Just call me Diabeto

I have finished my 2 week course of IVs today. I was booked into the diabetic clinic (which is where the CF and diabetes docs team up basically), due to the high blood sugars. I saw the diabetic doc and nurse and they told me I have Cystic Fibrosis related diabetes (CFRD).

I'm going to try and explain CFRD, I'm very new to it all so I don't know everything about it!
So you have the most commonly known diabetes: type 1 and type 2. Type 1 is something to do with the body not producing insulin or not enough and is commonly detected in young people, who may be struggling to put on weight. Type 2 is more commonly detected in overweight middle aged people when there isn't enough insulin for the amount they are eating. CFRD, I'm told, is closest in similarity to type 1. With CFRD, we have insulin in our bodies but due to the thicker mucus around our body, the cells (I think) get clogged up and the insulin can't penetrate through.

The risk with CFRD is if it's not controlled, the bugs in our lungs will be living in paradise. Along with the warm, wet conditions in there, they will have all the sugary blood they want and reproduce quicker, causing more infections. Also, as you know I'm forever trying to put on weight; with high blood sugars your body can't absorb all the calories. Once your blood sugars go above the normal range, you will just wee out the rest of the sugar that could help to put on weight. Plus insulin can have a side effect of weight gain :D

So all in all, it's super beneficial that my CFRD has been picked up and I can start daily insulin to manage my sugars. The diabetic nurse then came in with a dummy insulin pen for me to try. Any close family and friends will know how I've struggled with my needle phobia in the past. I let the nurse do it on me first. She squeezed the fat in my stomach and pushed the needle in. It really didn't hurt at all, thank God! Once it came to me doing it I started freaking out. Getting all sweaty and crying and all the old drama I used to get. The nurse, Alex and Charissa, my dietician, were so calm and patient. I literally was shaking but I couldn't believe it when I DID IT! Probably the slowest anyone has ever done it haha, but I did it! :D :D :D So now I just need to get it put on my repeat prescription, pick it up and then I'm on my way.

Al and I love family guy, there's this kid in it called Diabeto and he has diabetes. He cracks me up! I said to Al, just call me Diabeto :'D

I need to let DVLA know that I have CFRD and check my sugars before I drive. 5 and above it fine, but 4 and below is not and I'd need to have a sugary snack or drink before so that I don't have a hypo. A hypo is when your sugars go too low. There's different symptoms, but mine are when I get hot and sweaty, my vision blurs, I can't concentrate, get really hungry and need to sit down. So obviously, it would be unsafe for me to drive when I'm like this. Diabetic people also need some special eye, foot and urine tests once a year to check different things.

Anywho, I'm now off IVs and can't wait to have my energy back! IVs take it out of me and I sleep so much when I'm on them. Got girlie catch ups planned and a cocktail making class :) Also, my weight has finally just scraped into the healthy BMI range by 0.1 hahaa :D

Jo
xo

Hosp and Harrods!

After my follow up for my annual review appointment, I'd planned to go onto IVs for a boost mid November. My chest didn't agree with this plan though, so I went on them a couple of days ago instead. My lovely friend Ashley took me up as I hadn't had much energy the last few days and my husband Alex has been diagnosed with epilepsy so can't drive at the moment. The whole starting IVs ordeal is so much quicker at Frimley than Brompton was, makes for an easier day, especially when all you want to do is snuggle up in bed and sleep! As with any trip that Ashley goes on, it was full of hilarious disasters!!! It was so funny! :'D

While I was there I saw the dietician and gave her my blood sugar results that I'd been doing for the last 2 weeks. I knew they weren't good lol. There's a range which is "normal" to be in before eating and 2 hours post. The most worry was on the 2 hours post as sometimes they were about 16/17, when they should be no higher than 8- I thinkkk...? Anyway, yeah they were too high but I asked if it could be due to my chest getting worse and she said that's a possibility. I'm to carry on testing while I'm on IVs and I need to see the diabetic nurse in a few weeks. They may decide to do what is called a continuous glucose test, which is where they put a device in your stomach- a bit like piercing your ear, they will put it in using a needle of some sort and then it will stay there. I think it's only for a few days but it continuously monitors your sugar levels in your blood and keeps a record of them. Very clever! Then if it concludes that I do have Cystic Fibrosis related diabetes (CFRD) I will probably start some insulin. It's all those Angel Delights I've been eating all my life hahahaaa.

