A weighty issue

Thursday, September 04, 2008

There were a lot of things that I wanted to write about today.I have some additions to make to my Transplant Wishlist, and to share a lovely day I had last week courtesy of my best friend, but I think they will have to wait till next time now as there are more pressing matters .

Yesterday was my 6 monthly check up at Harefield, which involved a very long day and lots of tests. Despite being on the list for 14 months I have somehow managed to miss out on meeting the head transplant doctor (Dr C) until yesterdays visit. He seemed a very nice man and someone who is very fair and personable, I think that I would feel very safe under his guidance and get on well with him.

However yesterday he had to tell me some pretty harsh informaion which I'm still finding very hard to deal with today. Basically, my weight has declined slowly again and I desperately need to put on some weight soon or I will be removed from the active transplant list.

The Dr laid it on the line to me. In his words, at my current weight, "I am seriously increasing my chances of not surviving the post operative period". In order to survive such huge surgery and the possible complications in ICU I need to be a much higher weight than i am now, and give myself (and him) a chance to get me through it.
Thankfully, he has NOT removed me from the list at this time(something I am unspeakably grateful for), but wants me to let them know if there is any change in my weight status. I am on very thin ice.
As I left the consultation room I began to cry and have been on and off ever since. I'm not in any way blaming him for expressing the facts so plainly, it is his duty of care to tell me the facts and severity of the situation. It is unbelievably hard to cope with though.
For my whole life, keeping well has always been my top most priority, I can count on one hand the times over my 21 years when I have missed physio or tablets. 90% of my day is dedicated to tretments, etc. At this time especially, my reason to get up each day is to keep well until my transplant, I cannot begin to describe how much it means to me. The numbers of my lung function speak for themselves, I am in dire need of those lungs to come very soon.

I know many people would think "thats simple, just eat more" or list fatty foods or supplements to gain weight, you would be forgiven for doing so. However, you have to know my situation to fully understand it. For many many years I had problems with my tummy and have always had trouble putting on weight right from the word go. I would be vomiting well over 15 times a day, Every Single Day.
After years of testing I am now on a cocktail of drugs which help a lot, but eating is still very difficult for me as I get full extremely quickly, and many rich,fatty foods make me sick or ill. My stomach dr is fantastic but with the best will in the world, he cannot provide drugs that aren't available, (there were several tablets that made a huge improvement but they were removed from the market as "too high risk").
Overnight feeding may be an option but for various personal reasons, I dont think this would be a viable answer for me. I know it sounds as though I am being intentionally difficult and awkward but I am the one who has had to deal with my stomach problems on a daily basis and after all these years, I know better than anyone what would help me to gain weight and what would simply cause more problems.Therefore typical weight gaining tips are not necessarily an option for me, and makes gaining weight nigh on impossible.

I am feeling pretty numb today. Although I knew all the facts, hearing them was one of the hardest things I've ever had to hear. I know that I have been trying as much as posible but I still feel as though I have let myself down in some way. I am determined to improve my weight and hopefully I will get there in the end. My life seems to be breaking down at the moment and as fast as I try to sort one thing something else becomes a problem.
I only have to cast my mind around to find people in worse situation to me. It helps to put things in perspective and to count my blessings.
In the meantime I will keep on trying my very best with renewed effort and keep you informed of my progress.
Sorry for the bad news.

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  1. I'm so so sorry to hear it did not go well yesterday, I was so hoping it would give you some reassurance. This is not over yet though young lady! You are a very determined woman and you will get to where you need to be with your weight - I have more faith in you than you can possibly imagine!
    In the meantime, please know we love you very much and are right here with you every step of the way. If there is anything at all you need, just let us know with your best piratey Arrrr !
    Much Love. Sally xxxxxxxxx

  2. keep your chin up, we will all be praying for you to find a way to keep the weight you have and to even find a few more pounds that you need. To bad there is no such deal as a fat transplant, i could just donate you mine!
    in the mean time please know that we will be sending lots of prayers for your new lunds to come as soon as possable.

