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 :)


Gem said...

What you've achieved is so amazing! It's amazing how much better you feel emotionally when there's a bit more meat on your bones.

You WILL get on that list and you WILL get your shiny new puffers!


Sammy said...

hi Kirsty,

i've been following your blog a little this last month and can honestly say you should be so proud of yourself for staying so strong and theweight gain is amazing!!

My boyfriend has CF and goes to papworth too and had clinic a few weeks ago and also put on weight - his lung function was the best it's ever been as was his weight so we were both just as over joyed as you were today!! i also work there so hopefully might see you about soon :-)

keep going, i know you'll get on that list soon!


Little Harriet said...

Oh wow! That weight gain is fantastic! Go You!



Mark W said...

Great to hear that you have been able to put on so much weight and things are moving in the right direction for possible listing!
It is good that you feel positive and I agree that you can do anything you put your mind to!! I really hope that the new meds help with the pain, I know how wearing that can be,things will get better I an sure:-)

cleoalana said...

Hi Kerry!
I'm new to blogspot and randomly came across your page.
I'm 27 (28 in sept) and i too have CF. Your weight gain is a great achievement, i know how difficult it is to keep your weight up when you are feeling ill. I go to Papworth for my check-ups and think all the staff there are amazing, i feel privileged to have so many people caring for me.
Another problem with CF is the fact that you never get to know or meet anyone with your condition as we all have to be segregated!
Good luck with your new meds!!

Best wishes,

Anonymous said...

I'm on sedating medication and it does get better I talk crap and go all wobbly when they kick in but i'm not a walking zombie during the day anymore. Glad the pain relief is being sorted and the megace is working it's fantastic news about your weight gain

Ruth Jay said...

fantastic job on the weight gain! that's really amazing, you've worked so hard at it, so good to see it making such a difference.

Those drugs are there to help you, and as long as you remember that you will be fine (although I'm sure you know that anyway)

keep it up chick, the list is within your grasp now xxx

Miss Kitty said...

You seriously rock, girl!!!
May your life be enlighted with positive feelings!

I keep my fingers crossed for you to get on the transplant list! :)

Best wishes fom Germany!

mogzi said...

The weight you have put on is amazing! I'm glad you feel better for it too! Keep it up and with the positive attitude you will get there! xxx

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