So thennnn, the dietician came onto my bone density results. She'd got the detailed report back and, again there is like a normal range etc etc. They test the bone density in your hip and your spine and mine have dropped. It's common in people with CF because of our digestive systems not working properly and with being ill and sometimes not going outside enough due to hosp admissions, being in bed etc, we don't absorb enough vitamin D. You need vitamin D to absorb calcium- something I have more than enough of in my diet! The main way of getting vit D is through the sun, but you can also get some from food or vit D supplements. I've started an extra vit D tablet, which is soooo pretty! Really weird thing to say about a tablet but the colour is just so beautiful. Reminds me of the ocean. Here's a pic- you'll see what I mean!

Another thing I can do to improve my bones is jump 20 times a day. Super strange request but apparently the low bearing pressure will help strengthen my bones more. As we develop our bones mostly through our teenage years, there isn't a huge difference that I can make by doing these things. It's unlikely I will bounce back to the "normal" range. I will probably have osteoporosis in the next few years, but as I said, it's pretty common in CF people. Just have to do all I can to slow it down :)

Sooooo, now I'm on IVs. Had a blood test today, and have another one next week and just have to get these lungs back into gear.

For Ashley's birthday, she was given a gift certificate for cream tea at Harrods and she asked me to join her! I hadn't been to Harrods in at least 10 years. It was amazing- if not exhausting haha. Such a lovely place and all the staff are so friendly. Of course we had a good look through Shoe Haven and tried on things worth more than all the contents of my house put together! The Chritstmas bit was lovely too.

Halloween's been, hoping to be well enough to go to my aunty and uncle's for fireworks evening.

For my doggy clients this year I'm making them little bags of treats to hang on the Christmas tree. My bags came through the post this afternoon!

Finally, hopefully some of you are watching the channel 5 series "Gift of Life" on Weds eves. If it has made you think about becoming a donor, please check this link out where you can sign up. It literally takes TWO minutes! Also, let your family know of your wishes. At the end of the day, they will have the final say.

https://www.organdonation.nhs.uk

xo

Follow up appointment

Can't believe it! I'm the heaviest I've EVER been in my life! 52.10KG, so happy :D Had my follow up appointment from my annual review yesterday. Lung function was alright at 55%, weight frickin amazing, ultrasound fine, vit levels a tad low. I'm border line diabetic again, which I always am when I do the big glucose test, so need to do 2 weeks of blood sugar monitoring at home with my kit. Also, my bone density scan came back as borderline osteoporosis, so I'm upping my vitamin D intake but don't think it's physically possible to drink any more milk haha; I go through at least 18 pints a week! Overall, the consultant was pretty happy with my progress these last 6 months. I've planned to have home IVs mid November to give me a boost before Christmas and before my belly dancing show!

I've been belly dancing for about 10 months, it's so much fun! It's a very laid back class and you just do what you can, which suits me well. We have a Christmas show coming up, which I've invited most people I know to haha. Probably will be regretting that...!

Also, to get me ready for winter, I've had my flu jab. Anyone who has CF, asthma, any other respiratory illness, pregnant, elderly or really young, or who has an illness that puts them more at risk of contracting flu is entitled to a free flu jab. It's not that bad, it's just a tiny needle and is painless and over in less than a second! You might get a dull ache for a couple of days in the spot you had it done, but other than that you will most likely feel fine! 100% better than if you had the flu! If you don't meet the criteria for a free flu jab, you can also pay for one at chemists and such. It doesn't cost too much, as far as I'm aware.

Tonight (21/10), on Channel 5 at 10pm, there is a new series starting on organ donation. It's a must watch! It features a young girl with CF, whose blog I follow, who had a lung transplant. I think there is a link to her blog to the right hand side of my page. Her name is Holly.

My last post was just before my birthday, I had an amazing day with Alex and my family and had a great party with my friends :D

I'm not elfing this year, think it's getting a bit too risky with my lung function to be standing in the cold all day long for 6 weeks, As fun as it was, I'd rather be in the warm this year!

Ooooh next Halloween, then bonfire night, then CHRISTMASSSSSSS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Annual review

Annual review. Two words I loathe! The thought of loads of blood tests, tiring lung functions, long arse fasting, gross drinks, exhaustion... Never a day you look forward to!

