post liver op.

[alfredthegreat]

I am nearly 5 weeks post op liver transplant and I wondered how long the initial pain goes on from the operation incision? I am still having to take quite strong pain killers at regular intervals and I wanted to know if this is quite normal? Other than that I am feeling fine, a bit tired but a lot of that could be down to the pain killers.

[jojokarak]

I personally was taking oramorph for about 2-4 weeks, I weened myself down and the last week or so I just had at night time ... You will be tired for a while at moment your body been through a traumatic experience just go with what your body is saying and don't feel guilty 😊 and congratulations on your transplant .... And if it's still concerning you the pain your experiencing just mention it at your appointment which I am sure will be next week x

[alfredthegreat in reply to jojokarak]

Thank you for that. I am using less of the liquid morph now but still taking a pill for nerve pain and 2 other pain killers. I'm in less pain now than a week ago but it's good to hear anothers experience as I have no yard stick to go by. Was at clinic a few days ago and they all seemed to be ok with my progress. No clinics now for a month , just a blood test each week at my local hospital, so I will be able to rest up properly. It's not much fun drugging yourself up just to survive the pain of the journey although I do understand how important it is to attend the clinics. At the moment my bed is the most comfortable place on earth. x

[Hidden in reply to alfredthegreat]

Hi again exactly same re weekly checks. Have to me and wife drag ourselves on train to QEHB every Monday. Effectively whole day gone but its has to be worth it 😀. They did say i might be able to go alternate weeks to royal derby soon - yippe only 20 mins away.

[Hidden in reply to jojokarak]

Hi

I agree jojo but at my clinics 3 now, weekly post tp, none of the consultants, 3 diffent ones in 3 weeks, asks me how i feel and hardly look at me let alone ask me any questions - it seems its just the blood test results that matter!

Im not really criticising but, because i feel somewhat rushed, I forget to say what i wanted to.

Anyone else with similar experiences?

Miles

[Hidden in reply to Hidden]

Write down any questions, that way you don't forget. Works for me everytime 👍

[Hidden in reply to Hidden]

True! Hut i forget to think of that until im in the waitin area. I MUST do better 🤭

[1football]

Hi

You will be sore around your scar for some time and the pain relief given is good but I found it made me unsteady on my feet and gave me a foggy head so I stopped taking them and stuck with paracetamol,it’s hard but the more you move around really helps I started counting my steps and set small goals like 500 a day then slowly increased I reached 10,000 within a month but I say again it was hard am know back at work on light duties my op was on 20th June when traveling to appts I found putting a pillow around my stomach under seatbelt helped

All the best

Huw

[Hidden in reply to 1football]

Footbaa - i am full of admiration! That’s fantastic and spurs me on..

My tx was nearly 5 weeks ago. I am extremely wobbily on feet and cannot walk in dark unless hanging on to something!

I managed about 200 m with 3 sitdowns. I will set targets (good idea) when i feel a bit better 🤣

[1football in reply to Hidden]

I certainly remember 5 weeks 😳my head was all over the place I found the steroid pred the worse it sort of gives the Tacrolimus a boost and made me feel very odd but it does ease as they lower your dose and of course time as your body adjusts.

Those steps your doing are really good and you will gradually increase those for sure wishing you the very best on your journey

Huw

[Hidden in reply to 1football]

Thanks foters. What on earth is tachrimolus? Is that another name for the immusuppresants, PRO something?

[1football in reply to Hidden]

Tacrolimus is prograf/adoport (immunosuppressant

)

[Hidden in reply to 1football]

Ahh great. I have that. 6mg

[alfredthegreat in reply to 1football]

Hi, Yes, I've been using a pillow under seat belt and sitting on top of my daughter-in-laws huge U shaped pregnancy pillow. Had to do this as when going to clinic (best part of 2 hour journey) with still open wounds I felt every single pothole! Reminds me of the story of the princess and the pea, lol. I'm beginning to feel better now with reduced pain and increased appetite so that has to be a good step forward. The difference a day makes!! WOW!!

