My husband recovered from the Pancreatitis and is now home. He is still very poorly as he is dropping weight at a rapid rate. He has lost a total of 30Kg so far and is losing around a kilo a week. He is trying to eat but is finding it so nauseating. The Dietician saw him and she has given some sound advice on what he should/should not be eating.
I have heard so many patient carers describe themselves as being 'disorientated'. I definitely am. I have gone back to making lists and keeping a log of what's happening. The plan is that he will have 2 more tests this coming week and will be discussed at the meetings at end of the week. If he continues to deteriorate we may be visiting the hospital more that the 2 planned times.
It sounds awful but we are so embarrassed in having to turn up every so often to A & E or the Ward. The team are superb and so supportive. I feel like its something I'm not doing right at home is why he keeps ending up back in. I work and my job is my sanity... I have thought of leaving but feel that I will go mad without it... My workplace are amazingly supportive and give me so much strength to carry on...
Sorry for the rant...
A very disorientated Pear.
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pear-shaped
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Pear, it is your absolute right to be disorientated and to use this forum to rant. You are not doing anything wrong! It is the disease & it's symptoms. You need to keep your own identity, so staying at work for as long as you can will be the most benefit for both you and your husband. All too often carers get lost in the scheme of things & this can have a negative impact on everything else that is happening. I have been a carer & now am the patient. Two completely different roles! You will worry & be there for your husband no matter what, but you have to take a deep breath & focus on who you are & what you need to keep you sane & physically healthy. Otherwise you will both be in the hospital! X Cibble
I do feel exactly like that... My husband is happy for me to be working as he knows it is more to keep my sanity and give me a release.
My kids do feel as lost as I am and I think we all need to be keeping everything else in check... They have exams coming up and need lots of support with it all...
Pear, I am sure you have support from the schools with the children, but do not be afraid to push for more. They are best placed to see the needs & extra support that the kids could need. Let them help. We cannot do it all. Try & have a relaxing weekend. Clear the decks. X Cibble
The schools are really supportive - but like you say it all comes from asking - I will email their teachers today so that they pick the messages up early... You have a restful weekend too Xxx.
Pear
Oh pear xxxx don't feel bad - the hospital won't think for one minute your doing anything wrong - you most certainly aren't !!!! I know how you feel and I thought exactly the same - and I was a trained nurse !! There is only so much you can do at home 😘😘😘😘 Weight - is he eating anything ?? What has dietician recommended ?? Could you not perhaps consider some respite care or perhaps a 'longer stay in hospital' ?? - I know when Rob was very poorly I used to prefer him in hospital rather than at home as I could relax a little knowing that they had all the correct equipment (even with all the disasters) - I know working is 'sanity' but maybe a bit of 'time off' ?? Just to recharge and prepare for the next instalment xxxxx There is no way I could of carried on my work (looking after others) while Rob was bad - I couldn't devote all of my attention to 'patients' while worrying about him (I gave my job up for the patients not for Rob - if that makes sense) xxxxx You have been through so much and are doing fab xxxxx but we must remember to look after ourselves also or what good will be to them if we are 'frazzled' xxxxxx lots of love and best wishes 😘😘😘😘😘😘
He has lost so much muscle mass as well... We have been given a diet booklet of what he needs to be eating - lots of calories to build up his reserve for when he goes for transplant...
He is also itching - which can become chronic...
I have reduced my hours so that I can take him to clinic etc. Also I was off for about 8 weeks when he went through the last tx. My workplace have agreed that I can do the same again. Also if needed, I can be off for longer periods. Like you say it is going to be a long road and I cannot afford to get frazzled - especially as my kids need me just as much...
Pear can the docs not supplement his diet with fortified drinks such as Ensure or Fortisip to help him build up his weight and strength again. Have you asked? Has anyone mentioned fortified drinks?
Pear, this doesn't sound right if they've only given a diet leaflet, your hubby should be on the supplements that Bolly mentions.
After hubby's transplant assessment they immediately started him on 4 Ensure 2cal supplements drinks daily to start to build him up for transplant as he was sitting about 8 1/2 stone (5ft 5). They wanted him to have gained reserves for transplant. He gained weight and muscle quickly and is now maintaining at 11 stone and they are amazed by it, so, much so they've basically taken him off the drinks though he still takes one daily for his supper.
Your hubby is much more poorly than my man and I would have thought the supplements were essential, he isn't going to get much goodness from normal food if his appetite is lacking and the new liver not working sufficiently.
I am suprised they've let him home at all, I would have thought at the least he'd need supplements or even nasal gastric feeding to make sure he is getting all the goodness he needs and that he needs monitoring with that liver not being good.
I would have hope that they are going to make his relisting decision immediate and put him on the urgent list seeing as how long it took to find the first liver for transplantation.
No wonder you are in a tizzy with all this going on just after you'd hoped he'd be on the gradual if slow road to recovery.
Look after yourself, our thoughts are with you a lot just now and my hubby is rooting for yours to get a good new liver ................ we are still waiting but in no hurry as hubby is 'holding his own' and apart from chronic fatigue isn't showing many symptoms (touch wood!). Ultrasound for us this Wednesday so fingers crossed they don't find any scaries on that.
I am trying to get him to drink the ensures - like you say he needs the reserves for this next one... You'd think that I would be prepared and all with doing it all once -but I feel all over the place!
I do hope all goes well at the US scan for you and it brings positive news...
Does he like ice cream Pear? Ensure can be mixed with ice cream or chilled to make it a bit ice cream like., don't know whether that would make it any more palatable for him.
Hubby gets very windy with his ensure, we call it his f*rty drink - he drinks it only for supper now and it is always greated with a sarcastic " Oh..............thanks!!" when I pour it for him. Hubby just downs it quickly, no sipping for him, down the hatch and away - treated like medicine.
Did your hubby get a choice of flavours? They gave Stephen a few different ones to try but he only likes (too strong a word)/tolerates the strawberry.
He was on four a day but now down to only the one, dietician calls him her star pupil due to his weight and muscle gain and fortunately he still has a good appetite.
You and your hubby do not want to end up in the position where he is too thin and has no reserves for that 2nd transplant because they won't be able to risk giving it him without the reserves.
There are more fruit juice type drinks that the milky ones, fortisip is one. Stephen can't have them though because anything fruity or citrus irritates his stomach/oesophagus.
I do so hope you get listed and a proper new liver sometime very, very soon.
Katie & Stephen xxx
p.s. thanks for message re. ultrasound, fingers crossed!!
They have given him ensure 2 cal - but it makes him feel sick and he starts to get what he calls 'nasty burps' so the Dietician suggested he makes it lighter with part milk and part ensure - or do the same with build up - no joy...
On the plus side - he does drink milk and prefers anything bland - yogurts etc.
He has asked for soup today - so let us see what happens...
They are really concerned as he lost 2kg whilst in hospital... Even though he had been eating at least a quarter of his meals. The Dietician has said that if he completely stops eating including ensures etc. then they will take him in and feed through his nose...
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