This was my first annual review at Frimley. I'd been told what the day entails and had been worrying about it a bit. Alex was all like "it will be fine! It won't be as bad as at Brompton. You have nothing to worry about", but it wasn't helping.

I should have listened to him though.

The day was so relaxed; I almost enjoyed it- which is a very odd thing to say! As I'm not diabetic, I had to fast for my glucose tolerance test, which is when you have a blood test, drink a really sugary drink, then in Frimley's case, have a blood test after 1 hour and another one after another hour. I dread bloodtests, but thankfully they went super smoothly :D

I also had my lung function. I'm used to having to do 30-60 mins of blowing out hard and sucking in fast. It's exhausting! Frimley do it differently, and just do a regular lung function where you just do 2 or 3. It may not be as thorough, but when you've not eaten and have no energy, you are certainly grateful for it!! Miraculously my lung function has gone UP to 58%!! May only be by 2% but up is up. I literally cannot believe it. I haven't had IVs since May and haven't had orals in about a month. This hasn't happened to me in at least 4 or 5 years. I was so so sooooo happy! Who knows the reason why: perhaps because I am just creeping out of the age range where girls seem to have a really hard time with CF; perhaps it's because I've changed hosps; perhaps it's because I've changed drugs. Maybe a combination of the 3. I'm just so thankful :)

To top off my sickening-glee haha, I am the heaviest I have ever been in my life- 49.9KG!!!!!!!!!!!!!!!!!!!!!!!!!! I thought the scales must have been faulty- and so did the dietician- but she got on and said they were working. All the hard work is paying off :D :D :D :D :D

Also had an exercise test, talks with dietician, physio, pharmacy, nurses, had my port flushed and was given a new compressor (sad to see my old boy go but they said he's so old he needs to be condemned!). My follow up app is booked for 6 weeks when I will get the results of the tests and see one of the consultants :)

An update on my friend George who received her new lungs when I last posted. From what her husband and mum have posted on her facebook, I understand she has had a lot of stomach issues but has started her road to recovery and even got out of the hosp for a little bit in her wheelchair for some fresh air! I can't imagine how amazing it must be for her and her family. To be able to actually take a breath! That's how severe the poor girl's CF had become. Her mum has just written a blog post, which you can find it to the right hand side of my page if you're interested in a read.

So other than CF stuff, this week my brother graduated from Hertfordshire University studying physiotherapy and has now started his career in our local hospital. On the same day, my sister also received a call to say she had got her first paying job. She's so excited, bless her. She starts in just over a week. Very proud older sister moments!

I also have my birthday to look forward to now in 5 days time :D No doubt will blog about that after.
Until then! xoxo

P.S. Sorry about the overuse of exclamation marks(!) Miss Ford, my old english teacher, will not be impressed hahahaha ;)

SHE GOT HER LUNGS!!!!!

SHE'S GOT HER LUNGS!!!!

For anyone who has been following my friend George's journey, she finally received the lungs she so desperately needed last week. Such amazing news. A family, in the middle of the heartbreak of loosing a loved one, said "yes" to organ donation and saved George's and probably many other lives too. It's incredible! I've known George ever since I moved to adult care, about 8 years ago. She was the first friend I made at the Brompton and now to be able to read and see her go through this tough tough journey and stay as strong and determined as ever has been humbling. George still has a way to go with recovery and getting herself as physically strong as possible, but there is no hint doubt that she will carry on being the incredible person she is. YOU CAN DO IT GEORGE!! There is a link so the right hand side of my blog to her blog, if you'd like to have a read.

My health is doing alright at the moment. Finished oral tabs, when I next get ill I will probably have IVs to give myself an extra boost. Hopefully I can stay well enough for my birthday next month. I did a trial of a nebuliser I used to be on and that went well, so just waiting for the parts I need for my neb to be delivered so I can use it. Next month is also my annual review- first one at Frimley. I know they do it differently to Brompton, but still not looking forward to it haha.

Have been looking after two doggies for 2 weeks for a friend. Barney has been loving the company of other playmates. Sleeping has been a nightmare though with the three of them, 2 cats and me and Al trying a share a double bed!

Last weekend my mum, dad, sister and me went to meet some of our family who were holidaying in the New Forest. Was a nice break and really funny!

