I am in such pain following this liver transplant. Been home almost a week it’s nearly 3 wks since the operation. No let up in this goddamn awful pain. Plus I can’t sleep not even a wink. And now constipated. Eating dates, guzzling cosmocol , and feeling really really hellish.
When does this ease off? Please tell me it’s tomorrow. Otherwise I’m going to stay in bed and try not to move!
Hi braveheart,.What a wonderful gift of life!! .Great news on your transplant
Unfortunately I'm not pre or post TX , or on any waiting list so i really cannot give you the answers.
Have you not got a direct telephone number to the post transplant team to help ease your mind set ?
Its to be expected with this post op pain , you had major surgery so your not going to be running a Marathon just yet
🙂.. take each day as it comes, I never sleep , I don't even possess a bed any more since I moved and downgraded to a smaller flat due to my chronic pain I could no longer clean the other one I lived in as much nicer as it was .. I had to give up a lot in moving unfortunately. As I say , listen to your own body , that's what I do , hour by hour
I do hope someone can help you on forum more than I can
I’ve tried the transplant line, and my GP left messages. It’s just relentless. I love my sleep. So really out of sorts.
I’m sorry for being so grumpy but I’m not making any headway at all.
It’s good that you have managed to get your GP onto the situation, is there an air call number? There is normally someone on call 24 hours a day by the nature of the procedure.
I am sorry to hear that you are still struggling, and the lack of sleep certainly won’t help.
You must be due at your weekly clinic shortly, perhaps they can check you over there?
Ask the GP for some codeine, it’s definitely not a problem after a transplant. I am currently on a prescription for it and none of the Heptologist’s are concerned about me taking it.
Good luck with everything, the first few weeks certainly are difficult and I hope that you start to feel better soon.
At the clinic tomorrow thank god!
Good to hear 👍
Had my transplant in 2014 I was surprised as I had no pain, I was very weak and had felt like I had gone a few rounds with Tyson but otherwise ok, if no one are getting back to you phone 111 and get seen, ASAP
Hi Braveheart,I'm sorry to hear that you are suffering a lot of pain.
I had a lot of pain after transplant and I was given several types of painkillers by the clinic dealing with my aftercare and this really helped. I had the additional problem that my transplant scar did not properly close and heal until many weeks after transplant.
It's a huge operation and some people heal quicker than others. It's very early days still for you and yes, it really does get easier and easier. It's amazing what a difference one month can make in your recovery.
Tell them everything at clinic and they will prescribe the best meds for your particular problems.
I hope that you are feeling much more comfortable soon.
Very best wishes,
Alf.
No need to ever apologise!! .. I'm really glad to hear you have clinic tomorrow, it will get better.. sending healing (( hugs)) your way
I know it feels like its the last thing you want to do, but getting up and moving about will actually help. Even if its just to get your bowels moving better. Getting that sorted will start bringing some relief at least, which will actually go a long way to also easing some of your other discomfort too. Good job you have z clinic tomorrow. Hopefully they can offer some more relief in addition.
Chin up Braveheart, you have been given a priceless gift, as others have said its a long road stay strong and positive, good things will come recovering from such a big operation im sure takes many weeks, months as others have said. Your here to tell the tale so thats the main thing buddy 👍. Take care and carry on like your namesake. All the best. Ashley
Expect an ultra sound tomorrow, just to make sure plumbing all in tact , I had a similar problem , then was given some fizzy drink to help things along , took a couple of hours and bang , sorted , then my recovery began in earnest ...!!!! Good luck tomorrow .
Ironontheup, good to hear! Roll on the fizzy drink! Just need a bit of relief.
I have another question: did the wound feel jncredibly tight? I’ve never had surgery so have no idea what to expect and if truth be told I never gave after surgery a single thought. Suppose I assumed they just zipped me up!
Hi!💜I am now approaching 4yrs tx. (Feb 3rd)
You are just fine... it’s very hard at first for your body to Aline with your new liver. Please just relax and all will start working. It takes a bit of time for all organs to talk and work together. I was I. Hospital for 14 days after tx. I would say day 11 all functions started to work. Just give your body time and relax - it will start working.
My wound was a upsided down V. I had a lot of inside healing going on for sure - plus the outside staples. I promise just take your time all sounds very normal and you are doing very well
Let me know if you have any questions and I will be happy to answer. Take are.
I have caesarian and hysterectomy scars and yes the wounds felt very tight til they healed. Don't fret my lovely. What your body has gone through is massive and every part of you is learning to adjust. Give it time. But you are right to question anything that causes you concern, you know you will get great advice here from those who have been through the same.
Laura xx
Sorry I wanted to add as well..,, again you doing fine. First of all if you are feeling pain take the meds that you were given and don’t wait until it gets really bad. You feel pain take the med. I promise it will subside. Not sleeping was very common for myself as well - sleep during the day when you can. Up at night read a boring book. This will last a bit so get use to it. BUT IT WILL PASS You just have to get through this. I believe it’s a combination of ALL THE MEDICATIONS you were given during your tx.
Your body just needs time to relax and get to know you and it will balance out. I promise that is what happened for me. Hang in there. 🤞🤞👍
Hi Braveheart65
I’m so pleased you have got your new lease of life when this part is over you can get back to having your life back and start enjoying yourself. I am on the list just waiting to get the operation, everyone I have spoke to has said that we have to go through quite a bit of pain, with the size of the operation it’s got to be expected so I hope you are through the worst of it and it starts to get a bit better good luck 🤞.
