Monday, 26 September 2011

Weight Gain Update!

I haven't said too much lately on my weight gain, because prior to this past week or so, I had hit a bit of a wall and hadn't gained much weight, I was starting to get a little down about the lack of gaining weight that was going on and at times I thought I'm never going to get there, but of course I still soldiered on and worked my little butt off and here is what has happened in the last 10 or so days.

I started Megace 10 days ago and the biggest impact it has made is my meal portion size - I would've usually had a half-hearted attempt at a 'meal' but now my dinner is probably double what I would've previously had, then I'm having seconds, even thirds! Which for me was unheard of!
So it has made a huge difference on how much I eat and I've been told it can take a while to see the full benefit, so if my appetite continues to increase I'll be eating loads soon :D

I've also been using Pro-Cal powder in all my food again mainly started this about 10 days ago too, it's a flavourless supplement which can be mixed into all types of food. I've been having it in things like lasagne, korma, cupcakes, hot chocolate etc. I've been really working hard to incorporate it into my meals, one sachet is 100 calories and I'm allowed 5 sachets a day which is obviously an extra 500 calories - So I'm really working hard with this, or should I say Josh and Mum are :) lots of big meals for me!

Anyway, here is the bit you all want to read...........
10 days ago I weighed 37.7kgs and today I'm almost 40kgs, which is about a 4.5 pound gain!! In 10 days!! Wooooooooooooooooooooooooooooooooooooooooo.

I'm shocked that Papworth were so reluctant to give me either of these things, they don't give Megace out to their patients and when we asked about the powder they said 'they prefer not to give it out because it doesn't add too many calories' ... Well I think I've proved that every little helps and anything that could potentially help my weight gain is worth trying!

So here's to me being a whale very soon...
And if I don't become a whale, at least I might get on the transplant list?

Thursday, 22 September 2011

IV's, Side Effects and A Potential CF Cure Update

I went to clinic yesterday which I had brought forward due to how unwell I was feeling, they pretty much could tell right away I wasn't well as I could say one word, then had to take a breath, say another word, take a breath, literally every word was exhausting, I also struggled walking from my clinic room to the weighing area which is a probably a 20 second walk, lol. Took me about 5 minutes! Terrible. Also my wheezing was very loud, with every breath came a high pitched crackle which might I add is soooo annoying, imagine trying to sleep at night and all you can hear is this wheeze, grrrr. Anyway, I didn't have to say much, my numbers spoke for themselves and they mentioned IV's immediately. I didn't want to stay in hospital because my Mum is on holiday this week and I hate being an inpatient without my Mum there to visit/support me I do have Josh and my Nanny and Grandad who visit often. But I said I'd like home IV's then if I don't feel that I'm getting the full benefit from them at home, I have to go back to clinic on day 7 and day 14 of IV's, so I can change my mind, or perhaps have a 3-4 week course of IV's to really kick this awful infection that has a nasty grip on my failing lungs.

Now what some people might not know, is that with IV's comes nasty side-effects, it has become apparent lately that the sicker I am, the harder the side effects hit me. When I wasn't this bad, IV's used to make me feel a bit cold-like on the first few days, then I'd pick up. But this time, for example, I've been sick 4 times since my first dose Wednesday afternoon (it's now Thursday evening) I had a terrible migraine, which left me with a pressure-headache which in turn caused a nasty nose bleed (something that's only happened to me once before) I've felt very lethargic, dizzy, faint and I don't have much co-ordination so last night I walked into a wall, yay. It's very difficult giving yourself something knowing exactly how bad it's going to make you feel, but I'm just trying to focus on the good - unfortunately I'm now so bad where IV's don't make me 'better' but they do pick me up a bit, my chest calms down a bit more, my lung function rarely increases but my infection levels do usually drop a bit. So there are some benefits in amongst the evil-ness that is IV antibiotics! There was one good thing which was that I had my PICC in still so didn't have to worry about needing a line put in my arm, which usually causes me stress to the point I delay IV's which is never a good thing when you're this sick.

I did receive some good news which was that I had gained weight! I started the Megace tablet a week before clinic and my appetite has definitely increased and the weight gain proved it! Always good news, it keeps the doctors/dieticians happy and it makes me feel my hard work is still paying off, however big or small the increase, it's still a gain, not a loss and not sustained - It's better! Yay :)

I'd like to finish on a subject which is obviously quite close to my heart, it's something called 'Gene Therapy' which could potentially cure Cystic Fibrosis. I wouldn't have any benefit from it because the point of gene therapy is to stop you getting any worse but because my lungs are so damaged and scarred I would still need a transplant and that is my only option. However, I have many friends with CF who don't deserve to get to this stage and if there is something that could end the suffering and stop new babies being born with this awful disease, then I'm going to do my best to help it.
Millions of pounds have already gone into funding this cure, but they are £6,000,000 away from where they need to be and the researchers have been given 6 weeks to find the money or the whole thing will be scrapped, ending all hope for people with CF who have put so much faith in the fact there is a potential cure out there.
It has been trialled on people so it is quite far into the research, but without the money, there will be no cure, which means my friends, my fellow CF sufferers and the 5 new babies are born with CF each week, well this could save their lives.
If you have any money, literally pennies, any contribution towards the target would help massively. So if you would like to donate, please visit the link below and I am thankful on behalf of the entire CF population if you choose to do so.

Cystic Fibrosis - Gene Therapy Appeal

Thank you for reading, I apologise this blog has been quite long but I do tend to ramble on!

Wednesday, 14 September 2011

Clinic and Bad Times.

