Change in body shape post transplant

[taar]

I am now 10m post transplant, and all going well. Not perfect, but well.

I find my body shape has changed a lot, I am much more bulky in my upper abdomen, above my navel to chest. I expected some swelling while my body got to terms with the new liver, but even after this time, I just seem so BIG, clothes not fitting, mildly uncomfortable. It is not as if I am eating a large amount, I eat as instructed, but not to excess as I don't have much appetite still. Can anyone shed any light, or pass on any advice?

Thanks,

[Treble2023]

Have you asked about Acites? Ask for your GP to check your tummy for excss fluid.

[taar in reply to Treble2023]

Good point, will look into it.

[Yellowsydney]

Hi, you are still very early out of transplant, it generally takes a year to recover from transplant surgery. For the first year or so it felt as if I had a block of wood where my liver should be, made bending, moving difficult. My 'new ' liver was bigger than my old one and had to settle into my body. Mention it at your next clinic visit or contact your coordinators, they won't think it's a silly question.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 💚

[taar in reply to Yellowsydney]

This is very helpful, thank you. (Sorry, I don't use facebook!)

[bagpuss7]

I am just over a year post. I feel the same too. I guess the surgical cut is large and and part of my body is ( and the docs say) and always will be numb in places. It is a huge Op.I imagine there is lots of scar tissue I cannot see underneath. The new liver is also large. So everything may never feel normal again. I do feel uncomfortable and blobby in my upper torso. It's not ascites . I have had scans for other things. I guess the new organ is just inevitably not an exact fit and there is unseen damage and scarring.

[taar in reply to bagpuss7]

Thanks for taking the time to reply. It helps to know others can/are having the same issues. I am not having numbness, and was expecting swelling/inflamation from the "shock" of the operation, but I thought it would settle, but as you say, perhaps not. I hope you are well otherwise? Good luck to you, and again, thanks for your helpful reply.

[bagpuss7 in reply to taar]

I wonder if the numbness is unusual then. I was told they have to cut so deep they caused irreparable nerve damage in patches. I assumed everyone was the same. Maybe not? I am OK, as you asked. 🙂 Still glad to be alive I guess! 2 bile duct procedures and loads of meds tweaks. I had the loss of hair and pretty exhausted often. However supremely grateful for this second life. Hope you are bearing up.

[taar in reply to bagpuss7]

Like yourself, I have had lots of meds changes. The op messed with my diabetes and bloodpressure. Fortunately, didn't suffer with much pain. I did pick up CMV Cytomegalovirus from the new liver, which, after about 3m post op made itself known, making me feel weak. They have a treatment for that, Valganciclovir, and though better, still not on top form, but hopefully getting there. Like yourself also, very grateful for the organ donation and brilliant medical care, but it isn't easy is it? Good luck to you. X

[Stizzer]

I'm nearly 7 years post transplant and developed a very large incicional hernia that is still present today. Surgery is not an option due to very high intra abdominal pressure. It's very painful and uncomfortable but I'm still alive. Ask you Consultant to check regarding a hernia. It may be as simple as that. Take care and keep taking the Tacrolimus. Stay safe.

[taar in reply to Stizzer]

Thanks for the reply, Stizzer. I have just come out- Monday evening, after a ten day stint in hospital. It appears to be an issue with "kidney injury" that they are still investigating, blood tests, ultra sound scans and xrays.

I said to the kidney specialist, I was only in for 8 days post liver transplant, and I have been here for 10 days...he said, Recovering from the liver transplant is one, thing, trying to ensure you keep the transplant might take longer. Ooer!

It is intended I have kidney biopsy in a week or two, when they can fit me in, and have to go for another blood test tomorrow, and if they don't like what they see, I will have to stay in again...But, they are looking out for me, and doing everything they can for me, so I appreciate that.

I hope you are coping and still getting to enjoy life. Stay safe, and keep fighting the good fight. Bless you.