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!
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.
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 :)
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.
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.
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!
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.
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.
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
Until next time! xo
Tuesday, 9 August 2016
Wednesday, 3 August 2016
The last few weeks
I 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.
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
I was also out for my daddy's birthday, which was great.
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!!!!!!
I have my family holiday to Suffolk in just over a week, so I'm hoping I will be well enough for that too :)
Until next time xo
Me and the most wonderful, most selfless man in the world <3
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!!!!!!
I have my family holiday to Suffolk in just over a week, so I'm hoping I will be well enough for that too :)
Until next time xo
Thursday, 21 July 2016
Ohhhhhh...
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.
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.
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.
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 :/
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!
Until next time xo
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.
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.
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 :/
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!
Until next time xo
Sunday, 17 July 2016
My 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!
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.
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.
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.
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.
I have another app in 2 and half weeks, so fingers crossed I can maintain or improve even more.
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
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!
My uncle is running the Great North Run for the Cystic Fibrosis Trust and his link to his page is:
https://www.justgiving.com/fundraising/Mark-Hashim
One of my bestest ever friends Ashley and her cousin are skydiving for Lupus UK and their link is:
http://www.doitforcharity.com/AshleyChapman
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
Until next time xo
My Alex's birthday
Al's birthday BBQ
Al's birthday BBQ
Al's birthday BBQ
Gorgeous flowers from one of my dog grooming clients
Pip and Poppy, 2 dogs I groom
Beautiful roses from my wonderful neighbour
Groomed my baby bear
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.
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.
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.
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.
Our first drive- to the chemist haha
Celebratory meal with Alex, my brother, sister and Emma, Tim's girlfriend
Emma is well and truly part of the family now! :D
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!
My uncle is running the Great North Run for the Cystic Fibrosis Trust and his link to his page is:
https://www.justgiving.com/fundraising/Mark-Hashim
One of my bestest ever friends Ashley and her cousin are skydiving for Lupus UK and their link is:
http://www.doitforcharity.com/AshleyChapman
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
Until next time xo
Monday, 27 June 2016
I'M COMING HOME!
I'M COMING HOME!
Tomorrow, after 6 and a half weeks I will be HOME! I'm ecstatic :D
Let me backtrack slightly though...
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!
Me leaving MADU for the CF Unit
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.
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.
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.
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.
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!
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.
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
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
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
Monday, 20 June 2016
Small update
Helloooo,
I'm still up on MADU- but not for long yay :D Shall get to that... (keep up the suspense, ey).
Not a huge amount to report as still not really any change, but I am feeling over my highs and lows moment :)
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.
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.
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.
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.
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 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
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
Me, my uncle Phil and cousins Tamsin and Emily
Me and my friend's wonderful mama Paulina and her partner Clive
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
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 :)
https://www.justgiving.com/fundraising/Mark-Hashim
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 :)
https://www.justgiving.com/fundraising/Mark-Hashim
Until next time xo
Wednesday, 15 June 2016
Highs and lows
Warning: long post alert!
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.
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.
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...
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.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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!
Until next time xo
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.
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.
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...
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.
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!
The Power Glide- covered as it cringes me out.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
Until next time xo
Subscribe to:
Posts (Atom)