Stay Safe All
Dogbot 🐶🌈
Hi Braveheart, I am 6 months post transplant as all have said before hang in there it does get better, just make sure you do not do any lifting for the first couple of months just rest up and I assure you it will get better.
I had weekly appointments with the specialist at your stage, and even now I see them face to face every 4 weeks. Make sure you tell them if you have any side effects and they can manage your medication accordingly. My medication has changed quite a few times since the transplant which is normal particularly in the early stages.
Good luck
Hi Braveheart, Hopefully you can see your consultant at the clinic today and they can help. Take care and keep us posted 
All good. Pain is normal, they are happy so I’ll try to stop loaning! Thx everyone x
Delighted you have had your mind put to rest and hope you manage a good night's sleep tonight without worry.
L xx
Hi - I can tell you that 3 years on, a lot of the pain I felt after the transplant is now just a vague memory. It's like it all happened to someone else. It's probably no comfort to you but even though I was in good shape before the op I wasn't discharged until 6 weeks after. In hospital they told me to take the pain relief that was available and not be a hero for nothing. The constipation was really quite uncomfortable. At home later the opposite was happening - a week on then a week off. The cocktail of tablets I take now have possible side effects of diahoerrea or constipation. You get used to it...better than the alternative. You may have been told that the whole liver transplant process is like a marathon. Not just in the lead up to it but the period afterwards to full recovery where you're back to living your life again. It's worth it.
I was only on transplant list for 4 weeks before I got the call to head to St James. I don’t think I even gave the after surgery a moments thought. My midriff feels so tight and sore. I just hope this will ease really soon.
It’s great to hear that you are doing so well. This whole event has left me a bit confused isn’t the right word more like overwhelmed both emotionally & physically.
I can’t clear my thoughts enough at the minute to consider the donor or their family.
Thankyou for your post, it’s really appreciated.
I have an idea of what you're going through. I had a six month wait (blood group B) but I expected a phone call from the transplant team every night - that's how I coped with the wait. Some people in my ward had been on the list from between 2 weeks and 3 years! The wait ing gives you time to think!
Your body has been through a massive amount of trauma. The anaesthetic can be in your bloodstream for weeks after the operation. You will be in pain (manageable) and very tired for a few months. Your digestion will be all over the place for quite a while. You may be losing lots of weight however much you eat. It will settle down within a year. You may also sleep badly for months - it's all normal. It was close to a year before I felt back to my normal condition.
My donor family heard from me around 6 months after but I understood I might not even get a response. I got a reply over a year later. For the time being try to concentrate on your situation as the donor family will be mourning their loved one for a long time. You'll know when the time is right to message them - it's very personal to you.
Thankyou for taking the time to post a reply, it so relevant to where I am at. 👌
Hi, congratulations on your transplant. I'm glad to hear your Drs have reassured you. I know how you feel, the pain, the meds everything is alot to deal with. I found sleep very difficult initially, I was told the steroids can cause sleep issues, as they were reduced things improved. Whilst in hospital they gave me sleeping tablets. My GP gave me 7 tablets and suggested taking them over the course of a couple of weeks, so not every night. Maybe you could ask your GP, as having sleep is important to healing, and you will definitely feel better if you are not sleep deprived. It also helps with coping with pain, when you're tired everything is harder!!
Most opiate pain killers cause constipation as others have said getting up and about helps. Making sure you drink plenty of water is very important to help the bowel. I have to say I had the opposite problem, I was rushing to the toilet constantly, nothing stayed in my system for long, which made me be mobile, but wasn't much fun either!!
You are very early on in your journey, everyone is different, we all experience pain differently, just go at your own pace, you are not in a race with anybody. Healing physically and mentally takes time.
Very best wishes
Wass x
Thankyou for reply.
Mercifully the laxative prescribed this morning by my GP has worked already. The headache is still there and let’s not talk about the pain but I’m trying to convince myself that the paracetamol is extra strength super duper (not quite believing myself as yet).
Moving is ok once I’m on my feet, it’s the getting up from sitting or lying down that’s sore.
But tomorrow is another day and hopefully it bring something positive.
May you have long continued health!
I know what you mean about moving. I was shocked at how off balance I was, I would struggle with the pain getting up ( trying not to use abdo muscles ishard). Once I was up it was obvious the core muscles are important for everything to do with movement.
3 or 4 weeks post TP I had a week of being in the worse pain ever, I couldn't move at all. I cried every time I tried to get up out of bed. I had to lie completely still, moving at all was agony. My Drs said as long as I didn't have a fever it was ok. Then the infection started to break through to the scar. I had one night of fever, 2 days later my GP saw the wound and called the consultant, I went for a scan and the consultant was called into the room, and a surgeon ( this was during the first lockdown, so all the Drs were there, not doing surgeriess etc). I had a massive infection under the wound, which needed draining. So I ended up in hospital with 2 drains in my wound and then 6 weeks of antibiotics (one week iv in hospital, the rest oral).
The reason for my story is, listen to your body, pain is normal after surgery, but if it's worse, or not improving every day, dont try and be brave, make sure you tell your Drs. I put up with it for too long, didn't complain enough, and suffered the consequences!!
Wishing you a well, thinking of you.
Wass.
Thanks for the reply. I hope this is post surgery pain. And my headache is lack of sleep/constipation. The wound was inspected yesterday and he seemed happy. My ribs hurt and coughing or clearing my throat is sore crime against humanity. Please hold let me start to improve. I felt better last week. And did better in hospital. No temp although not measured it but don’t feel warm to touch.
For first time I can remember I couldn’t care if I showered, washed or my hair was sitting as it was cut. I give in.
I appreciate you taking time to reply.
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