[Hidden in reply to alfredthegreat]

I dont know that story? Unless ive forgotten it hahaha

[Hidden]

Hi Alfred

Im EXACTLY feeing like you from what you describe. I too had my transplant 5 weeks ago this coming Monfay at QEHB. Fantastic care! I was in really really bad pain for 2 weeks, then 2 weeks just really bad pain and now more localised pain in top centre and also where the drain bag was fitted (it took 4 weeks to they wouold take bag off but its still marginal if its healing).

My wife and daughter try and stop me having Codene “because its addictive “, but i keep saying ill swap with them and then see if they could cope!)

So i have about 6 paracetamol a day (soluble provided by QEHB) but GP wont repeat soluble because of Blood Pressure effects so im going on to bog standard paracetamol tablets). My glood pressure us generally 195/75. Yoiks!

Then now about 3 codine a day (dose is allowed 4 a day).

Sleep - what is that? Aaaaggght. About 2 and a half hours but I managed once 3 and a half hours - obviusly a bit more just after op, but now i mostly don’t remember anything first couple of weeks.

Lethargy and sozing off and hallucinations any time from about lunchtime until next day.

So i’m not a lot of help, sorry, except to commiserate, and wish you best of luck!

[alfredthegreat in reply to Hidden]

Hi Twosmiles. Today was a much better day. I still have a small bleed from wound but hope this will stop in next few days. Had 2 drains in and those parts have healed now. Had huge bruise from haematoma but this now has gone from black to yellow. I'm trying from today to reduce pain relief little by little. Using a hottie bottle for my backache (always worse when sitting up). I slept better last night, just woke up when pain killers were due. No need to set an alarm ! My bp seems to be on the high side also. Will sort that with gp next week. Had strange dreams like you only one hallucination though. I woke up one morning and thought I'd gone over to the other side, was so pleased to find out I was still here!! I hope your pain recedes really soon and you can then move forward. Nothing like pain for stopping you doing that. I feel today that I have taken a step forward. It's amazing what a difference 24 hours can make. I've also had a real appetite today, actually requesting extra food on top of the healthy meals my wife pushes at me! lol. All the very best to you and a speedy recovery.

[Hidden in reply to alfredthegreat]

That is so interesting, Alfred. I find it really interesting that so many people have same issues. When you hear that it calms you down, so you can chill a bit!

Re 24 hours i, in general agree, but yesterday i was feeing so good yet today i ve been a right rat bag, if i said i was annoying my wife, i think it would be an understatement!!

Anyway hope you continue onwards and upwards (some pratts at work used to say)...

[alfredthegreat in reply to Hidden]

After such a good day yesterday I decided to go with my wife to a shop just 4 miles away. She was popping there to get a birthday present for a relative. Well we arrived there and I got out of the car (or should I say my wife prized me out of it) straight away I was absolutely shattered. So back in the car. The wife nipped in and got the present and we came home. I've lost a lot of muscle over the last 4 years. Was diagnosed with HCC and went on a trial called TACE2 (2 procedures of TACE along with a drug called sonaferib.) It all knocked the stuffing out of me.The trial ended suddenly last year and a few months later I entered liver failure. Then the transplant that was never an option before was offered to me if I reached all the criteria.So I tend to forget how weak I really am now and I realise it's all going to take a lot of time to recover from it all and I'm trying to run before I walk. Just glad to be here and will do little steps at a time from now on!

[Kate50 in reply to alfredthegreat]

Hi, I think you are starting to understand that not only do you have to recover from such a major operation but also the years when you were struggling along with a poorly liver, you have to be kind to yourself and not overdo things , take care of yourself 🌸🌸

[Hidden in reply to alfredthegreat]

Hi yes youve defintely (but i dont know anything as admins keep warning us) wasted away quite a lot as katie says. I only had about 10 months immobile, so im hoping it will all come rushing back. I walked about 3/4 this morning in lane/field with no stops - dog loved it, havent been able to take her for a walk for 10 months. I was told by the hospital i couldnt have her on a leaad - so she was free as a bird chasing a rabbit and quite a few pheasants 😀

[alfredthegreat in reply to Hidden]

Hi Twosmiles, Not a good day today. A lot of pain at operation site and blood in the dressings again.District nurse comes tomorrow to change dressings, I just hope that there's nothing nasty going on. I felt so good a couple of days ago. Oh what a bummer!!! Expect I'll get there eventually. Hope you're doing good today and got another walk in with your dog.