  3. Hi Tor,

    First of all I am so sorry to hear that yesterday's visit was not a good one. There is absolutely no reason why you should feel that you have let yourself down either, weight gain is a nightmare and as you said, only you can determine how best to try and overcome it a bit. Have you been a bit more stressed since your last visit with your uni work? if so, and you haven't mentioned that you have become ill, it could be that. I know it's a long shot, but if you are doing everything the same and you haven't been ill with an infection (by the way you've done extremily well not catching nothing! Brilliant!) just try and continue your eating the way you feel best and just really slow down with any stress induced activities.

    You know i'm waiting for that title to come up 'Tor got her call' and i know it will, just keep doing what you feel you can. YOU WILL GET YOUR TRANSPLANT TOR.

    All my love, Kim xxxxx

  4. hey sweetie,

    Sorry to hear you had a tough appointment. The only thing I'd say about your view on tube feeding is you are sort of ruling it out without even trying it? Your right it might not be suitable, but show them you've tried it, that you're willing to give it a go. I think it is absolutely vital to try every single thing you possibly can, whether you think it'll work or not.

    Also I had that same problem of getting full very quickly so I ate about 7 tiny meals a day, and snacked in between!!

    What supplements are you on? I used a powdered supplement called polycal which is literally powdered calories so you just add it to things you are already eating and drinking. This was great as it meant I could up a glass of squash by about 40 calories with ease.

    Whenever you do eat anything, what could you do to just up it a tiny bit in calorific value? Add butter? fry it? drink milk not water? Every tiny bit is a bonus.

    Keep trying honey. It's hard work I really do know it is, but you can do this. xxx

  5. Hunni I have nothing useful to say on the eating front because I know just how hard it is for you. The only thing I can add is that Chris was told he had to have a peg feed in order to be listed. He was very unsure due to acid reflux and a stomache that had shrunk considerably but he agreed and it did work amazingly well.

    I'm praying for you and as always sending the biggest (((HUG))) and loads of love.

  6. I hope and pray you are feeling better. sending lots of good thoughts, good intentions and prayers your way

  7. Hi Victoria, I hope you aren't feeling like you have let yourself down. I think you should be very proud of yourself. Remember how strong you have been to get where you are now and that with every passing day you are growing stronger in spirit and moving towards a better future.

    James x

  8. hey
    i had trouble when i was younger putting weight on, and i didnt want the tube but the doc said he would take my parents to court if we both refused!!
    so i snacked a lot - cos fresh cream and things like that make me feel ill.
    so i had nuts, (sometimes tricky when have a cough)! and i always ate before bed as i heard that best time to put weight on.
    also sweets? cos even then its still some sugar
    im sorry that it didnt go as you hoped, but least the doc giving you a chance, and he was nice

    text me whenever you want, i mean it!!

  9. Hey sweetie, I'm so sorry to hear what a difficult appointment you had and how much you are struggling with your weight. I'm sending you the biggest possible hugs in the world.

    I managed to put on a stone last year which I desperately needed as I was pretty thin. The way I did it was through using a powdered supplement called Maxijul (another brand name for the product Polycal product that Emily mentioned).

    I swear that this powder is COMPLETELY tasteless - you can put it into drinks (even cups of tea!), in soups, yoghurts, casseroles, everything really. In fact I didn't even know that my hubby was putting it in everything and I couldn't work out why I was putting on weight. I had a real aversion to powder supplements because when I was a child they tasted horrible, but the new ones really don't taste of anything.

    Also, have you asked about being prescribed a drug called Megace? Quite a few CF people are on it as it helps you put on weight. My Mum also takes it (but for other reasons) and she hates the side effect of the weight-gain because it is so effective!

    I'll be thinking of you lots and lots and sending lots of love and weight-gaining vibes! BIG hugs xxxx