliant, being able to walk around my room easily without trying to drag a machine around and I could go toilet whenever I wanted to and without unplugging all my cables. Weird things give you a buzz in here lol.</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #323333; font-size: small;">It also meant I could leave the room and ward and get some fresh air. Al took me down in the wheelchair with oxygen and we just sat outside, it was so nice. Chris also said I should try and get out for a bit at the weekend, it would do me the world of good. How could I refuse haha. Especially as it was father's day on the Sunday. Of course, not all plans come together and to cut a long story short, on the Sunday, despite all the planning and reminding to the nurses and on call docs, it didn't go to plan at all and I ended up not getting out :( I was really upset, as you'd imagine, but these things happen I guess. No point dwelling on the negatives. My wonderful parent's brought up the meal we were planning on having and it was beyond delicious! My mama is literally the best cook in the world and she never fails to disappoint :D Bless my angel of a daddy too; once he heard that I wouldn't be coming out for the day he drove all the way here to drop Alex up (Sunday trains </span></span><span style="color: #323333; font-family: "arial" , "helvetica" , sans-serif; font-size: small;">were messed up) so we could spend a day together just us two, then drove all the way home just to come up again in the eve. I'm so lucky to have such kind parents <3</span></div>
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<span style="color: #323333; font-family: "arial" , "helvetica" , sans-serif; font-size: small;">I have also been blessed with lovely visits from friends and family. A couple of photos from visits, except the visit from my aunty and cousin where I was asleep the whole visit, whoops! Sorry Linda and Nai xxx</span></div>
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Me, my uncle Phil and cousins Tamsin and Emily</div>
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Me and my friend's wonderful mama Paulina and her partner Clive</div>
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<span style="font-kerning: none;">Today I have slept of most of the day. I had a trial of another nebuliser Bronchitol, which I used to take a few years ago. The trial didn't go well so we aren't going to use it. The nurse has managed to fix my Power Glide, which was starting to be really painful and the drugs weren't getting through it. I also did my lung function, which has gone back up to 36%. It keeps fluctuating from 33-36, so until it goes up again, I'm, not going to celebrate too hard; but so glad it hasn't gone down. Speaking of going down, I'm going back down to CF unit TOMORROW! :D </span><br />
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We are still fundraising for my uncle's Great North Run in aid of The CF Trust, if anyone would like to support him and donate, just follow this link :)<br />
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https://www.justgiving.com/fundraising/Mark-Hashim<br />
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<span style="font-kerning: none;">Until next time xo</span></div>
Johttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0tag:blogger.com,1999:blog-1120330472624846427.post-57712742269122119682016-06-15T08:30:00.000-07:002016-06-15T08:30:21.060-07:00Highs and lowsWarning: long post alert!<br />
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The last few days have been a rollercoaster of emotions. It's not been fun; I prefer calmness, clarity and some control. Friday morning was when I last posted and was planning to have the new access put in- the Power Glide. The specialist, Andrew, couldn't make it so over the weekend the nurses just used my port and alternated my Aminopholin and other IVs.<br />
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Saturday evening I was asked to do a lung function. On this ward they have a different device to the one they have on the CF Unit. We couldn't input my height and weight but went ahead with the tests anyway. In litres it said I was blowing out 1.21, compared to my previous results of 1.07. I work better in percentages, so wasn't really sure what this meant but I went to bed happy, as it sounded as though things were improving; although I didn't want to get my hopes up too much until I'd seen the doctor the next morning.<br />
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Sunday came and I saw the doctor who confirmed my lung function had improved, she could only have a guess at a percentage, due to being unable to put in the height and weight, but she estimated 40%. I was ECSTATIC! I couldn't have been more thrilled. I told literally everyone and was on such a high. FINALLY, I was improving. Or so I thought...<br />
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That Sunday night I had a really bad sleep, and was very tired Monday. I saw the physio who explained we needed to do another lung function but on their machine this time. Long story short, there hadn't actually been any improvement :( I was beyond devastated. From such a high to be brought crashing back down to earth was tough and made even harder from the lack of sleep. I tried to remain positive though. As it was Monday, I was also due to have the Power Glide put in. This kept my mind occupied as I was nervous about that and could put the lung function result to one side.<br />
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I was proud of myself for how I was with the Power Glide. Andrew was amazing; calm, reassuring, patient and answered all my questions. I was lucky to have one of the nurses with me holding my hand and we managed to get it in. Here's hoping that this extra step is what it takes to get better, ey!<br />
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The Power Glide- covered as it cringes me out.</div>
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So I was back on a high from having that put in; proud of myself and had adrenaline pumping through me. I then saw Dr O. I love that he is honest and doesn't beat around the bush. I asked if he was worried that I wasn't improving and he said "yes". It's all I've been thinking about since then. As ever, he has another plan, but I just can't forget that he said "yes". Now that it's been a few days since that convo, I can see that I have been over thinking it, it's just a word! One simple word. But It really brought me down. He made the decision to change up meds again, to keep them fresh and added in an anti-fungal, just to cover all bases really. He's taken me off IV steroids and back on oral ones on a lower dose and lastly, booked a CT scan to have a better look at my lungs.</div>
