A question, and I know that everyone is different.
How long does the pain, tightness and general uncomfortable feelings last after having a transplant?
I know I’ve added to my malaise by developing an infection where my gallbladder used to be (removed during the transplant) but the pain is still bad. Is this normal?
Hi Braveheart,
I would get the odd sharp pain every now and then, or feeling of discomfort, possibly for a month or two after. Initially a little unnerving, but I was reassured it’s just the body healing. Although you have the staples out 3 weeks after, there’s still a lot going on inside.
Just make sure you avoid doing anything. Don’t lift, don’t push the vacuum!! Just bide your time. The pains go, things get into a routine, and eventually you even forget you have a scar.
It’s good to check there’s no redness around the scar or acute pain to touch, but yes the grumblings inside go on for a while.
I promise you it does get easier, and life gets back to a near normal. Promise!!
Andy.
Everything Andy said and don’t lift anything, trust me to my cost
I had staples out at day 16, this 4th week post transplant. I’ve picked up an infection and on antibiotics but the pain is worse than when I first got out of hospital and backache has started.
I did try to do some things this week, I hoovered and mopped the kitchen floor-never ever again.
There is no swelling or redness round the surgery (which I don’t like to look at and refuse to touch).
I’m losing weight as my appetite is non existent, basically just nibbling to be able to take the meds. I was approx 49kg pre transplant and now 44kg-my fighting weight is about 60kg. I look like a saggy bag of bones. My backside is sore from sitting on my tail bone.
In short, I’m miserable!
I read somewhere that this surgery might not even be the sorest that you can have as in doing the transplant they cut thru nerves which take longer to repair than the surgery. So you don’t feel as much pain!
I’m wandering about to keep moving.
Whole experience is tough going.
Feeling of tightness, does it go away?
If you think about it they’ve just cut through all your stomach muscles, and somehow they’ve all got to get back together. They do, I can vouch for that, but that’s why it hurts to sit up or swivel round, and why you MUST NOT Hoover, wash floors or lift more than a fork or coffee cup!! 😜
The fact you have an infection will be giving you more localised pain in an area already beaten up, and I feel for you with that one. 4 weeks is NOTHING!! You must take it easy. After a while I found I could drag the hoover behind me but could not push it. If you do it you will put your recovery back.
I know how frustrating it is, it’s so alien to have to sit there and do nothing, but if you don’t then you’ll be in pain for a lot longer. Sorry.
You must still be under the dietician. It sounds like it may be worth a call to them to discuss food options, or protein drinks. I found my dieticians really helpful.
It does get easier. You will be able to look at the scar, I was terrified to get it wet in the beginning, but shortly after I could trace a finger over it, and now I don’t think about it being there.......haven’t been to the beach yet......
It is a hard slog, but you’ve got a good support network around you.....us!!
Andy.
Hi Braveheart,Whatever were you doing hoovering and mopping? 
I was told not to hoover for six months, which was a bit of a joke between the wife and I as I never hoover. I was also told don't lift anything heavier than a kettle for 3 months.
You can give yourself a hernia doing hoovering and mopping. Your muscles that have been cut right through have to heal inside and out.
You should rest and take it easy for the first few months. The tightness feeling can take some time to go, even a small wound can feel tight when it's healing.
I had to take Gabapentin for nerve pain, it isn't true that you won't feel as much pain because the nerves have been cut through.
It's a huge operation that you've had and healing will take it's time!
Small walks are enough exercise for now.
Feet up in between!
Best wishes.
Alf
It takes a while unfortunately Braveheart. For me I'd say about 2 - 3 months for most of the initial effects to wear off. But, there was still some discomfort even then.
If there are some complications, as in your case, then its not surprising you still feel as you do. Pain and discomfort is probably to be expected for about 2 - 3 months but whilst a bit of weight loss and lack of appetite is to be expected for a short period afterwards for me that wasn't that long. I was eating ok, pretty quickly. Within a couple of weeks I'd say. However, having an infection probably isn't helping with that and what you describe to me needs keeping a very close eye on. Hopefully as your infection subsides, that will ease too.
Please do though make sure your transplant team know how you are feeling. It is absolutely fine to ring up the coordinators at any time to raise your concerns and ask them for advice. Indeed, even though you've not long since you gad your last clinic, i would suggest that you give them a ring even if its just for some reassurance. They won't mind at all and will be able to bring you back in if they feel its necessary.
Thank you Kristian and Alfred the Great.
I didn’t sleep much last night so lots of thinking time. I decided to try to be me again, that is I’m fairly pragmatic and practical therefore I need to be positive: this won’t last forever I just need to find stability in the short term and that won’t happen until this infection is on the mend.
I’m booked in for an aspiration procedure to remove the infection on Friday and I’m back at the clinic tomorrow. Let’s just see if I can get through today a bit more positively.
I can’t thank you all enough for the replies, guidance, help and kindness. I just hope I can do the same for others when I feel better.