Deer spotting with mama

My ingenious plan to put binoculars infront of the camera- it worked!

 Me and daddy

Weight gain :)

I've managed to avoid IVs for a bit longer! For me, this is great news as I was becoming pretty dependent on them whilst at Brompton because they wouldn't offer anything else. However, at Frimley they are giving me oral meds when I feel I need a little boost, instead of bringing out the big guns (IVs), which I could become resistant to if I have them too often.

At clinic the other day I had put on weight too :D Up to 47.5kg. I have been having a new supplement called Skandishake, as well as the Calogen I have been taking for years. Glad to see it's actually working. Just need to keep it up and I might FINALLY become the 50kg I've been trying to achieve for about 8 years haha.

Next appointment I will be having a trial for a nebuliser I used to be on a few years ago. The hope is that by restarting this I might not need antibiotics so frequently.

In the last month we've Alex's cousin's wedding- which they were very lucky to have such beautiful weather for! The amazing Ed Sheeran's concert at Wembley, my belly dancing show and a beach trip.

Wedding

Barney at the beach

Hopefully the weather picks up again soon! Can't be dealing with a wet August.

On the grooming front, I've now dabbled a bit in creative grooming. It's a relatively new part of grooming that has made it's way over to English grooming over the last few years. A client of mine asked for one of her pups to have pink feet, tail and ears; and the other to be made to look like a panda! 

There was a great documentary series on Great Ormand Street Children's Hospital (GOSH). I think it was a 3-parter. I managed to catch up on the second episode, thanks to a friend recommending it. It was about lung transplants. 3 of the children had CF and it was very informative. The children were so brave and the hospital team was outstanding! Great awareness for organ donation and showed how it can change someone's life completely. If you have a chance and are interested in that sort of thing, it's a good watch. Was on BBC 2 9pm, I think a couple of Mondays ago.

xo

Long time no see

I've not posted in a while, a fair bit to catch up on! So, last blog I'd ended up in Frimley as an inpatient. I stayed in for a few days then was allowed to continue my IVs at home. The main reason I wanted to come out early was for my cousin's surprise spa weekend for her 16th birthday. All the girl cousins were going and I HAD to be there too. It was an amazing weekend up in Yorkshire and I loved spending time with my family.

My IVs came to an end and I went back to Frimley to have my needle removed and final bloods, lung function, chat with doc etc etc. Lung function hadn't moved at all, but doc Alex said that she was mainly concerned with the bleeding (there is an actual word for this but I can never remember it or spell it- something like heomotopsis??), so wasn't too worried that my lung function hadn't changed. Had a huge bag of supplements given to me and off I went.

Then the usual happened where I lived my life happy as larry and totes forgot about this blog haha. It always happens! I don't ever really sit down and go on my laptop anymore until I get ill, so that's when I remember about the blog. Can you see what direction my health has gone atm... but we'll get there later.

So while I was carefree and well I had a blast :P

My sister had her birthday...

And party...

Vernoica, who I dog sit for, got a new puppy, Charlie...

Went to see my cousin's architecture uni exhibition (he got a 1st in it!)

Went to good old Epsom Derby! First time in 5 years I haven't been in hosp for it :D

Had Alex's cousin's hen do...

 Have had a few bbqssss! The boys keep burning it all though hahaha

Went to see the sound of music at Woking theatre with my family

And my fur babies are all well <3

 Love summer so much! Can't wait for the rest of it :D


If you watch Eastenders, you'll know there's a new character called Jade who has CF- great awareness. Plus the BBC have been working with the CF Trust to make the portrayal of CF as realistic as possible, which is great. Lets hope they do us proud :)

So, as I was saying before, my health now isn't the best. I noticed it getting worse again, but thought I'd last at least another couple of weeks. Then in the bath the bleeding started again. Not as bad as it has been, but still not the most fun thing in the world. I decided not to wait till I could speak to the hosp, and just start some oral antibiotics that I had in the cupboard. Spoke to them this morning and they agreed and asked me to let them know if I bled anymore. So lets just hope I can nip it in the bud, keep my weight up and carry on enjoying summer!

xoxo

Frimley appointment

It's Tuesday! Therefore had my appointment at Frimley. I needed to be there for 9.30 so it was an early start. Usually mornings are better for me, but of course on this one particular morning I would feel like crap- sod's law!

