Awake again: Hi all Just read posts... - British Liver Trust

British Liver Trust
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Awake again

1football
1football

Hi all

Just read posts regarding giving advice now not sure whether to ask for advice😳

Am know just over 7months post TX and in general doing pretty well BUT do any of you who have had this massive op still suffer with the following

Severe abdomen pain(still can’t sit up without pulling myself up,have to hold stomach when coughing etc)

Headaches

Bloating

I do realise healing takes a long time but beginning to think is this the best am ever going to feel

Am also extremely thankful to my donor and medical team for being alive and having a future am not unaware of this just looking for people who have had similar experiences

Huw

12 Replies
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Hi Huw

My transplant was a long time ago but I had major operation on tummy 5 years ago and can remember it taking about 18 months for the abdominal pain and having to hold myself across the middle whilst coughing sneezing etc to go away. In my own experience of transplant things do get better and I had 15 years of feeling completely normal and know of others who have had a lot longer. Hope this gives you some answers

Julia

1football
1football
in reply to Smyally

Hi Julia

Thankyou it helps knowing that what am experiencing can happen it’s worrying me having to take cabapentin and paracetamol so regularly to ease the pain

Huw

Smyally
Smyally
in reply to 1football

It may be worth mentioning to the transplant co-ordinators or next time you’re in clinic if the pain is bad enough to take pain killers. Just to put your mind at rest. How much pain killer we can take varies from patient to patient depending on the original cause of our liver disease. They may also be able to advise you if there are any exercises you can do to strengthen the muscle in your a abdomen. Take care

Julia

Hi Huw. After Addenbrookes transplant last August bank hol. I was put on paracetamol , gabapentin, meptid and oramorph and because of my falls and spinal breaks I am still on those meds. So I have had them right through from transplant. I am now coping on taking them every 12 hours because I too am worrying about the affect on my liver and kidneys. I'm working out now how to cut down even more, because I can't cope entirely without yet. So I'm going to start leaving a tablet out each time but it's difficult to know which. I know don't know if gabapentin is really helping much or not, same as meptid. So it's a question of trial and error. The sooner I can get of all of them the better.I too struggle to sit up from a lying position and difficult getting up from a chair but don't know how much is due to op or to spinal probs. My Robocop jacket doesn't help but I know that it's totally necessary ! Hope your pain eases soon. Alf

I have spoke to clinic my last appt 3weeks ago. I think your also at addenbrookes if my memory is correct hence the gabapentin but doesn’t seem to help will talk to coordinators next week regards possible excercise but I do a lot of walking even hills

Huw

Smyally
Smyally
in reply to 1football

Yeah I’m at Addenbrookes too. Going 8th January. Always find whoever I see very good and compassionate. I don’t know what else to suggest but hope it gets better for you soon.

Coralsun
Coralsun
in reply to 1football

Hi Huw. I haven't had a transplant and I know this is completely different but I had long term issues after a c section. After the initial pain and swelling had subsided I used to get cramps in that area. It would happen on certain movements and when I coughed. It lasted for years but luckily not too painful. I put it down to to my muscles having been cut through and possibly internal scarring. I'm sure you don't need me to tell you that you have had a substantial surgery and healing takes time. But with severe pain I would definitely be checking in with the doc's with it to make sure there isn't any underlying cause. I hope you feel more comfortable soon.

Coralsun

Hi Huw, I posted a message very similar to this at 7 months post. I couldn’t stand from a sitting position without support for a long time then one day without me even realising I just did it, now I don’t even think about it. I think it just takes time physically, i’m still finding my feet now and i’m 3 months ahead of you. I went through a phase of being exhausted not so long ago, my team told me to just rest and I did and it worked. I know what you mean about coughing though I have to hold on and you certainly know all about it when you first sneeze after transplant 😂.

All the best

Will

No severe pain but some pain when lifting, shopping bags for example. I wore a corset for a time.

Hi Huw..I've had 3 liver surgeries (no transplant) 2 done by Paul.

I do still get some abdominal pain even though it's 5 years since my last surgery.

It does get better with time and for the most part I'm almost back to normal.

It's only been 7 months since your surgery so it's still fairly early days.

Hi Huw,

I think no one on this site should be afraid to ask questions or advice of the others on here.

I'd let your doctor know what is going on and see what he/she says.

I think you got some excellent information from others here.

Best wishes and a Happy New Year,

Mary

Hi Huw,

I think it took me a good 9 - 12 months to be pain free. I do though expect that could be very variable between people. I still get a bit of pain from where I had my appendix out 6 years ago. In fact I probably get more pain from that than I do from my transplant, lol.

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