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The, next thing was seeing the psychologist, who I see twice a week while I'm in: passes the time, it's good to offload and she's helping me with my needle phobia still. She's a lovely lady who I look forward to seeing. I asked if we could just chat as I was still feeling down from seeing Dr O and I just needed to talk things out. She listened, comforted and helped me put plans and techniques in place for if I'm feeling a bit overwhelmed with the emotions. She reassured me that, after 4 and half weeks in hospital, it's normal to have down days! I can't be positive all the time when nothing seems to be going the way I want it to. I'm only human after all.<br />
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Monday eve- yes we are still on Monday, corr it was a long day- I was mentally and physically exhausted and more than anything wanted to sleep. However, due to all the change up of meds, the docs wanted me to have them all before bed. It was 2am when they FINALLY finished. I had 4 hours of sleep as the next load were due at 6am. I can't tell you the exhaustion I felt on Tuesday morning. I don't envy mothers of newborns at the moment, let me tell you that! I woke up crying. Now that's not normal for me at all. It's crazy what lack of sleep can do to you. I was ratty with the poor boy who brings breakfast and all the nurses (I felt awful later). I was having my breakfast and the nurse mentioned that I didn't look too good. In my exhausted state I was just thinking, "yeah, thanks for that, you try feeling how I feel at the mo". I was in a foul mood haha. I looked in my little hand mirror and I was like "OMG". My face was unrecognisable.<br />
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I was feeling a bit puffy in myself, but just thought it was from crying and being tired, had no idea I looked this bad! There wasn't any time to sort it out right then though as I'd just been called for my CT scan. So they wheeled me round the hosp to the scanner. With a CT scan you need to have a dye called Iodine injected so that they can see a contrast of colours to make out the detailed X-Ray. Luckily, they could use my Power Glide, one less needle to worry about. All went smoothly and got back to the ward. A few minutes later, the docs came round and could obviously see my face- not exactly hard to miss. They instructed the nurses to give me an IV to reduce the water retention that had built up from the steroids and meds. Literally within minutes I was peeing out so much water. This continued every 10 mins or so and even by lunch time my face had gone down so much and I could open my eyes a lot more. I'm on a tablet form of this anti-water-retention drug now for a couple of days just to get me back to a more normal state; keeping an eye on my water intake and outgoings to make sure I don't go too far the other way and end up dehydrated, which could dry up my lungs making it harder for me to shift everything. Ahh never just straight forward at the moment.<br />
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Anywho, the CT scan came back just showing typical CF lungs: a lot of stuff that needs to come up but not blood clots, which is good. I kind of wanted them to find something though- anything. An explanation or hint as to why I'm not getting any better.<br />
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I had a shower and hair wash, thanks to the wonderful nurses, which helped me feel more human but I was still so, so tired and emotional. Sometimes in hospital you can just rest and rest and rest, but other times it's all go, go, go and you never get a minutes peace. Yesterday was like that. I was so fed up and in a really negative mood; wanting to go home, or even just back downstairs to the CF Unit. Wanting my family; to be able to plan things and look forward to things; to be in my own bed, eat my own food, sit in my own bath, groom dogs, not be connected to a million monitors.... you just take it for granted until you're put in a position of having it all taken away from you. At the same time though, I feel guilty when I have these thoughts. Who am I to complain, when there are people in the world who would give their right arm to be in a hospital like Frimley. Children in war zones, sleeping on the streets, orphans alone and scared. You have to look at things in perspective and be thankful. It could be a million times worse.<br />
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It's hard to know how to feel in here at the moment. You can let your thoughts run away with you or you can try to keep them in perspective and in the present. I guess it's good to do a bit of both. Be mindful.<br />
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Back to the present, well the past- Tuesday still- I had a good chat with my dad over FaceTime and my lovely friends have been up to visit; although I doubt I have been much fun to be around this week so far haha- totally sorry guys!! I managed to get a GOOD SLEEP last night though- YAAAAAY!!!! And a nap in the morning, so I feel like I have more clarity.<br />
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Today (yes I have finally got to today, sorry about the long post) the physios decided I needed a change of treatment, so out has gone The Bird and in has come a machine called the Cough Assist. I guess it does what it says on the tin. Fingers crossed it is super beneficial.<br />
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Presently, they are having trouble getting bloods from my Power Glide, but I am consciously not over thinking it. I don't want to get all anxious and down again. What will be will be. Worrying now is not going to solve it. I'm looking forward to seeing Alex and my family this eve and hoping for another good night's sleep before redoing my lung function tomorrow. I'm trying not to get my hopes up too much, trying to remember a hilarious scene from one of my favourite TV shows, "My Family", where Ben is saying not to have any expectations in life so that you don't get let down. I know it's over dramatic, but it makes me laugh and I'd rather be laughing than crying!<br />