[Hidden in reply to alfredthegreat]

Hi alfred.

Man, sorry to hear that, did it just happen, no doctors or anything? I hate it when things “just happen”. Sure you weren’t hoovering? They kept telling me i couldnt hoover (honestly!) for 6 months. My daughter said that she hoped i told them that was the norm!! (All lies 😑😑)

Hope it goes well tomorrow.

PS no walkies today, at Birmingham hospital clinic whick takes up most of the day. After i’d seen the consultant i told my wife i was determined to walk all the way (about 1/2 mile lol) back to the station. I got halfway back when i got a call from the clinic asking where i was because i was supposed to see the diabetic nurse. When i collapsed back in a heap (metaphorically but nearly so!) at the cininc the diabetes nurse said i was supposed to see her every clinic. Well none had told us. She couldn’t understand how come this was my first visit to her yet 5th visit to clinic. Simples, no instructions no can do 🤭

[alfredthegreat in reply to Hidden]

They told my wife that I wasn't to lift a kettle or an iron for 3 months, she just about collapsed laughing!! Hoover??? I'm not sure what it looks like!! What happened was I still have dressings on and everything had healed to a slight leak and then all of a sudden the dressings were blood soaked again So I've been confined to bed (by the wife) until the district nurse has been and probably a day or two after. Had to go to local hospital for blood test this morn and still having to use wheelchair there, will be glad when that's done with and I can walk it! only been to 2 clinics and nobody mentioned diabetes. I am type 2 but it's been fairly well controlled (mainly because my wife controls the shopping and cooking, lol .actually without my wife's intervention over the last few years I'm sure I wouldn't have made it to transplant. My diet has been so healthy it's a wonder that I'm not jogging to the clinics! lol.) Hopefully the district nurse will not reveal anything nasty under the dressings tomorrow and then If I take things easy I will heal completely before too long. All the best.

[Hidden in reply to alfredthegreat]

If you are diabetic i would have thought you should be seeing a diabetes nurse. Maybe you totally control it by diet? No metformin?

Also have you not had to take your blood sugar readings 4 times a day and record in a little booklet which should (well in my case and im type 2) be looked at by the consultant and the diabetic nurse, they then decide if you have to change medication/dosages. Don’t you have to inject yourself with 2 types of insulin? One is a big shot and lasts all day and the other 3 times a day is a booster with three different amounts during the day. Hmm if you say no that’s interesting. I go to Birmingham Queen Elizabeth hospital which is world renowned for liver t/ps, my gosh they know what they are doing! (I’m not saying your clinic doesn’t but it would be nice to know whats or why different)! Anyhow this is my experience and im not telling you to do anything- its all up to you as the admins on here keep telling us 🤭

Good luck tomorrow- i want a photo of you jogging soon yipee!

[alfredthegreat in reply to Hidden]

Yes, I'm definitely diabetic. I take metformin twice a day. It's usually a lowish reading in the morning before food (anything from 4 - 6.5) The highest in hospital was 16 about half hour after I'd had some apple crumble and picnic bar. I used to take 2 tablets twice a day but now only one twice a day. Maybe they consider that to be ok without further testing by them. With weekly blood tests happening for other things maybe they are keeping an eye on that too. My transplant was at Addenbrookes and my first clinic was there and it was a meeting with a specialist and a nurse. My second clinic was at Queens Med, Notts because they have what they call a combined clinic, Addenbrookes Liver transplant team and queens med liver team. At this meeting my surgeon was there along with other specialists on the team. There must have been about 8 of them there. ( Queens med is easier distance for me, Takes about an hour travelling rather than 2!). Will deffo do a photo when I jog. I will even put on my superman t-shirt for the photo shoot, lol. The neighbour over the road calls me Lazerus. Think that they had all got me down for a gonner!!!