I managed to get there though (first time driving myself) and the appointment was going swimmingly. Lung function had surprisingly gone up- might have only been by 1%, but up is UP! Weight had gone down to 46.something, but I'd expected that. So the doctor suggested oral Septrin for two weeks and Tria-something acid if needed. Tria-something acid (will find out the proper name) is to make your blood more sticky, so that if I were to bleed again I would take this for 3 days and it would help my blood to clot and hopefully prevent further bleeding.

Then I walked to pharmacy, waited for my meds and walked to my car. I was so happy, I got to go home to my Alex, Barney and my cats. As I was pulling out of my car parking space, I needed to cough. I had tissue and a plastic bag in the car, which I use if I'm driving. As soon as I started coughing I knew. It had happened again! I looked at the tissue and saw blood. I re-put the car into gear and parked again; got my things and hurried back to the CF unit. I told them that it had started again and the next thing I knew I was admitted. I was so upset! Purely because I thought I'd escaped admission and thought I'd be back in my own bed with my Alex cuddling me and my animals by my side. It was just a shock.

Whenever I get admitted I just worry about Alex and my animals. I'm not usually so sad about myself being in, I just wish I could be at home for my family. Alex and I are a team and if one of us isn't there or is unwell or feels down, the other doesn't function correctly. I wish I could be there to make his packed lunches and write him his little love note to go with it (soppy I know) or sit with him on the sofa, or the best part of the day- cuddling in bed and falling asleep with him. And my babies, especially my Barney bear; I know he changes when I'm not there. He isn't playful and he's always looking out the window for me to walk up to the door. Cats are more independent, I'm sure they notice I'm not around but I think they cope better than me, Alex and Barney put together hahaha!

So anyway, I've had my bloods done, an x-ray, my first dose of meds, lunch, dinner, my parent's and Abi have visited and now I'm getting ready for bedtime :) This place is lovely! Not saying that Brompton isn't, they are just two very different hospitals. Being in this room feels more like a hotel room if I'm honest. There is laminate flooring and a posh Dyson fan. The staff are also so caring, they can't do enough for you! When the team who were with me today were clocking off, they all came to say goodbye, which was so kind of them. Checking I was OK with everything and settled in.

 Dyson fan

Laminate flooring

... Was just about to end this post, and then this came in......!!!

The "snack trolley"! Full of crisps, chocolates and lollipops!

Might stay up an extra few mins to eat all this :D

xoxo

Scared!

I should have called the hospital earlier. I was trying to hold out till my next appointment but I should have just called up when I started to feel ill. I had had enough by last Monday so called to make an appointment, but the soonest one I could get was 8 days away. It's now Friday, just 4 days until I can go get some meds and it can't come soon enough.

I've tried to do as little as possible for the last week. Trying to save my energy and take it easy. It's so boring though! I like to be on the go and doing a million things. My chest is bad, no appetite and therefore no energy, going to bed at ridiculous times like 5:40pm and not waking up until gone 7am. I hate being ill so much!! 

Thursday was awful though. For me, I love sitting in the sun as it makes me feel better. The heat helps my arthritis and I feel like a reptile getting their energy from the sun lol. However, I cannot be around, what I call, "fake heat"- anything artificial such as electric fires, central heating, car heaters etc. They make my chest terrible and I will be ill for the whole day. Same goes for hot steam (only when my CF is bad), so like hot baths are a definite no no. This causes a different effect though; for some reason it makes my lungs bleed and I cough up blood. Total TMI but I can't pretend forever that it doesn't happen. 

So, as I was saying, Thursday... Weds had been such a lovely hot day and Thursday came with loads of rain and cooler temps. Alex needed to go out to collect his friend and I asked him to drop me to my parent's on the way back so I could spend the evening with them. On the journey, which took about an hour, we needed to have the car heaters on because the windscreen kept misting up. I was boiling and kept turning them off lol but Alex needed them on. I opened the window for as long as I could but was getting soaked on one side of me because of the rain. I didn't realise what affect the "fake heat" was going to have on my lungs at the time, but if I'd know, I'd have got out the car and walked home!! 