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Until next time xoJohttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com1tag:blogger.com,1999:blog-1120330472624846427.post-12053917478010110452016-06-10T03:02:00.002-07:002016-06-10T03:02:25.060-07:00What a dayCorr, reading over last week's blog, that weekend out seems so long ago now. So where were we... the docs had changed my meds up again and reduced steroids and halved my nebs. There were no improvements from this, in fact my lung function and infection levels were getting worse, so on Tuesday Dr Orchard came up with another plan (love a man with a plan!), which was to up the steroids again but do them through IVs instead so they are going directly into my bloodstream as opposed to through my stomach. This way would be faster acting and more effective. He wanted to trial this for just 48 hours and if there wasn't any improvement on Thursday, the next step was Aminopholin through IV. Again, I was on this orally at the time. If it came to this though, I'd need to move wards.<br />
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Thursday came around, which is probably the day that is least fun on the ward. They do the fire alarm testing at 8am for an hour, which is fine as I'm usually up around 8/8.30 but the noise is so piercing and just goes straight through you lol. For an hour. Then bloods, eww. After that though it picks up as the lovely aromatherapy lady comes round and gives a massage- highlight of the week woo :D I was super confident that my lung function had come up; I felt good, I could breathe, I was in a positive mindset.... So I asked to do it and couldn't believe it had gone down! 33%, lower than when I came in :( I was obviously disappointed, but I was OK and knew a plan was already in place for this circumstance. So I went back to my room and saw the doc who confirmed I was moving wards to start Ami IV. Packed and waiting to go, my daddy turned up just in time to come with me :) I must say, for me at least, I was very relaxed about the whole thing haha.<br />
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The ward is a high dependancy unit, which sounds scarier than it is. It's just that on the Ami IV I need to have my heart rate monitored continuously as the drug can make it go really high. Hopefully though, this will open up all the little airways in my lungs so that the other medicines I am doing can reach those areas to clear the infection.<br />
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It was all going so well until they told me I needed another access done. I have my port in my chest, which is where my IVs go through, but as the Ami is supposed to be going 24/7, I needed another tube in somewhere. Over the years I've had psychological help getting over my needle phobia and have coping strategies to help me get through blood tests, port access', blood sugars, insulin pens etc. But for some reason this really freaked me out. Reflecting on it this morning, I think all the day's events had caught up with me: the disappointment of the last 6 weeks of meds having no effect on my health; my lung function dropping still; moving from a ward where I felt comfortable and knew everyone to a ward I'd never been to and didn't know anyone or what to expect; then being told I needed another access done- a cannula at that, which are notoriously unreliable lol. So I'd say out of 10, my anxiety was like about a 5. The nurse asked if I'd like to try something for the anxiety; I said yes and she gave me a diazepam. I've had it once before when I was much younger. It's a pretty regular anti-anxiety to give someone.<br />
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Then she came back to do the cannula and I just lost it: crying, panicking, refused the cannula. The lovely nurse said that was fine and we managed to just alternate my meds through the port. It would have been fine if it had all stopped there but it was like I had opened a floodgate! I couldn't stop crying, literally for about 3 hours. Alex and mum were up at 7.30ish and I was just beside myself, I still don't really know why. If you'd seen me, you wouldn't have recognised me. It's embarrassing looking back on it now lol. I was angry, scared, shaking, bawling, couldn't catch my breath, hot and cold, confused, irritable... just a mess! Poor mum and Al for having to be with me during it, it can't have been nice for them but they were so, so, so helpful and didn't give up trying to calm me down. They were absolute angels, as ever <3 By 9.30pm I was exhausted and was regaining control of my breathing and the panic/anxiety/not sure what to call it! They left me with the wonderful nurses up here who checked on me at least every half hour at first and then every 2 hours during the night for obs and ECGs.<br />
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I can't, of course, be sure but I do think the "attack" was due to the diazepam. It's supposed to be anti-anxiety but I feel it did the opposite for me. I read the side effects and it is possible. Plus the last time I had it when I was younger, I remember having a similar experience. So I don't ever want to take it again, it's just not for me.<br />
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This morning the nurse said that during the night all of a sudden my obs improved loads- eeeekkkkk :D my heart rate went down, my O2 was 97%. Not sure if it's still like this now but it's a bit of hope that this med might actually make a difference.<br />
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I still have to have another access done, but I'm having some tube that I can't remember the name of, put in by a specialist. The plan was to have that done yesterday, but he was away so that's why the cannula was going to be done. Fingers crossed for a smooth and pain free day.<br />
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Until next time xo<br />
<br />Johttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com1tag:blogger.com,1999:blog-1120330472624846427.post-91924946421225838712016-06-02T03:12:00.002-07:002016-06-02T03:25:32.142-07:00UpdateComing up to 3 weeks in, so thought I'd better do an update for my family. As well as my bad chest I've lost my voice for about a month now so it's had to call up all my aunties and uncles and cousins to tell them how I am, so writing this blog and sending it to them is easier for me at the mo.<br />
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Sooooo, last blog I was looking forward to coming out for the weekend to spend time with my family. It was such a lovely weekend! I used a wheelchair and oxygen for the Saturday, but the Sunday was more chilled and I didn't need to use them. I think I overdid it on the Saturday lol, I got too excited and carried away and by the end of the day I was absolutely shattered! All my cousins from my dad's side and their other halves and my cousin Jess from my mum's side were over and we went to the park to watch my brother play cricket then played some games at home and got a takeaway. The Sunday I slept for most the day in the hosp and then in the eve we all went to my cousin's house for a BBQ. Was such a perfect weekend being with my family and my Alex and saw my pets too <3<br />
