2 weeks today.....im daring to hope about our future each day that passes now. Husband was discharged on Sunday night after a very hectic 2 weeks - feels like we went through 5 years of rollercoasters all crammed into 2 weeks.
We had a terrifying ordeal with Delirium - looking back now i think it was there since early days - but i thought his behaviour was just because he was feeling vulnerable and scared. He suddenly started acting a lot more erratic thru the day Monday, and ended up full blown, completely out of it through the night and next day. They ordered an emergency CT scan etc and called for me to go into the ward eventually. It did calm him down a lot I was able to ground him in many ways, with the little things i know he likes to listen too, back rubs etc etc. We held hands ALL day and night. They put a camp bed down in a side room and put us both together - i stayed there until Friday. He was only on paracetamols by this stage, so they think it must have been some of the other drugs.
After this, the only thing that has been quite problematic has been his blood sugars. Theyre still soaring in the 20's despite being on gliclazine. They eventually let him home if we monitor them - and have decided in clinic today that it might be best to go back on insulin (was on it on drip until prep for discharge) so that he can concentrate on eating better to regain strength. He wasnt a diabetic prior to transplant, so its likely just his meds causing it - although theres a lot of diebetes in his family - so it may have just been triggered by the surgery.
Today he also had 40 staples removed from his wound which were quite excited about. Hopefully the final 40 next week!!
Thanks for all the support - its so useful speaking with others. Im also trying to make my posts realistic and informative for those awaiting surgery - as when i was at that stage, reading this type of post prepared me so much!!
Ewife xx
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Ewife
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Hi Ewife ,thank you for taking up your precious time to update us on hubby .You've been through so so very much haven't you ,glad to see you were able to get hubby out to clinic today , this is a positive move don't you think 😊? ..
Things will be up n down now until things like blood sugars stabilise, maybe it will go away eventually 🤔..
Your doing a fantastic job Ewife , hats off to you as I know how hard it is emotionally to give support and yet to try and remain positive yourself
I hope things continue well on hubby's Road to recovery
I'm sure others on here with transplant experience will help curb any doubts you may have
Thank you! Yes I do feel optimistic - first time in a very long while. Even though we have these challenges along the way-the big picture is still positive and encouraging!! It feels like were nearly on the home straight.....🧗♂️
Hi, it is fairly normal post transplant to become diabetic, usually caused by steroids, tacrolimus can also cause high blood sugars. Pre transplant I was diagnosed diabetic but was diet controlled and I never bothered about it. I was on insulin for the 2 weeks I was in hospital but went home on Gliclazide, had to see an out of hours doctor a couple times due to sugars being over 20. Hopefully as his dose of steroids and tacrolimus are reduced his sugar levels should come down and settle. 7 years post transplant I'm still diabetic but have it under control, taking gliclazide.Here's to an uncomplicated recovery from now on, it generally takes a year to recover from transplant surgery don't try to rush recovery or he could run into problems.
Thank you - thats interesting. We are still trying to work out how high we should let his blood sugar levels go before calling emergency. On Sunday night we had a reading of 28.1! Transplant team are trying to get us a diebetic nurse sorted but think this will have to come from GP hence the delay
I was told to seek medical help if my levels went above 20, had to phone 111 doctor just checked me over and said you're fine. I've never seen a diabetic nurse, despite my transplant Consultant wanting me to, district diabetic nurse sames my medical history is too complicated and hospital says my hb1ac isn't high enough for them to see me.Think I've said before but if you use Facebook please feel free to join our friendly and knowledgeable group called liver transplant support uk, thousands of people that have been in your situation
Hopefully this will get ironed out by TP team soon, but just a bit worrying while we wait. Generally feeling amongst nurses/dietician is that he needs insulin for now, but so far, all drs have done is increase the glic
It gets complicated when there's different specialists involved. I used to see a dietitian at transplant clinic, was just told to eat as I'd lost a lot of weight immediately after transplant. Its very difficult to get the balance right, he needs to eat plenty to help with healing but also needs to keep sugars in range, eat lots of protein, fruit and veg. Also need to drink lots of fluid to flush Tacrolimus through his system or the tac will damage his kidneys. I really hope he gets sorted soon, over time as his drug doses are lowered hopefully his blood sugars will settle, this is just a short term blip in his recovery. Hilary xx
Theyve just rung with his bloods from clinic. Theyre tweaking things round a bit as his kidneys arent very happy either but nothing alarming. Lowering the pred, and tac and increasing the other one. Shes also told us to ring 111 if his sugars ever reach 30 and has rung our GP for us and managed to get appointment for Dr to ring today! Fantastic team - hats off to them.His white cell count is also v slightly raised so just got to be vigilent.
Ive seen various people on here talking about these constant tweaks - so i know its all v common.🙃
It is very common, every time he goes to clinic and has bloods they will access his medication until everything is stable which could take months, the aim is to stop steroids and be on the lowest maintenance dose of anti rejection drugs as they are fairly toxic, lots of fluids will keep his kidneys happy, mine were badly damaged within weeks of my transplant, 7 years post I have 40% kidney function but doctors are happy as they are stable and it doesn't effect me. I only take 0.5mg Tacrolimus twice daily, one of the lowest doses there is but have to take Mycopenolate to keep the immunosuppression high, its a big juggling act, trust in his doctors they've seen it all before. If you have any concerns talk to his coordinators they are all brilliant. Hilary xx
That's a bit mad at Edinburgh the transplant team and diabetic team seem to work quite closely together.
Hubby was diagnosed as diabetic just before assessment and metformin hadn't worked for his so during assessment diabetic nurses became involved and got him on insulin which we are still working with as his supplements are causing very high blood sugars/as did the nasogatric feed. I can phone them between 9 and 5 each week day and they ring me back and I pass readings and they give me instructions for tweaking insulin doses.
They haven't passed hubbies diabetic care to our local health board yet and it's all being masterminded by Edinburgh. When we go to t/p clinic we also pop into diabetic clinic and they catch up with us then too and we arn't the only ones.
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