[Hidden in reply to alfredthegreat]

Mmm apple crumple yum yum. I went once a week for 3 months at a local hospital which was all about avoiding falling over (ref “dead” diabetic feet lol). It was all day and you got lunch. Every time it included chips and sponge pudding with custard 😋 yum yum, all the things i wasnt meant to have. Figure that!

Well i dont know what to say alfred, i mean addenbrooks and queens med (im from derby area!). You seem very well looked after 😊

So, I’ll just look forward to seeing a piccie of superman.....yeah!

[alfredthegreat in reply to Hidden]

They probably thought that if they put chips and sponge pudding on the menu that you would be sure to show up to appointments. In fact had I known about it I'd have turned up too! lol

[Hidden in reply to alfredthegreat]

PS a hoover is a rectangular device with a brush that goes round and with a motor that may or may not be part of that assembly. You turn the motor and wirry bit on using an ON/OFF which is usually at the end of a pole, the pole being attached to the rectangular bit which makes a racket when you push the ON/OFF switch to ON.

Beware! All the bits sucked up by the wirry bit and the motor go into some sort of bag attahe to the pole.

Beware! Again.

Im sure i was just going to say something else...hmmm..ah well - sorry

[alfredthegreat in reply to Hidden]

Oh yes! I recognise that gadget now. It's the noisy thing that I beg the wife not to use when I'm watching the grand prix!!

[Hidden in reply to alfredthegreat]

Hey upp lad! How did session go today with nurse? No nasties I hope!.

[alfredthegreat in reply to Hidden]

It didn't look too good but looked better after cleaned up. Nurse is packing some kind of sterile gauze into the wound. It has to heal from the inside out. It's due to a hematoma post op. Going to stay in bed a few days to give it a good chance to heal. Slow but sure.

[Hidden in reply to alfredthegreat]

Oh dear. Well at least you are being well looked after. But its bad enough being in bed in hospital ( I dont mean at first but when you’re feeling a bit better) let alone at home. Lol i bet you’re thinking, just wait till im better, im gonna put my superman outfit on and show em whose the boss!!

[alfredthegreat in reply to Hidden]

Will be so glad to be up and about that I'll nip into a phone box and emerge as Superman and I'll be off to save the universe!! Had a phone call from Queens med today, they had chased up my mondays blood results and guess what?? They said they are perfect. YAAAAAAAAAHHHHOOOOOOO!! At least that very important part is good. just got to get my poor old body to follow suit! Hope you had a good walk in the sunshine today and are two steps nearer to recovery.

[Hidden in reply to alfredthegreat]

Thats great news, so good to hear mostly positive things. So how to get body tofollow suit?

No walk today. Bad day today, no energy and stomach off oh me miserum. Ah well #two steps forward and one back# song from my childhood 😀🇧🇧

[alfredthegreat in reply to Hidden]

Sorry to hear that. So long as the forward steps are more than the backward ones. That's what we all need! Hope tomorrow is a better day for you. I am going to start taking a whey powder drink to give me more protein to help my muscles and my wounds to recover. I'll let you know how I get on.

[alfredthegreat in reply to Hidden]

Hi again Twosmiles. District nurse came today and re-dressed my op site. The wounds are not completely healed yet but they are getting smaller. Staying in bed and having more protein seems to be doing the trick. Hope you had a better day today. Steps forward and none back!

[Hidden in reply to alfredthegreat]

Ah good news alfred 😀 👍🏻.bet you’re fed up with your bed tho 🙁

I never did biology and i am/was a systems engineer so i have no idea what proteins are - i let my caring (most of the time when im not annoying her with my mood swings 🤪) wife sort out right food. I do know tho that potatoes are carbohydrates yes yes yes top of the class.