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Me, Jess and Al</div>
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Jess doing my hair</div>
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The most beautiful garden ever!</div>
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Me, Emily and Abi splitting lol</div>
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Timmy and his girlfriend Emma</div>
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Me and Emmie</div>
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My Barney bear</div>
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It was bank holiday last weekend so didn't see a doc until Tues where it was decided that as there still wasn't any change in lung function or CRP or anything, I needed another change up of meds. I'm now back on Tobramycin, Aztreonam, a new one that I haven't had before bringing with "T", a nasal spray to see if that helps with anything, salbutamol nebs 4 times a day, half the DNAse to 2.5mg 2 times a day and they have reduced my steroids. Quite a lot of changes so fingers crossed this does the trick now! :D<br />
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As I am still not at all anywhere near my best, I have decided not to risk going to Ladies Day. The weekend, as great as it was, was such a struggle at times it would only be harder at Ladies Day. I was obviously disappointed seeing as I'd started meds about 5 weeks ago now in order to be in tip top condition for the event, but c'est la vie! There's always next year.<br />
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The hardest part of being in hosp for me is being away from my family and husband. Alex is the most amazing, supportive, most caring person and without him I would be so down in the dumps. We do everything together and while I'm not around he is having to do all the housework, look after the animals, all my washing and bringing me bits up, visiting me every day.... It's even harder at the moment as he had to give up his license for a year due to his epilepsy, so he can't just pop to the shops for food shopping or go meet his friends or drive up to see me; everything is such a palaver and I don't know how he's stayed so patient lol! Hopefully he will be getting his licence back in July, so that will make our lives SOOOO much easier! He's my absolute angel, my rock, my world, my everything... all those words used to describe the one you love! I couldn't be without him <3<br />
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Poor Al got soaked coming up to see me! </div>
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Hopefully next post will be about me going home!! Until next time xoJohttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0tag:blogger.com,1999:blog-1120330472624846427.post-72521235392121911942016-05-27T10:24:00.000-07:002016-05-27T10:24:42.478-07:002 weeks in..!Two weeks today since I came into hosp. Starting to get bored now, which is a good sign I guess! I thought I would have been out by now but the progress is painfully slow this time. I was fine with cancelling the first 2 weeks of plans, but I don't want to cancel any more. I want to get back to my dog grooming and I have a lot of plans with all my family this weekend that I don't want to miss and my first ladies day at Epsom next Friday, which me and my friends have been waiting all year for, which I don't want to have to miss out on.<br />
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I saw Dr Orchard this morning to discuss the plan of attack and my results and all that. My lung function is creeping up slowly but surely; I'm up to 39% now and my CRP hasn't moved much at 41, but at least it hasn't gone back up. I changed meds about 4 or 5 days ago as the previous ones weren't having much of an effect. Chris is now happy with the combo and thinks that we just need to stick it out a bit longer but it should have a good impact. He also thinks a lot of the issue is inflammation, which takes a little while to settle.<br />
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Good news though is that they stopped my oxygen today woo! It's nice to be able to go to the toilet without feeling like a dog on a lead haha. I still need it at the moment for exercise but it's a great step in the right direction :D <br />
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I'm allowed out at the weekend in between my IVs to see my family, which is exciting. It's my parent's 25th wedding anniversary and while the adults are away being all adulty having posh meals in hotels and all that, me and my cousins get to hang out. Hopefully the weather will stay like today and we can go to the park with my Barney bear. Haven't seen him in 2 weeks, miss him so much. My cats too, and I'll be home in time to give them their flea treatment tehe they're going to be so glad I'm back for that- not! ;)<br />
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I have also been given the OK from Chris to attend ladies day as long as I feel up for it. I won't make a final decision until a day or two before the event, as I just don't know how I will be this time next week. The arrangement for the day was for all my friends to come to mine and Al's for a champagne breakfast and we've booked cabs to get up to the downs, so we may need to tweak the plans, but we will see. I called up the racecourse for advice as to whether it was suitable to bring my wheelchair if I'm needing it. The woman was very helpful and the event is accessible for chairs, which is a relief and puts less pressure on me to be 100% and able to stand for the whole day. At least, even if Im only feeling 50% I should still be able to go and can take my chair to be in when needed. Looks like I won't have time to go dress shopping though, so will need to route through the wardrobe for something to wear.<br />
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For physio, as well as the Bird and percussion, I am exercising more now that I've got more stable sats and it's not too much for my body anymore. I've been using the exercise bike and managed to convince the physios to take me for walks outside; I don't want to miss out on this sun! Trying to top up my tan as we walk round the car park haha.<br />
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The steroids are making me super hungry still, which is great but my god is my face getting chubs! I've got the usual moonface that comes with taking prednisolone. The food here is so good. I never thought I'd say that about hosp food. I prefer it to my own cooking haha. There is such a variety and it always tastes so nice. I'm very lucky to be here where they clearly have really good chefs. </div>
