Care After Transplant

[Cat1218]

Hi, can anyone tell me what kind of care was needed when returning home from a transplant, and was this needed for a while.

[Huggy7614]

Morning. A sympathetic partner and kids is handy!! First few days out of hosp are a bit weird, ypu literally can’t do a thing other than walk around slowly. But what your capable of improves rapidly.

You’ll be going back to the hosp for clinic frequently in the first few weeks and they will keep an eye on your wound needs if any. You shouldn’t need any other help but bear in mind the heaviest item you can lift is a cup of coffee!!

So you may need someone to help with cooking etc. don’t even think of doing the hoovering!!

Good luck. Andy

[Cat1218 in reply to Huggy7614]

Thank you for replying, I appreciate your sound advice and feel better about it. I have my assessment a week today, I have been sent a schedule of all of the tests, having it done in one day from 8am to around 5pm. Nervous!

[Shep666]

Andy is right about the support. Fine balance between being as active as possible but being sensible. They are very keen you are as mobile as possible to help avoid infection but lifting anything is a huge no no. So pretty much limited to staggering from one resting place to the next in the early days 😜 That soon improved for me, but everyone is different so go at your own pace. I used a static frame to get off and on the loo in the early days – that really helped me and made me feel more independent and helped recover some of my dignity that I had happily cast aside in hospital.

Lots of hospital visits (but in a good way) to assess progress and change meds (a lot). I felt very well monitored and looked after.

The best bit is getting home 👍😍

[Cat1218 in reply to Shep666]

Thank you, that is really helpful. Keeping optimistic and hope to be listed after assessment next week.

[Shep666]

Good luck on the assessment, don't worry too much on that, they do want what is best for you so they do not set out to fail you. Maybe they could suggest other outcomes at that point 👍

either way it is a long process so baby steps 🙂

[taar]

In addition to what others said, I had to have help for about a month or two to set up my meds, as I would have easily got in a muddle. I had one of those dosette boxes, and took, I think, about 10 tablets a day, and things like, one one hour before you eat, these three with breakfast etc, and timing being an issue with some of them. I can manage now, but at first really needed my husband to set it all up for me. Physically, not too bad, but had trouble sleeping, not much appetite, but still had to eat of course.... And can't drive for two months. Good luck

[Cat1218 in reply to taar]

Thank you for your helpful reply, already have multiple dosette boxes so I can understand why it would be helpful for someone to be supported with that. I know that I am thinking ahead but it feels better to hear from people who have experienced all of this and I am trying to get as much advice as possible, thank you to everyone for their replies and advice.

[taar in reply to Cat1218]

I absolutely agree, thinking ahead and hearing from others helps me to understand also.

[Yellowsydney]

Hi, I'm 6 years post liver transplant, when I first came home from Addenbrookes after my transplant my husband went to work the next day and I was in my own, I managed ok. You will need someone to drive you to appointments, which will be weekly for a while as you are not allowed to drive for 3 months. Everyone is different in their recovery, some are bedridden, some are up and about from day one, you will not be allowed out of hospital until you are mobile and can manage stairs. I was in for 2 weeks after transplant, which is about average.Good luck with your assessment, take a notebook with questions you want to ask and note down anything you are told, it's hectic time, lots of tests, buckets of blood- not literally, lung function, ct scan, x ray, ecg, ultrasound of heart, lots of talking.

If you use Facebook please feel free to join our friendly and knowledgeable Facebook group called liver transplant support uk, thousands of people that have been in your situation.

Hilary ❤

[Cat1218 in reply to Yellowsydney]

Already armed with notebook and still adding questions and info to it, thanks for replying, it's a huge help hearing from others.

[PeterP54]

Had my TX in 2006. Hospital and post op care may have changed in the interim. Pretty much as others have said. I think I was kept in hospital a few days longer than most and recall that when allowed out of bed, I was totally exhausted by walking 10 yards . At home, the District Nurse was coming to dress the wound for a while. I just sat around and tried to walk when I felt able. You will know when you have taken enough exercise. Good luck.