Hahahaha

🇧🇧

[alfredthegreat in reply to Hidden]

Potatoes= chips. yum. I was told on discharge after the op to eat lots of protein because it aids healing. Lean meat, fish,eggs, greek yogurts, milk, nuts,beans etc, etc. I'm doing that but I've included having powdered whey in milk, whipped up like a milkshake with a dob of ice cream in it. That gives me lots of extra protein for a short while to help the healing. I've only been doing it 3 days (2 drinks a day) but it seems to be working.

[Hidden in reply to alfredthegreat]

And not forgetting, it’s a treat and tastes nice 👍🏻🇧🇧

[alfredthegreat in reply to Hidden]

Very fed up with bed!! but realise that better to stay here for a while and heal completely than prob end up with healing problems for months.I used to be quite strong, I had a small engineering firm and I was very hands on. Unloading steel from the delivery lorries, cutting it, welding it etc. it's difficult now to see my limbs without visible muscles but Superman will fight back!!!!!! lol

[Hidden in reply to alfredthegreat]

Yes! Go superman, go 😀

[Hidden in reply to alfredthegreat]

Speaking of hallucinations and the other side i had a great one when i was actually in hospital but in my mind the hospital was in the clouds and all the nurses were angels! That was nice actually 😀

[alfredthegreat in reply to Hidden]

Oh crikes! so similar. I was in hospital too about one week after transplant. Saw the clouds and the other side but my angel that came with me was a very caring male nurse called Martin, lol. Suppose it was because we were so dosed up with meds at that time.

[Hidden in reply to alfredthegreat]

Thats amazing perhaps we should start a thread see if it goes across lots of peope!

You didnt also hallucinate re:-

Attacking an island in a jeep in some war...

An 18 century street party going on noisily all night and i mean all night with wailing babies jugs of beer, gin etc! (I figured out next day because the nurse assembly area was next to us they chatted and joked and trod heavily all night)

An undercover BBC crew filming everything going on - funnily enough on the telly about a month after i got out a series of programmes with some nurses i knew and the ward i was in was shown! Apparently had been filmed about a month before i went in.

Submarines were nearby (lol this is Derby). The bed opposite me was empty before i went to sleep. In my hallucination a submariner came in threw his wetsuit on the floor and was put in bed. In the morning when i was lucid there was this chap in the bed with his anorak strewn on the floor.

Haha fun times - NOT. LOL

[alfredthegreat in reply to Hidden]

You had some humdingers there! lol. The only other horror one I remember is a person around my bed with a horrific face. There were bits sticking out of the face all over it, like large,huge chunks of ice. I had a lot of bad dreams that cleared from my memory as soon as I was properly awake. I bet it's pretty common bearing in mind all the drugs that go through the system, partricularly following I.C.U.

[Brett11 in reply to alfredthegreat]

I could see myself flying last time I bled out. I flew past my house and my hubby was sitting outside. I could see him feeling a draft of wind when I was near him. Then I was swimming vertically thru some black gunk and I couldn’t breathe. Then I woke up in icu.

Grant said that he could feel me near him when I was having the operation and he was sitting outside at the time.

Strange. Then the second time, all my friends were caught in a 2D world and I was the only 3D person who could save them.

Very strange??

[Hidden in reply to Brett11]

Hey brett - oh dear, yours arent nice either! Its all very strange makes you (orme anyhow) think about what happens next - but of course by that time nothing is actually working!

[alfredthegreat in reply to Brett11]

Hi brett. Sounds like everyone gets weird dreams. It's obviously the drugs running through our systems. All seems so real and frightening at the time!

[Hidden in reply to alfredthegreat]

Aaagh alfred NOT in any way nice 😖

[Edbergius in reply to Hidden]

My brother has had some very strange experiences. He took a long time to come back down to earth as he was in an induced coma for 2 weeks prior to the tx. We had many a conversation about the experiments they were doing on aliens in intensive care and he was regularly being visited by nuns. He also thought it was 1877!