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Until next time xo<br />
<br />Johttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0tag:blogger.com,1999:blog-1120330472624846427.post-60484737495751302242016-05-22T11:39:00.000-07:002016-05-22T13:19:09.853-07:001 week, 2 days inIt's been 1 week, 2 days since I was admitted and things have been going steadily. The first few days I slept a lot and it was a relief to be able to rest. I didn't realise how much I needed it. I lost my voice during the week, which made it hard to communicate with the team and friends and family, but it's nearly back now. I've been so lucky to have visitors everyday; my aunties and uncles, cousins, god mother, friends, mum, dad, Tim, Abi, Tim's new girlfriend Emma and my nana and papa are on their way up now :) The generosity of people always overwhelms me, taking time out of their busy lives to travel all this way and sit chatting to me and keeping me company. I appreciate it so so much xxx<br />
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I've been having regular blood tests, lung function tests, weight done etc. Weight has been going up, lung function hasn't really moved much sadly and I'm just waiting to hear back on my bloods to see if the CRP- which measures the infection levels in your blood- is coming down. It was 121 when I first came in, which explains why I was feeling so rotten; then went down to 48, back up to 56 and hopefully is going to come down again.<br />
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One of the docs made me laugh on Friday- well actually it makes me laugh now but at the time I was a bit worried about him. He's slightly on the odd side, but very very nice. He came in to see how I was, the usual questions and all that, and I asked if he knew about my blood results. He said he hadn't checked them but will do so right now and be back in a minute. He wondered out of there room and I just sat and waited. 4 hours had passed before I asked a nurse if he's ok as he still hadn't returned! Even up until today I haven't heard back from him haha. Hopefully he will be back tomorrow so I can see where he went to lol!<br />
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I have physio twice a day and I'm doing the Bird with a flutter attachment and percussion. The Bird is a device that forces O2 into your lungs to open them up and then you blow against it to stop the flow and breathe out. With the flutter attachment it sort of vibrates your lungs as your blow out. The percussion is someone sort of hitting your lungs. This is all to try and get everything off my chest. The thing is, it doesn't seem to be doing much. I'm also doing my usual neb called DNase twice a day to help loosen things, but again it's not having a huge impact. So tomorrow I'm planning to speak with my physio to see if we can do something more effective. I personally find that exercise is most effective for me to clear my chest, so maybe I could start doing some. I did ask last week but they said they need to check my O2 levels to make sure I will be ok for it. I don't really know what it all means but I just want to get going on it, I want to get better and get home! I'm still on 2L oxygen all the time, so I need to be well enough to be weaned off that too.<br />
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Radha, one of the care assistants kindly french plaited my hair yesterday eve, so now it's all nice and out of the way.<br />
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My aunty Linda made this gorgeous flower arrangement for me</div>
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Snapchat has been like my best friend haha, putting the filters on my parents is so funny!! I don't know if you can upload vids to this...?<br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzdsEj4TcdzB1Yn7rasfKeXJekW7D_W2t1B7c_1zsxEaarh4tcOlNd0ACC8f7ozFbBQZyYPyrtlVC-9caV-vg' class='b-hbp-video b-uploaded' frameborder='0'></iframe><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dx95YQIvTCjA2tiXhPiP7OujMAsMkbYmhjvRtg1E1HFMnY5F_ljXCN8mVvjeMuKe3FF4G1XRhZlxKgvXSJ-rQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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Ok, let's see if they work.... haha. </div>
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I'm missing my home, Alex, family, Barney, my cats and my dog grooming so much! Can't wait to get home again <3 Until next time <span style="text-align: center;">xo</span></div>
<br />Johttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0tag:blogger.com,1999:blog-1120330472624846427.post-76493585411616633182016-05-14T03:02:00.000-07:002016-05-14T03:02:47.320-07:00It was all going so well!It was all going so well! I was on the IVs, getting chubs from the steroids, getting my energy back, my life back then boooooom I get a "cold". Last Sunday I just came down with it and felt so rough. Colds are never fun, but you just have to get through them. So I rested as much as I could.. in between dogs and food shopping, running errands etc but just kept getting worse. I knew I had my end of IVs appointment on the Friday so I didn't need to wait long until I could see a doc and check I was OK. By Wednesday I was cancelling dogs and trying to find someone to drive me to the hospital as I just didn't have the energy. Thursday was just as much of a struggle and Alex and I ended up sleeping downstairs so I didn't have to tackle the stairs whenever I needed the loo in the night.<br />
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Friday came and I was sooo ready to see Dr Orchard! I couldn't walk more than a few metres without stopping, couldn't get my breath at all, constantly hunched over and just not at all anywhere near myself. I can honestly say this is the worst I have ever felt in my life. All over a bloody cold!<br />
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I was so so soooooo lucky to have quite a few offers from such kind people to take me to the hospital. I am eternally grateful for them <3 My aunty Linda, who lives quite close to Frimley Park Hospital, collected me at about 7.30am and drove me there. We slowly slowly....slooooowly (haha) made our way into the hospital and they pretty much instantly offered me oxygen, which has never happened before so I must have looked a bit peaky to say the least lol. I said that I was ok and we checked my sats and everything and I wasn't doing too bad. I did my weight, which had gone up, and my lung function, which had obviously gone down. Right down to 35%, my lowest I've been. Emy came in to pre-warn me that it was likely I was staying in. Of course I was upset and she asked "what did you think we would say"? And I said that I thought they'd say that as it's a cold they can't do much for it and I'd just have to ride it out. Haha looking back that was quite naive of me!<br />
