So, that’s where I am. Blood test results indicate it’s rejecting, heading back to hospital tomorrow for scan, more blood tests, possible admission, biopsy and I don’t know what else.
I am beyond myself with worry. No way I can have any more surgery, I’m still in pain from the transplant and drainage for infection.
Anyone else been through this? What can I expect tomorrow? How do I even get to tomorrow?
Easy for me to say, I know, but this situation is not uncommon. Never the less it is really hard for you to go through the roller coaster of emotions and physical ups and downs.
Hang on in there, they will be able to sort it out.
Take care
Thanks for the swift reply. Can they do something without more surgery? I’m still sore from transplant/aspiration and the prospect even of having a catheter put in the back of my hand is something I don’t relish, so more surgery is not on my list.
I am really anxious.
There is a lot of fiddling around that can be done with the medications. Believe me, transplant surgeons are about as keen on re operating as you are !! A biopsy will help them work out the level of rejection. Some people do get away with no epsides of rejection but i would say thay they are in the minority.
All l can say is so sorry to hear this and wish you the very best for tomorrow... stay brave xx
Hi
Just backing up what trust say,also I had some rejection and was told that some signs of early rejection can actually be a good thing.Mad i know
I hope you don’t mind me asking but did they manage to stabilise the rejection without any physical intervention? I’m still so sore/tight from the transplant and the aspiration procedure for the infection I picked up I genuinely cannot cope with the thought even of another blood test.
I really am struggling with the blood result as I was it expecting it. I’ve managed to put on almost 3 kg and given that I was 46 kg that’s a massive achievement so I thought things were going well.
I’m so sorry that I am so negative/pessimistic but I genuinely feel terrified.
Yes they managed to get me on the right path again by juggling my meds,they kept me in while they did this for 3days mainly so they can keep taking blood tests but of course we are all different,but taking you back to surgery will be the very last resort.
Your fears are totally understandable you are going through so many emotions right now,it will take a long time to recover from what you’ve been through but I promise you by doing everything the consultants tell you It will soon be a memory as your new life gains momentum and you start to feel amazing
Huw
Thankyou for your reply. The doctor did say to bring overnight things with me but all I can see and feel at the moment is the pain and discomfort I am in.
The transplant for me happened so quickly, I was on the list less than 4 weeks and to be honest, brutally, I just can’t get my head around it and increasingly feel a bit like a Frankenstein experiment. I know someone lost their life and donated the liver but right at this time I am simply not acknowledging that sufficiently. All I see is more pain. That makes me feel like such a bad person. I’m so sorry and don’t want to upset anyone but it’s how I feel.
We all respond differently to what’s happened and I personally believe you need time,4 weeks is a short time on the transplant list but a lot of us post transplant patients would of been ecstatic at that short time me being 17 months and on my first call I was actually taken into theatre and was 20mins from knife on skin when someone in greater need than me was given the transplant,when I woke up in ITU I thought the transplant had happened but wasn’t to be however 3 months later I got my precious gift and haven’t looked back,the reason am telling you this is to highlight how different all our journeys are,when they get on top of your rejection issues & the pain eases which it will you will start to feel more positive .
Am here to chat anytime
Huw
Hi, I'm sorry you are feeling like this, but I was told it is a normal reaction. I suffered from PTSD, post transplant. I was told that having a liver transplant is the most stressful operation that a body can go through, and therefore mental distress is just a part of that process.
I also suffered from survivor guilt, due to the fact I was so close to not making it. I had resigned myself to dying. I'd written letters to my family and planned my funeral, so to wake up to a future I didn't think I'd be having, was hard.
At one time it got so bad that I considered suicide. Thankfully I was able to talk this through with my husband and medical staff, and they made me realise that I'd been given the chance to live, not only for myself, but also for my donor. Good luck, and I know things will get better.
Hi Braveheart65,This happened to me very early on after transplant, A week after discharge I had to go back into hospital.
They increased my Tac and then the liver biopsy that they were talking about for the next morning didn't have to happen.
I was on my way back home 3 days later having had no invasive treatment.
Hoping that all will be well with you and you are back home again soon.