I got to my parent's house and went in and started chatting. I needed to cough really badly so went to the toilet, as I always do. I looked at the tissue and saw pure blood. It's scary when this happens but you just have to keep calm as a raised heart beat will just increase the amount of blood pumping into your lungs. When this usually happens, I will cough blood once or twice and then it will die down and I will be fine. This time, I had coughed about 6 times and just more and more pure blood was coming out. I screamed for my dad and he came running in and got me some more tissue. Trying to talk was so hard because I could feel my chest wanting to cough again and again, out of my control, to try and get the blood off my lungs. Dad tried to call Alex but his phone was engaged to I got up the number for Frimley Park and asked my dad to call them. I was scared at this point as I had never coughed up this much blood before and it just wouldn't stop. Every cough was just so much pure blood, it was horrific to see! I'm sure in my head it seemed like more blood than it actually was but I know this was at least 1/2 a pint to a pint that I was loosing. Frimley said for my dad to take me to A&E, to which I started panicking even more. It was frustrating but I felt like I'd lost control of everything and all I could think about was that at A&E they would want to take bloods or do something which involved a needle and I was freaking out. I tried Alex again and begged him to come now with EMLA cream. At this point Al had no idea what had been happening so he rushed over with what I needed. By this time, the bleeding had slowed down. I could breathe again and get my heart rate down. I sat down with my water and waited for Alex. It was such a relief when he got there; he makes everything better! 

I decided against going to A&E at this point. The bleeding had slowed, almost stopped and I felt I knew how to deal with this amount of blood. I had a restful rest of the evening and had another early night. 

Today I have tried to rest again. I needed a bath but didn't want to take any risks so had a quick lukewarm one with the door and window open so no steam could build up. It was fine, thankfully.

Now Im just counting the days till Frimley and I can finally get some meds. I know not to leave it this long in future, it's not worth the risk.

This weekend I have some fun things planned and I just hope that I can make them, I don't want to miss out. I have S Club 7 tickets for Sunday with my friends and brother and sister. It's obviously not something we can just rearrange so my plan is to sleep all of Sunday until about 4pm and then get ready and go, hoping that I will have enough energy for the evening. Luckily I have my wheelchair so I won't have to do much walking.

Will update after Frimley :)

xoxoxo

First official Frimley appointment

Friday I had my first official appointment under Frimley Park hospital's care. I know it's not fair to compare the two hospitals because Frimley has such a small unit compared to the Brompton, but it was hard not to! Great parking, no queue times, people who had time for me, it was a welcome change :)

I did my usual tests- one of them being lung function. The nurse was using a new system and she told me by FEV1 was 73%! I was astonished! I thought a miracle had happened lol. Turned out she'd accidentally told me the wrong numbers and my lung function was back down to 53%. Still alright, but not great.

I'd had my height and weight done too- somehow I've got smaller lol, but my weight has improved so with those two things combined I now am just in the "healthy" borders of weight YAY. Still need to improve, as ever, so the lovely dietician (who Alex fancies hahaha) gave me a load of different supplements to try. One of them has a bottle a bit like people who are on protein shakes. I love it, I feel so macho with it lol.

The only long part of the appointment was the xray. It's on a different unit to the CF one and the lady who was working that day was soooooo slow with everything! From walking to talking. It felt like it was taking forever- although it probably wasn't but I was so hungry by this point everything was an effort.

Next I spoke with Dr Orchard, who used to work at Brompton, and discussed a lot of things. He asked why I decided to leave Brompton, so briefly went into that. I wanted to ask him the same question, but thought that might be too personal and just me being nosey lol. He asked how happy I was with where my CF is right now; I said I felt it was alright but in an ideal world I'd still have a much higher lung function! I'm sure most people with CF would say the same thing.

Within my friends, a lot of them are pregnant or have babies etc, so Alex and I wanted to clarify where we stand on that topic and what our options are. We'd like a family sometime in the future, if possible, and we have spoken to the Brompton a number of times about the ins and outs of this topic. It's always good to hear different medical professional's perspectives and get an update every so often as to what our options are in relation to my health. Also, in case there have been any medical advances that might effect us.

With CF, and I'm sure a number of other illnesses, pregnancy isn't straight forward and I don't think it's something to jump into without speaking to your medical team. At this point in my CF, I'd just be ok to go through a pregnancy without too many complications (of course this can't be guaranteed), but who knows how well I'd be after the baby is born. I'd hate to not be able to look after my child at all for goodness knows how long. Plus actually getting pregnant will be a struggle for me. So, Alex and I think that the most sensible way to go would be surrogacy. Unless a miracle happens and my lung function shoots through the roof! Anywho, we're not there just yet, but it's always good to know your options.