Peace & good health
Alicia
No worries Alicia, I'm just sorry things haven't been so straight forward for you and hope you start feeling the benefits of your transplant soon.
There's no reliable timeframe for how long it can take unfortunately and in some it can take longer than others. I just hope you start feeling at least a little better soon.
Also never worry about raising any little issues at all with your transplant team. They are always keen to know these things so if anything is a miss they can pick it up early.
Good luck again 🤞
Hi Braveheart, I agree with all the good feedback you have been given. I am 7 months post transplant and today I am starting the journey of going back to work (from home). I am both excited and nervous but for me this is the next chapter in my journey of getting back to some sort of normality.
I have been where you are at the moment and come through the other side, so my message is the same as the others hang in there and you will see the benefit of the life saving transplant you have had.
Good Luck 😉
Enjoy your work! Great news, I’m very happy for you.
Hi just remember u have had major surgery and it takes time 4 ur body to adjust. It's only been a short time 4 u. Please just follow advice u have been given and no heavy lifting. I lost weight b4 transplant and my body was saggy it has firmed up a bit now. I became diabetic after transplant and take a tablet to control it now as oppose 2 insulin which I was on at the beginning. My weight seems 2 stay the same now. Also my hair was falling out and became quite thin but now it's alot thicker. I was prescribed folic acid. It will take time 2 fully recover and I think most of us still get slight twinges now and then. Remember baby steps. Take care
Hi Braveheart, I’m 3 months post transplant and improving every day but still limited in what I can do. The pain and aches in my stomach are much better. I do have severe back ache but that is due to a fractured vertebrae as a result of osteoporosis. I am having physiotherapy for that which is helping. I was 54kg pre transplant and when I left hospital, was 42 kg. I am now 49kg. Like you, it was uncomfortable to sit and I too looked like a bag of bones. My husband said that when I first came home, I reminded him of Karen Carpenter. I tell you this to help you see that what you are experiencing is normal. As for the scar, I was extremely scared to look at it but having taken the plunge, I was extremely happy with what I saw. Very neat. I was recommended to get some silicon gel to help with the healing process of the scar and I can highly recommend. I was unable to get on prescription but it was well worth the investment. I wish you well. Samantha
Thanks for that-very reassuring.
Thanks for reply, I’ve now ordered silicon gel for healing scars. I’ll give it a go.
My experience may not help as we're all in different states of health immediately prior to transplant (2013) which will affect speed of recovery. I don't recall much pain besides my expected post operative healing pain which resolved after a few weeks. I had previously had my gall bladder out (1990/91) and that I do recall as painful when trying to sit up in bed immediately post operation. I'm pretty sure that my post transplant pain was no worse.
The most unexpected issue was the level of sheer exhaustion when trying to walk once I was allowed out of bed. Just walking 10 yards to the end of the ward left me needing to sit down for 15 minutes to recover. Slowly but surely my stamina returned however.
The worst part of recovery was the morning round of blood tests. There was one phlebotomist who was particularly brutal and I dreaded her coming to my bed. The others were all fine.
Thankyou. The screaming pain in suffering must be this infection.
Hi Braveheart65,I had my transplant almost 4 yrs ago (feb3)
I’m from Canada. I love this site!
First of all I want to say how well you are doing.... healing sometimes is pain. I would feel pain after my surgery - I believe it’s the inside healing. Just as other members have said - during surgery all of your organs are being touched, moved etc. That certainly can effect how you feel. Please understand the severity of the operation that you have gone through. Also, you have encountered an infection - more time to heal. Your body and mind need time to heal. This will not happen over night. It takes time. You need to let go and heal. I do believe all of the meds that were put in your body during transplant stay in your body a long time and need time to withdrawal from your system. Promise. 😊 Everyday will be different. Start to notice the positive little changes.
Before my transplant I was bed ridden, put on a feeding tube & kidneys stoped functioning before my transplant. They put me on dialysis and my kidneys came back and then I had my transplant. I had to learn to eat again, walk again and to LIVE AGAIN!!!
My message is to be patient with your healing.
However, if you are in pain please call your transplant coordinator and address this pain. Explain where it is, how often AND ESPECIALLY HOW IS YOUR SLEEP. Your sleep is very important!
If you have any questions or concerns please let me know and I will be very happy to tell you my experience. I wish you the BEST recovery my friend! I / we are all hear for you!! Be well 💜
Thank you for taking the time to post, I wish you continued good health.
I’m back in hospital, when they aspirated area where my gallbladder was to remove the fluid, it was painful. My temp was fluctuating and they kept me in. Anti biotic drips, morphine, and laxatives! What a combination.
I hope to get home today as I definitely feel a bit better than yesterday.
Before transplant I was only in waiting list 4 wks, they told me I needed to keep my strength up so I was still using cross trainer for 45 mins a day albeit at walking pace. So whole experience has just overwhelmed me.
Liver Transplant Assessment appointment
Fatige post liver transplant
After liver transplant
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