Wednesday, 22 February 2012

Weight Gain & New Tablets.

My weight at clinic today was the highest weight I've been in the last 3-4 years. It was 42.5kgs (6 stone 10) to most people this is still tiny lol, but I was 31kgs before I started gaining weight which worked out at a very rubbish, 5 stone!
My BMI is now 17.2, it's still not 18.5 (healthy) but if you compare that to what it was in January 2010 which was 13.3, it's a huge increase!
In total I have now gained 1.9 Stone.
I'm going to be be totally honest, I never imagined I could do it, I was positive and hoped I could, but I along with my CF team thought it was quite a difficult target to reach in a potentially short space of time..
They told me I needed to gain 2 stone and get to at least 43/44kgs, back then my weight was dropping day by day and I didn't think I'd ever get it anywhere near what it was today. It all started by sorting out my diabetes, my blood sugars were not very well controlled and that wasn't helping my weight at all, so I worked really hard on getting my average blood sugar down, which I managed - from 15% to 9% it still needs work and I know it isn't perfect, but from being that high, it's now pretty good for me. The transplant team like to see improvements and that is a huge one.

The rest of my weight gain has been down to a tablet called 'Megace' my friends with CF, particularly people I spoke to on the CF forum had advised me to ask about it because they said it was literally a wonder drug and I believed them after they gave me all their stories, so I really wanted to try for myself. At first, Papworth were very reluctant to give it to me for a number of  reasons but whatever the potential side-effects could've been, what it has done to my weight is worth going through anything (I haven't actually had any side-effects other than irregular periods, which isn't too much of a problem anyway)

To anyone who is struggling with their appetite, even if you feel you could use a little boost with your weight, ask for Megace and fight, fight fight. I had to put up the biggest fight to get it prescribed and my dieticians still refuse to believe my weight gain is due to the tablet, but I don't care because I know and now the numbers speak for themselves.
It was the best thing I've ever fought for, if I hadn't done it I don't think my weight would be anywhere near where it is now and I'd be nowhere near the stage I am in the transplant process.
Not only has it helped that, but it has also made me feel so much more confident in my body, I was literally a walking skeleton, when I look back at photos I look horrible and I'm embarrassed that I ever felt 'okay' looking that way. Now I have boobs again, I have a bum, my skinny jeans look tight on my legs and I enjoy buying new clothes now because I'm so much happier with my body. I've always been thin, so I know I'm not going to look 'fat' and to most people I probably still look thin and a bit boney, but I am a lot happier in my skin now I have this extra weight on me!

I had clinic today and I have started on quite a few new tablets recently, 12 hour morphine twice a day, two tablets of diazepam at night for sleeping/relaxation then also taking 1 tablet during the day for my anxiety. I'm also on two other pain-killers, one for general pains and the other is an anti-inflammatory for my arthritic pain and today I've also been started on Oramorph which is a fast acting morphine to take during the day/night.. So hopefully I will be completely pain free soon lol!!
I am suffering with all these tablets though, particularly confusion and obviously sedation, I'm very tired a lot of the time but I must admit, it's amazing to finally be able to get a good night sleep! Also I can have a break from the pain, the only thing is I keep talking a load of rubbish apparently and I'm a little off-balance at times, it's quite entertaining to other but a bit weird for me, like on Saturday night my puppy Milly told me she wanted to go into town, I'm also talking in my sleep (something I'd never done before) it's madness haha! I'm officially insane :D

I'm still on 3 IV's for another 2 weeks then we are hoping I can have a break with the intention of staying off IV's for longer than 7 days, but we will see how that goes! Perhaps if all these tablets start working together, I won't need to depend on IV's so much and if I'm not in as much pain, maybe my chest will not be so difficult... I'll keep my fingers crossed.

There was another not so nice conversation again, the 'end' was brought up.. I was asked (if it came to it) whether I'd prefer to be at home or in hospital to die and after a lot of consideration, I decided I'd definitely want to be at home with Josh, my family, in a comfortable surrounding with my little baby pups by my side.
It's a tough thing to think and talk about, but at least I've now told them and they are now going to contact our local services/hospice to see what care they are able to offer should this need to happen.
But as I've stated possibly a million times now, I am not going anywhere :D!!!
Yes, I know I'm struggling more and yes, I'm now on the so called 'dying drugs' but, I still have as much, if not more, faith that I'm going to get on the list and get my transplant. I believe now my weight is better I have an even better chance of getting on the list in April and those lovely new puffers will be mine :)

Times are tough and I am going through a very rough patch at the moment, but it is Winter and I do suffer more during the colder weather. I think if permenant IV's are needed that will obviously help and hopefully these tablets will continue easing my pain and suffering and things will start to look up again.

I am feeling so unbelievably positive today because of my weight gain, it has made me really believe in myself and the fact that I can do anything I put my mind to!

Thank you for reading :)

Tuesday, 7 February 2012

I'm Still Here!

Firstly, I want to thank everyone who commented on my last blog post, it wasn't the easiest post to write but I've said from day one I want my blog to be very honest, telling you guys about the good and the bad times. I appreciate it couldn't have been easy to read either, but thank you for the overwhelming support. It has been absolutely fantastic, knowing so many people are really rooting for me and are 100% behind me gives me the motivation to carry on fighting this evil disease. I will, of course, continue to stay as positive as possible and keep my fingers crossed I get on the list as soon as possible :)!

Sorry I havent blogged lately, it's just that I haven't done anything 'blogworthy' I will have been on IV's tomorrow for 3 weeks, I will decide whether I will continue for one more week or not at clinic tomorrow, I'm not 100% sure what is best because although I'm not in as much pain (thanks to my new pain killers) I am still not right, my cough has become very chesty over the past 2-3 days and I'm now feeling a lot more tight chested, but sometimes IV's can do this so I am in two minds as to what will be best, I will probably ask their advice and go from there. I do think I could potentially have the early stages of a cold, but again time will tell.

We had some friends round on Friday night which was nice, people think I don't want company because I'm unwell most of the time, but it actually does the opposite. Imagine if you spent every single day feeling ill and you just sat around at home, in your pjs, doing nothing. Basically, it makes me feel like everyday is the same and all I have to think about is feeling rubbish, when people come to visit, I like to get myself dressed, maybe get a takeaway in and have a good old giggle, which takes my mind off being ill. So it's a good thing.. Of course there are times when I do just want to sit in and do nothing and going out is a completely different story, I find it very difficult to go out to visit people/attend things because in my own home, I have everything here I could possibly need if something went wrong, also it is more effort to go out. So if you would like to see Josh and I, it's best to come round our house and see us :) and as long as I'm not practically bedbound, then we love visitors, as do the pups!!

Speaking of the puppies, I've made them a facebook page. I kept adding photo's to my wall of them and my facebook was getting filled with beautiful puppy faces, so I thought if I made a page for them, if we have any photos/videos/updates on the pups we can do it there, all you have to do is click 'like' and you will be able to view the page and see all the photos etc. we upload.
Milly & Tink's Facebook Page
I'd love it if we managed to get lots of likes on there (and so would the pups haha!)

Thanks for reading!