Then the dreaded blood test came. I am not great with needles. At the Brompton I had a lot of work with a psychologist trying to help me, and I am much better than I used to be, but they still aren't my favourite pass-time. I get quite nervous, which I think makes the poor person trying to bleed me nervous. The lovely nurse tried once but knew I wasn't great with needles, so didn't want to keep trying and got one of the doctors. Not the most relaxing environment for me to meet one of my new docs, but eventually she managed to get the job done so I immediately liked her! My port flushes aren't usually a problem and that was straight forward.

So overal, a good appointment. I'm hoping to last another month without IVs but I can notice my health changing quite fast. It's frustrating, but I have done so much better then I had been. It must be because of the orals I had a few weeks ago. So I need to try and keep up my eating and not overdo it with the dog grooming at the moment.

Speak soon! xo

Changes

Feels like forever since I last blogged. A lot's been going on in my head. On the last post I briefly mentioned a disastrous trip up to the Brompton and since then I have been doing a lot of thinking. I hate to speak badly about people or organisations, especially when I know they only have good intentions. However, this is a very open, honest blog and I have to say how I'm feeling. It's sort of like therapy writing this because once I've written it I feel like a weight has been lifted and it's no longer filling up my brain. Like they say, "a problem shared is a problem halved".

So, the problem is is that whenever I know my Brompton appointment is in a few days I get stressed out. Usually the day before the appointment is when Alex, my family and even the dog notice it. This stressed out state will continue throughout the whole day of the appointment and calm down a day or 2 after it. So that's about 3 days of stress for just one appointment. Crazy!

It's all because of a few factors. The worst one being PARKING! OMG, it's become a joke now. First and foremost, this isn't the hospital's fault it's just the way London works. There are about 5 disabled parking bays directly behind the hospital- one of which has had a metal fence round it for over a year because a company is using it to store materials and what not for some building work. Why they needed to use a disabled bay I'll never know! Anywho, so next to those are 3 or 4 bays that the hospital actually own (the hosp have thousands and thousands of patients, yet only 3 or 4 bays of their own), which you have to book 2 weeks in advance to use on a first come, first serve basis. Other than those, there are a few other disabled bays dotted around a few streets away infront of other hospitals. If you don't manage to get those golden-ticket-disabled bays, then I'm afraid you'd have to cough up £3.30 p/h for a parking bay. It wouldn't be so bad if you knew how long you'd be in the hosp, but with the waiting times increasing, you could put on 3 hours worth, then have to go back out to put in another couple of hours on your car, just to return to the hospital to find out you've just missed the doctor. So you end up £16.50 worse off and in a crap mood.

Sorry, I feel like I'm being super negative, but it's the harsh reality :(

There's also the issue of the doctors at the Brompton. In the last 2 years, I haven't seen the same doctor twice- except for if I was an inpatient. Every appointment I have to repeat myself and my life story because they never know me, I'm just a number and a folder that they don't know personally and haven't had time to read my notes. It always gets me down that I spend soooo many hours getting there, looking for parking and waiting around just for the doctor to rush in late, give me 5-10 minutes of their time and rush back out again. I feel guilty if I have any questions to ask. It's not the way it used to be and I'm feeling like my needs are being met by them anymore :(

I know the hospital has been struggling a bit the last year or so with the head consultant, Dr Bilton being very ill and no doubt changes in laws and budgets etc. You can feel the atmosphere has changed a bit. The CF team and the nurses on the wards are trying so so hard, but the work load for them is just enormous. They have so many patients, it's no wonder my bloods have been lost, or appointments accidentally cancelled or what have you. I totally don't hold it against them and try and be as helpful and easy to deal with as possible by turning up on time to appointments, being as independent as I can in booking/re-booking/canceling appointments or getting in touch with physios, dietitians, wards etc.

So I started researching other hospitals that specialise in Cystic Fibrosis. I found one called Frimley Park hospital, that is almost the exact same distance from me, just in the opposite direction to the Brompton. I got in contact with a couple of girls who I knew went there and decided to book an appointment to meet the head nurse. I drew up a list of questions and Alex and I went to check it out. One of the first reactions I had as we were driving there was how green the area was! It was so lovely to drive through more country roads, seeing fields and animals. The air was so fresh, no pollution! Compared to the busy, polluted roads of London it was a welcome change.

