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.