Last Wednesday I had to attend clinic to speak about Harefield and as far as I am aware, my transplant referral has been sent off. It wasn't a very good clinic to be fair, I had a few issues I wanted to bring up and it didn't go down well, but I've come away from them knowing I said what I needed to say.

There is a tablet called Megace which is used to treat breast cancer but it has a huge side-effect of weight gain, so other CF centres prescribe Megace for patients who have very small appetites or need to gain weight. To me it sounded like a tablet that could benefit me but when I asked Papworth they said they preferred not to prescribe it to their patients because it can stop periods and cause hormonal problems. So I felt annoyed that most other centres prescribed it yet I couldn't get it, so I put forward a huge case using my friends experiences with how much weight they'd gained and the amount of people who said it was a wonder drug outweighed the people who said they had any problems, to me having no periods will be a blessing in disguise ;)! So anyway, it worked and I got the tablet and although we had a few 'issues' finally getting the prescription, I think they were very reluctant and therefore not very co-operative, I finally managed to collect Megace from the chemist yesterday! So far I'd say it has increased my appetite, I literally could barely touch food just lately because I'm feeling so ill I'd have half a normal portion for dinner and the odd snack. Already today I've had two 'normal' portions of lasagne, lots of cakes and other snacks then on top of that my supplements, so it's definitely done something! If this tablet works for me as well as it has for others, my weight should increase and I will be one step closer to transplant.

Now on to where I am right now.
My weekend away in Blackpool had to be cut short because I was very unwell, I was experiencing severe lung pains and could not stop coughing, then on Sunday I woke up and my arthritus had flared up badly, I couldn't hardly walk at all and then the lung problems on top of that meant I needed to come home.
Then on Monday night, I dragged myself out of the house to go to poker because I'm very stubborn and even though my body is saying no, I persist on saying yes. I was okay while there, I'd taken pain-killers so I was at ease a little but still wasn't feeling great.
However, then when I got home I felt this odd feeling which feels like water spreading across my lungs and a constant crackle which doesn't ease, that's when I knew I was having a lung bleed and sure enough, next thing I know my mouth is full of blood, it was quite a nasty bleed and was probably my worst one. It made me dizzy and felt a bit faint, but it did ease the pain a little bit. I still felt horrific though.
Fast forward to last night, I suddenly got stabbing pains in my right lung, I've had pleurisy before and the pain felt very similar to that, it's by far the worst pain I've ever experienced, I will say this - pleurisy is evil.
On top of all that drama, I'm coughing non-stop, completely breathless, in a lot of pain and feeling downright awful.

But at least I'm hungry....

So, not really a fantastic blog but there are small elements of good news in amongst this - the Megace and the appetite increasing, hopefully the effects will continue to improve and I'll be permenantly attached to the kitchen lol!

Apologies this isn't a great blog, but everyday isn't always great for me and I definitely feel I'm going downhill quite rapidly now, so my need to gain weight is getting greater by the day but thankfully Josh has been Godsend the past few days and I don't think I'd have made it through without him <3
Thank you for reading.

Wednesday, 7 September 2011

Harefield and General Life Really..

Monday I attended Harefield hospital for an 'informal visit' meaning I had a look around the hospital, met some of the transplant team and also get a feel for the area.. So it was just to get an idea of whether I wanted to go there for transplant basically and the answer is YES!

I was really impressed with Harefield, the transplant clinic was very spacious and modern-looking, ITU (intensive care) was scary and very surreal knowing (hopefully) the next time I have to go there would be straight after my transplant if everything works out the way we hope! I also looked around the wards and met the transplant co-ordinators.

The co-ordinator I met was so helpful, after showing me around the hospital we all went and sat in the canteen for about an hour discussing all things transplant, she answered a lot of my questions and put me at ease. I feel I am making the right decision for me and my future going to Harefield!

I'm off to clinic tomorrow where I will be telling my consultant that I am definitely ready for my referral to be sent off, once Harefield receive it they will either contact me if there are any concerns (for example my low weight, however they said they accept people on the transplant list with lower bmi's if they have put a lot of effort in, or worked hard to get to where they are) So I may be okay and then I will get an appointment for my pre-assessment which is a 1 day appointment, lots and lots of tests in the morning, then a meeting with the Doctor in the afternoon to discuss where to go from there - if they believe I am a good candidate for transplant I will be invited to attend a 2-day assessment which is even more tests, lots of important chats and then I would find out whether I would be listed for transplant or not.

So very nervous, but also kind of exciting times ahead.

One of my lovely CF friends, Sophie, had a double-lung transplant 2 weeks ago and is still in Harefield, I went to say hello but bless her she was sound asleep :) but it was nice to see her and also to know that she is doing well in her recovery! So I wish her the best of luck to keep up the amazing work and hopefully I'll bump into her at Harefield one day!

I also did some work with the Live Life Then Give Life charity today which meant I got to meet the wonderful Emily, who was so lovely, Emily is almost 5 years post-transplant who also has CF - we are sort of allowed to mix as she no longer has CF, but because I can make her unwell we kept our distance :) But it was great to meet her and see how well she is doing!

So had a good few days, once clinic is over tomorrow I can have a rest day on Thursday before Josh and I head off to Blackpool for our anniversary. On Friday we are travelling to Blackpool with a stop off at TGI Fridays for lots of calorific delicious food.. We are then going to watch Ipswich V Blackpool on Saturday and going to the pleasure beach Sunday (weather-depending) if it is a horrible day we will go shopping at the Trafford centre in Manchester instead! So I'm going to be one exhausted girl next week but I will hopefully enjoy myself and the suffering will be worth it, lol! Of course I will be taking my wheelchair and oxygen, I'm not going to wear myself out as that would be rather silly! Haha.

Thanks for reading!