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Dr Orchard came in to see me and agreed I needed to stay in 100%. He thinks I have the flu not just a cold so we did some swabs to send off and he started me on flu meds. I had my bloods and port re-accessed and then as they needed to move a non-CF patient to another ward and prepare a room for me, Linda and I went back to hers for lunch and chill before they called me back.<br />
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It's always lovely to go to aunty Linda's, she has the most beautiful garden you will ever see and her house is so homely. I took up my favourite place on their marshmallow sofa and didn't move until the hosp called me a few hours later.<br />
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I went back and we settled into my room. Sweetie, one of the nurses decided to start me on some oxygen and omg did it make a difference! Within half an hour I could sit up more straightly, I could talk a few sentences without getting out of breath, I was more awake.... it was such a relief. It's the first time I've needed it other than being on an airplane and it's so helpful just to get a bit of rest from gasping for air the whole time.<br />
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Linda was an absolute angel yesterday, she was with me for a full 12 hours. Supporting me, driving me, feeding me, holding my hand, comforting me, laughing with me, entertaining me, educating me haha! She's a wonderful aunty and I'm so lucky to have such a loving, caring family <3<br />
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My mum, dad, brother and sister came up in the evening and we laughed all eve. I think my dad is the funniest person in the world and he always cracks me up! I have to tell him to stop otherwise I have such a coughing fit from laughing lol- the best physio there is though!<br />
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I have had to cancel all my plans obvs, which means I'm going to miss my cousin and another of my aunties in their theatre production today :( Absolutely gutted! Break a leg girls, you'll have to give me a rendition when I next see you. My brother's new girlfriend is taking my place though, and to be honest, I think they're more excited to meet her than if I were going up hahahaa ;)<br />
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My Alex is coming up in the next couple of hours to be with me today <3 <3 <3<br />
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And finally, but absolutely by no means least (sorry this is a lengthy post), ANOTHER of my amazing family members needs a mention! My uncle Mark has just signed up for the Great North Run (13 miles) and is so kindly raising money for the Cystic Fibrosis Trust. He got the confirmation through last night and has set up his JustGiving page :) If anyone would like to donate, Mark, myself, my family and everyone else with CF would be ever so grateful. Mark has put a target of £200, but I want to smash through that target and help raise as much as possible. The link is below if you'd like to donate. He runs it in September, so expect a few months of annoying posts about it haha:<br />
https://www.justgiving.com/Mark-Hashim<br />
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Until next time, xoJohttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0tag:blogger.com,1999:blog-1120330472624846427.post-78901024924605114182016-05-05T14:45:00.001-07:002016-05-05T14:45:58.570-07:00CF Awareness Month- it's not all doom and gloom!May is Cystic Fibrosis Awareness month. So, I feel I simply must do an obligatory blog post! The usual awareness posts I see on social media are, more often than not, slightly negative ones. It's not all doom and gloom guys. Having CF- or any other illness, disease, life challenge, has it's perks; you just have to find them! Let's see if I can think of 10...<br />
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Number 1.<br />
We get to eat as much chocolate, crisps, ice cream, milk, angel delight, chips, pizza, take aways.... as we want. The more the better.<br />
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Number 2.<br />
We get to skip the airport queues and get one of those buggies all the way to the plane whilst everyone else walks for miles and miles.<br />
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Number 3.<br />
Eventually, we will be entitled to a blue badge meaning wider parking spots (great for rubbish parkers like me) and sometimes free parking.<br />
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Number 4.<br />
We could probably sit a medical exam and do pretty well, with the knowledge we pick up over our lives. We understand medical notes and terminology.<br />
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Number 5.<br />
We make life long friends with other CF'ers. We understand each other like no one else can and can offer advice and reassurance.<br />
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Number 6.<br />
We have a great excuse to sleep; anytime, anywhere, for however long!<br />
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Number 7.<br />
We have a great party trick- taking 15+ tablets in one go.<br />
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Number 8.<br />
A nurse from Brompton once said to me that CF'ers have the strongest relationships with their partners <3 (of course this is only her opinion, but I like it all the same!)<br />
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Number 9.<br />
I can't speak for everyone, but I feel I have a great appreciation for life because of my CF. I feel I look at things slightly differently to other people my age.<br />
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Number 10.<br />
We're just great! OK, I couldn't think of another one haha, but 9 is pretty good :D<br />
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So yes, CF may be a pain in the arse and we'd all LOVE a cure for this disease, but let's not dwell too much on that and take any positives we can. There's always someone much worse off than yourself. May is CF awareness month, so lets make people THINK about it, TALK about it, LEARN about it <3<br />
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<br />Johttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0tag:blogger.com,1999:blog-1120330472624846427.post-89869399374647922242016-04-28T08:01:00.000-07:002016-04-28T08:01:14.262-07:00I feel like I'm on drugsI feel like I'm on drugs. Well I am.<br />