In all seriousness though, he did say plenty of them were quite frightening.

[Hidden in reply to Edbergius]

Hi Ed

Omg Do I sympathise or what. Even now 5 weeks post tp i still have a couple of occasions a night when watching telly and i’m having a really good one to one conversation with my wife I end up saying “what do you reckon, then” (or something equally trite) and she Miles who have you been talking to - in your head!, but absolutely real to me!

[Edbergius in reply to Hidden]

It did take a couple of months before he was thinking clearly again but he's completely fine now. It will definitely pass!

[Hidden in reply to Edbergius]

Good to hear!

[Hidden]

Oh yes i also have pain killer called predsomething lol

[Adelou]

Just asked the hubby if he had any pain around his incision & he only had some pain around 3 weeks after transplant, he was discharged with tramodol but has barley touched them, but was on paracetamol for the first few weeks after discharge.

His main issue is aches and pains so has been put back on steroids for 5 weeks as they think they took him off them too early

Hubby was 5 months transplant on 12th Sept

Everyone's pain threshold is different though

Hope it gets better for you

[Isabelle2 in reply to Adelou]

That’s interesting. I too had terrible pains in my hands. I was weened off steroids but the pain went on and on. Saw a rheumatologist who said hands fine. With drs we reckon it’s the immunosurppresseurs, advagraf and cellcept . Changed cellcept to similar, myfortic but pain continued. Now it’s slowly got a lot better although not disappeared 15 mths later. Someone on here said he had the same sensations for about 18 mths.

Hope this helps.

Isabelle

[Adelou in reply to Isabelle2]

He has mild joint pain ..hands, back, knees, ankles & shoulders but before transplant had severe muscle wastage ...im just wondering if it is because he is now starting to build muscle again. I guess we will find out in 3 weeks time when he is taken off them again

Can't remember the name of his immunosupressant

[Hidden in reply to Adelou]

Hi adelou that has helped me, im still on paracetamol 6 a dayish, and max 3 codene a dayish. Never heard of tramodol!

[Adelou in reply to Hidden]

It's an opioid pain killer that can be addictive

He had to go back for a week after first discharged after his transplant and they had to look it in the high secure safe, not the normal drug safe as it is a controlled substance

[Isabelle2]

Hi. It might be. I too had severe muscle wastage. At first my specialist was dismissive of my pain but each month I complained. Then coming on here I found a fellow sufferer and both the meds state it is a recognised side effect. At first I couldn’t put my socks on, or bra. Undressing, pulling stuff over my head was painful as it was also in my shoulders. Turning a key was impossible. Now I feel it in the mornings and have adapted my handwriting as it hurt my little finger but it’s much more liveable with and not worth mentioning compared to the gift of life I was given.

[Danisleigh]

My sons pain seemed to go really quickly, he was discharged from hospital at 11 days post with just paracetamol and only took them a couple of times. 7 weeks after transplant he was back at his part time job....he was 16 though and wasn’t sick when he had the transplant so went into the op pretty fit and I am sure that must make a difference.

[alfredthegreat in reply to Danisleigh]

Hi Danisleigh, I expect it must be a huge advantage to have youth and fitness on your side. Power to his elbow! Wishing him a very long, happy and fruitful life.

[Danisleigh in reply to alfredthegreat]

Thankyou. Yes I think youth and fitness has been a benefit and although at first he was angry and couldn’t get his head around why he had to got though something so major when he wasn’t sick I think he realises now that it has been an advantage in his recovery. Five weeks is still no time at all though when you think of what your body has been through, I hope the pain improves for you soon x

[alfredthegreat in reply to Danisleigh]

Thank you Danisleigh. I'm staying in bed for a day or three. My wounds are being stubborn to heal. Apparently it's because I had a large hematoma post op and now there are a couple of places that have to heal from the inside outwards. Too much movement seems to aggravate the situation.Will be so glad to walk about again, hopefully before too long.