Once we arrived at the hospital there were thousands of parking spaces: designated CF spaces, loads of disabled bays and so many regular bays. Even better is that it is all completely free for me and any of my friends and family who visit! I met Judith, who I believe is the head nurse of the CF unit- which is only about 110 patients compared to Brompton's 2000+ CF patients. She was lovely and answered all my questions. She reassured me that I would always see one of their 3 consultants (one of whom I used to know from Brompton) every appointment, so they're much more personal. There are many more advantages of this lovely unit, but I'd be here all day listing them.

Now is the hard part; saying goodbye to the Brompton. I feel terrible that I want to leave them. The team have helped me so much and helped me overcome my phobias. I don't want them to feel that I don't like them as individuals- or even as a team- it's just I can't be dealing with the amount of stress that I have by going there. I feel like I need doctors who know ME and have a relationship with me. I'm going to miss seeing friends up there and the CF specialist nurses like Millie, Suzie and Alan! I'll miss the lovely polish cleaning man and even though they are annoying, I will miss the "tea coffee please" people lol. The dietitians, physios, receptionists, phlebotomists. The Foulis nurses, the Lind nurses, the ambulance drivers. It's like a second home there now. But I need to do this just to see if the grass really is greener on the other side. I can always go back if I don't like Frimley Park.

Baby's arrived!

Finished my IVs on Friday after a 3 week course. So glad to have some energy back. Not sure what my lung function is as had a nightmare hospital trip on Friday, so never saw the doctor (CBA to get into that palaver, maybe next post lol). My mum's going to my lung function test for me next week though.

The most exciting news this week was the arrival of my new baby cousin, Lucy! My family and I went to see her when she was 2 days old, she is so teeny weeny but has the chubbiest cheeks going. Congratulations Uncle Mark, Aunty Lorraine, Jack and Toby xoxo

 Me and Lucy

 The family! 

 Those cheeks!!

Me and my cousins

Since my last post, I have started my belly dancing classes; it's a lot more difficult than I imagined. All of us in the group started at the same time so none of us are any good yet. It's so funny watching each other! I've ordered myself a jingly jangly skirt ;)

I've also re-joined a new gym lol. Like most people do in January! Had my induction, so will start going as from tomorrow. Need to build up my muscle again and hopefully by going I will increase my appetite and put back on the weight I have lost recently.

So now going to enjoy my healthy time while I can :D :D Byeeeee xoxo

January IVs

I seem to need IVs around the same sort of time each year: January, July, September- possibly with a few more in there too. So, as expected, I'm on IVs now. Nearly half way through and starting to feel much better. It was a rocky start this time.

I had gone up to get them on a Tuesday, which I thought was a bit odd as I usually always have them started on a Thursday or Friday, as that is when the ward is quietest for the staff and they have a side room for me. I went up and it was rammo! Patients and doctors everywhere; in the halls, in the loos, in the wards.. It took me a while to get a side room and mentioned to them I had to leave no later than 3.15 as I had a dog to groom. It was 11am that this time so thought that would be more than enough time. Turns out it wasn't. By 2.30pm I still hadn't had my port accessed- which is one of the earliest things they do when I'm there. I'd worked out there was no way I'd be able to have my IVs done, wait the hour needed to check I don't have an allergic reaction, wait for pharmacy and get home in time for the dog. So I had to leave. I was really disappointed as I was feeling so ill and they were obviously over booked so didn't understand why they had booked me in too. It costs a lot in petrol money and parking charges to get up there, not to mention the waste of time too.

Anywho, I re booked and went up the following Friday and was in and out in about 3 hours :) The ward was much calmer and wasn't over booked. That night I had my Christmas elf work do. Was lovely seeing everyone again but I was feeling so ill that I had to call Alex to pick me up after about an hour. I was really ill that night, throwing up and aching everywhere.

Glad to say I'm now feeling much better than that :) I'm currently looking after Harry the dog for a 3 day sleepover as his owner is away. All I have planned is sleeping, watching films and eating :D Can't wait ;)

I also have enrolled for belly dancing classes lol! Thought it would be a good idea for some gentle exercise, and sounds fun!

Speak soon xoxo