Hello,
During an appointment today my husband was weighed in at just over 76kg - end of last week he weighed 79kg. He is eating, little and often. We are so worried as we know of another patient who became so ill that they could not list him and sadly he died. This is our greatest fear now... I have organised myself and started writing things down again... We are back in for more tests this week followed by the decision meeting - to list or not to list...
Pear.
Hi Pear, is it lack of appetite or nausea that is affecting your husband? We will all find our ways of getting the calories & nutrients in. I am using chicken. Good protein & easy on the stomach, but boring. For my naughty treat it is jellies. Especially jelly beans! Iced current buns = carbs & sugar. These are probably all things you know. Eat with the eyes - what you fancy & build it up from there. Also protein shakes & meal supplements .exercise also builds appetite, not marathons, but a walk outside can do wonders. Chin up. 76 kg is still just under 12 stone. You need to focus on you & yours not what happened to "the others". Please take care.
X Cibble
He has been taking ensure which the Dietician has asked to put up to 2 a day. Also he drinks milk - lots of drink - tropical drink and water as well as trying to nibble on some dinner... Its mainly nausea... When he was really sick with the pancreatitis he was bringing up bile and also the pain was excruciating so I think all this has made it worse... He is so tired all the time - spends most of it lying down - the advice was that he needs to sit up for at least 4 hours a day to build his chest muscles and not develop infections... He does sit up for a bit...
Thank you - I didn't even think of converting it to stone! It doesn't sound as awful as Kgs...
Pear.
From experience, if your husband can start the day we'll the rest should follow. So a good breakfast will kick start the metabolism to want more later. He will need to eat with eyes, nose & willpower! Texture & the high end flavour may help. I have granola, flavoured bio yoghurt & blueberries (sweet) first with my anti emetic. Then 1 hour later a slice of toast with Marmite (savoury) with my steroids. My metabolism then takes over & I can pick to lunch & dinner, not forgetting fluids. A good source of protein that you can flavour is quorn ( vegetarian) It's Easy To Digest too. I am following all the top tips that I have picked up from my patients over the years, they are my experts now. It's different on this side - but although they will let me work - I am not feeling completely useless if I can pass these tips on to a wider community.
Had cycle 1 day 1 Gem-Cis yesterday. Long day in the chair - 7 hours! But only once a week. So far, so good. Actually slept through last night. 6 hours straight! Only side effect so far is painful calves, but I think that's my fault - best wear flats next week!
Take care Pear, you are amazing - you need to stand tall in front of a mirror & say that to your reflection every morning! As I am not there to say it for you
X Cibble
We go in today - armed with my diary and notes - hopefully will make sense of it all... We are more concerned that there is one doctor who may Veto him being listed...
Thank you so much - you have all given me so much strength to face this 
Love to you all...
Pear
Let me know how you get on. Thoughts are with you both. X Cibble
Oh pear xxxxx can they give him 'build up' drinks ?? I am not sure how much protein they contain xx I remember something called 'calogen' (don't know how to spell it - but it was like 30ml and contained lots of calories xx How is he feeling ?? It must be so hard for you to go through all this again - you are doing a fantastic job 😘😘😘 I am still writing things down 😂😂 if I lost my phone then no one would know anything !!!!!
Sending massive hugs and keeping everything crossed for you xxxxxxx
Hi hun,
We were given Calogen today - he took one bit and it didn't go further than his mouth... So was back on the phone to the Dietician who has said up the ensure to 2 a day - amazingly when I read the other post to him about the ensure effects people are experiencing didn't seem to make nasty burps seem so bad - so he has been drinking it today... I think the fear of being 'left to see what happens' and may be hold off listing has left us in a panic. Do you know - my phone died during the transplant recovery days - so now Ive written all important numbers etc in the diary. I have managed to get an appointment with the Doctor this week - I will be quite honest with her and tell her our fears and worries and see what she says...
Pear.
Hi, At first I had a load of trouble putting weight on. The consultant said to me do everthing your mother told you not to do, go to McDonalds, Burger Kings, Pizza Hut and eat plenty of fried food. Even now I only weigh 69kg but its creeping up slowly. At one stage I weighed only 55kg..I hope he puts on weight, also I drink plenty of full fat milk. Tell him good luck from me thanks..
Hello Brummi,
Oh no! That sounds terrible - what was your original weight? Before transplant?
He tried full fat - said it gave him the nasty burps bit like the ensure - so Dietician said he should drink semi skimmed which he is doing...
I will suggest the junk food - this may appeal to him...
Thank you Brummi and good luck with yours as well...
Pear
Before being diagnosed and before I realized something was wrong I was 12st 7lbs..
I don't know what to think anymore
Transplant list
Being sent for assessment
Fly high my angel no more pain
Me Again with more questions.!