I had my appointment on Tuesday. Alex was with me and we saw all the usual people. My weight was 50.6KG, quite similar to the last time I was there. My lung function was FEV1 41%, FVC 79%, down from last time. I was expecting to go onto oral antibiotics and maybe have a little boost from that, then in another month or so's time go onto IVs. However, when I saw Dr Orchard he was determined to get me better asap. Back in Jan '16, my lung function was great and increasing well. Then I had a dip and the IVs I was on back then didn't really seem to do anything. It showed in my end of IVs lung function as it hadn't gone up at all. Dr Orchard wasn't in on that day though, so I couldn't carry on with IVs and just came off them to see how I'd do.<br />
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This time though, he suggested I take 2 new IVs, oral antibiotics and steroids. I agreed that I felt like I needed the steroids, I'd felt so inflamed the last few days. I've never been on this much strong meds. It's probably not even that much compared to what people who are really ill are on, but for me it's a lot lol!<br />
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Today is my second full day of taking all these meds. I am very much feeling like I am on drugs! My tongue and lips are tingly and a bit numb and I just feel very spaced out and as if I'm not really here haha. It's strange and hard to describe. I called the hosp this morning as I just wanted to check that I'm not having a bad reaction to the drugs. They reassured me that this was quite normal for the drugs that I'm on. They did say that if the feelings are too much for me that they can always lower my dose, but I want to try and stick it out as I really want to get the most out of this course of IVs, orals and steroids and give myself a huge boost that hopefully will last all summer long! :D<br />
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Perhaps in a couple of days my body will start to get used to it and I won't notice these side effects so much. I've cut down my dogs to one a day, trying not to do more than 4 days, but it's so hard to say no lol. Also, for the moment I don't want to do too much driving, at least until I'm feeling more myself again.<br />
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Until next time! xoJohttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0tag:blogger.com,1999:blog-1120330472624846427.post-42865715296414002862016-04-23T15:06:00.003-07:002016-04-23T15:06:45.601-07:00Late night postI've been meaning to blog for a while, but life's been so busy- a good thing! Usually means I'm doing well. When I get...MAKE time to sit in bed with my laptop for a good few hours it's usually a bad sign health wise. So yeah, I'm needing time to rest at the moment; chest is bad, appetite and energy have gone, sleeping loads, arthritis is flaring up and getting a lot of pressure headaches from the coughing. Not too bad though as I've only been like this for 3 days and I have a hosp appointment on Tuesday so I should be able to nip it in the bud with some meds.<br />
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So I wanted to update on the trial. I've been doing it for about 6 or 7 weeks now. There's a lot of positives and a couple of negatives, I have found. A positive is that it only takes about 5 minutes a day to complete the app requirements- weight, sats, lung function, how well you feel, how your cough is, sputum sample and register your activity. So even with a hectic schedule, patients should be able to fit it into their days. Another positive is that with the activity monitor- the FitBit/pedometer type thing, I have found myself a lot more aware of exercising and pushing myself more. On the face of the "watch" is a series of dots. As you do more exercise throughout the day the dots increase round the clock face. If you manage to get all 12 dots completed it does a little celebration pattern haha. I think each dot represents 1000 steps. I'm not entirely sure how accurate it is though. I wear mine on my wrist and if I'm grooming that day (imagine brushing a dog with the arm it's on), it says I've done loads of exercise. I can't complain, it makes me feel good haha. I'm sure if I wore it on my ankle though, on those grooming days it may say I've done very little exercise.<br />
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The "watch" face- ignore my face it was bedtime!</div>
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One of the biggest negatives I have found is that if all my readings that the app requires are low, it makes me feel crap and down in my mood the whole day. I originally did everything in the morning; my weight, O2 levels, lung function were all very low for me and I was worrying that I was ill and I kept worrying all day about it. It doesn't put you in the best of moods when your lung function is in the 30's % when you'd expect it to be in the high 50's straight after IVs! So I decided to try doing everything in the evenings just before bed. Again, sometimes readings are low but I put it down to tiredness at the end of the day. However, mainly they aren't too bad and I don't feel quite so worried. Also, I must remember that the equipment I've been given is unlikely to be as accurate as what the hospital has. I will be mentioning this with the research team though, as if a patient has anxiety or possibly a mental health illness, this could bring them down a lot if every day they are seeing their readings a lot lower than they had hoped or anticipated. This type of testing daily may not work for them.<br />
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One last thing that I will mention to the research team will be the weighing. Daily weighing, I have found, seems to fluctuate so much. I know at different times of the day we weigh different amounts and things, so possibly weighing once a week at the same time on the same day would be more beneficial. Then you could get a clearer idea of what your weight is doing.<br />
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So about 4 and a half months to go :)<br />
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I've made the most of this last well patch: seeing loads of friends, having family sleepovers, celebrating my brothers birthday, had my annual night out haha (only have the energy for 1 a year these days lol!), grooming doggies... Now just a little recovery sesh before summer begins! Lots to look forward to :D My first ladies day, my 3rd wedding anniversary, my parent's 25th wedding anniversary, a family holiday and lots of birthdays!<br />
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Until next time<br />
xoxoJohttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com1tag:blogger.com,1999:blog-1120330472624846427.post-55236215929609048582016-03-09T09:52:00.002-08:002016-03-09T09:52:29.315-08:00The trial beginsYesterday was the end of my 2 week course of IVs. I feel a lot better in myself- more energy, sleeping better, coughing less, more of an appetite etc etc. My lovely friend Donna from belly dancing took me to my hosp appointment to check lung function, weight, have a blood test, take out port needle, get nebuliser meds and start the trial.<br />
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Disappointingly, my lung function hadn't shifted at all. Not even 1% up! After two weeks of IVs and all the physio and resting I'd been doing, don't get why it hadn't moved. The consultant wasn't available to see me though, so I couldn't try any other meds or anything so I had to have the needle taken out and see how I get on at home. Hopefully I can get it up through exercise. If not though, they said to just call up and they will get me an appointment.<br />
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In my last post, I spoke about a trial involving a smartphone app and recording data to try and keep patients out of hosp and notice if they need treatments earlier on before the symptoms get worse. I started this trial this morning after receiving all the equipment yesterday at the appointment. All the gadgets are quite fun to use and it's so clever how the app just picks up all the data. It's very straight forward for me as the patient. I need to do my weight, lung function, 02 and heart rate levels, activity level, give a score out of 10 of how I'm feeling and how my cough is and give a sample everyday for 6 months. I hope at the end of this my data is useful for the researchers and they can put this app in place for all CF patients- and maybe patients with other conditions. I'm sure this is the way forward!<br />
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Here are some pics of the gadgets. Just waiting for my freezer to arrive. I get to keep all the equipment after the trial finishes- including the freezer haha.<br />
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Rucksack to keep everything in </div>
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02 and heart monitor:<br />
The top number is the % of oxygen in the blood. 100% is the best- most healthy people sit at 99-100%. The bottom number is heart rate. A healthy resting heart rate is between 60 and 100 beats per minute. </div>
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Phone and the app:<br />
Once I've done each part, the right part turns green</div>
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FitBit type thing:</div>
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Looks like I'm on tag haha. I press the centre and it tells me how much of the recommended daily exercise I have done for the day. I think it's pretty much a pedometer. </div>
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Mini lung function kit:</div>
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I blow into this machine as hard and fast as I can. after the first second or 2, I slow down and continue to breathe out until my lungs are empty.</div>
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Scales</div>
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So that's that! </div>
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Now to focus on exercising more and putting on weight to try and get these lungs better. Need to be well for summer. Can't wait :D </div>
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xo</div>
<br />Johttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com1tag:blogger.com,1999:blog-1120330472624846427.post-48386130149359438732016-02-25T01:56:00.001-08:002016-02-25T01:56:17.881-08:00On the mendA beautifully sunny morning will always improve your day.<br />
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Quick update from the last blog: the orals didn't do much for me this time so I asked for an appointment to see the doc and see if I can start some IVs. For some reason the clinic has been overly busy these past couple of months and I wasn't able to get a sooner app than what I already had booked in. Soooo, 5 weeks of being unwell has obviously had quite a knock on my health. My lung function has dropped by 15% to 43%, I have lost 2KG putting me at 50KG, sats have dropped to 92% and I just generally haven't been in a good state.<br />
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The good news is, I have finally started home IVs :D I'm on day 4 and I usually get worse before I get better, but I will soon be back to my usual self- busy, eating loads, managing grooming, housework, socialising.... Cannot wait!!!<br />
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The last few days I've been feeling so low. It's not like me. I can only put it down to that after a much longer than usual wait for some meds, my body is just so exhausted and I'm getting ratty because of that. My plan today is to just stay in bed and rest; hopefully that'll do me some good. Plus the sun is out, and that always makes me happy :) can't wait for summer!<br />
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I probably should reschedule all my grooming, but I just hate doing that. I hate letting people down, and I enjoy seeing the dogs. They're all good dogs that I have booked in though, so I reckon I'll be alright. Plus, I can always ask Alex or my sister to bath them- that's the most exhausting part.<br />
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When I went to hosp, I saw a poster about a new trial-type-thing. It's a bit different from the usual medicine trials. It's a smartphone based trial. The aim is to try and keep patients out of hosp for longer- always a good thing! So the patient will be given a smartphone, set of scales, mini lung function kit, mini sats and heart monitor kit, FitBit type thing, mini freezer and a cool bag. Everyday for 6 months you need to measure your weight, lung function, heart rate, 02 levels, activity levels and give a sputum sample and send it via bluetooth to the smartphone (take the samples to clinic when you go). This will upload onto the trial database place. The researchers are looking for patterns in patient's results to see if they can detect when they are going have an infection, before it takes hold. Therefore, starting treatment earlier and not spending so much time in hosp. So I've said I'm interested and hopefully can start this trial soon.<br />
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Will let you know how it goes!<br />
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xoJohttp://www.blogger.com/profile/16357685879870224545noreply@blogger.com0