Keeping everything crossed for you.
All the very best.
Alf.
Thinking of you Braveheart, it’s always at the back of our minds. I have heard so often that they can do so much by juggling the meds. Hope this is the case for you too. Andy.
Hi Braveheart65 I’m sorry to hear you are still in pain and the negative thoughts are part of being in pain for soo long, but they now have you and fingers crossed they will soon have you sorted out my very best thoughts are with you good luck 🤞.Stay Safe All
Dogbot 🐶🌈
Thankyou to all who replied and for the positive thoughts of those who liked the comments.
I’m back home, having had scan (that hurt), more blood tests and a consultation with a liver surgeon.
There are no blockages, blood seems to be flowing freely, but a small cyst has developed or might have been already on the liver. It’s not causing them much worry but they’ll keep an eye on it.
So blood tests now weekly and anti rejection meds have been increased, back again on Tuesday for more blood tests and go from there. No biopsy today.
It’s hard for me to be positive as I’m in such a lot of pain/discomfort and mentally I realise that I am struggling with the whole transplant event; to be able to acknowledge that these bumps will occur along the way to being healthier is beyond me at this time. I hate myself for saying that as I feel I’m letting my donor down massively.
My husband and the surgeon both point out that being positive is such an important part of recovery and that anxiety/negativity isn’t helping me mentally or physically. I truly comprehend all of those thoughts but it’s not lifting me away from where I currently am. If I could just feel a little bit better, yawn without it causing further pain and stop being covered (arms, neck and chest) in blood marks, I know it would make a big difference. The blood marks are caused, apparently, because my blood is being thinned to stop it clotting in places it shouldn’t.
So I’m still breathing and I know I should be very very grateful for that.
The responses I got to this thread were so appreciated by me and show just what this forum is all about: sharing. Many, many thanks and don’t let my mood bring any of you down x
Hi Braveheart,Glad to hear that you are back home and that you didn't have to have a biopsy.
Generally most people have been so very ill before transplant and sometimes expect to feel so much better straight after.
It's a huge operation and the body has to take time to recover. The recovery part will happen over time.
It takes some of us a little longer than others but it will happen. Each week will get a little better and soon I'm sure you will be feeling much better than you have for years.
Meanwhile take things really easy, no lifting and only do what you feel you are fully capable of doing.
Hope that you feel so much better soon.
All the best.
Alf
Thankyou for those kind words. Pre transplant I was pushing myself daily but literally wearing away, I was at teetering just below 7 stone. I don’t remember much of last 12 months at all, I think I am blanking it out but I don’t know why. I know I had zero energy but just kept on going; no stamina but again almost walked till I fell down.
I had ascites in 2019 but managed to get rid of the fluid build up with meds and exercise.
At my assessment pre being accepted onto the transplant list, I couldn’t get over how poorly the other two were who were in the waiting area with me at the start of the day, they were both in wheelchairs. I felt such a fraud and told the surgeon what I was feeling, he said my blood results were grim and liver disease is such a devil at disguising how ill people can be.
After the transplant, whilst on the ward, my consultant came to see me and I spoke to her about the speed at which it had all happened. She commented “yes you were fortunate but you really needed it”.
Part of me just doesn’t believe that I was ill as I was still pushing myself so hard. So I suppose somewhere in my twisted head all of these pre and post transplant mish mash of thoughts and pain are not helping me now.
I am not in the best frame of mind, and I feel so bad about that for so many reasons.
As I said previously in this thread, I am so deeply grateful at this time for being part of this forum.
Don't even think about pushing yourself, especially right now. Let your body do the talking! Plenty of time to push yourself when you are completely healed 
Please try to put the survivor guilt in a box lock it and throw away the key,you would not of got your transplant unless you really needed it,the decisions made by the consultants/transplant teams country wide are made on suitability & how ill someone is,like your consultant said liver disease disguises itself very well in many cases,you would not of thought I was poorly by looking at me pre transplant,I looked well,I was working on my feet in steel boots doing 50hour weeks and walked from my bed into the theatre and hopped onto the table,but inside my livers tumours were growing to the point that another couple of months and they would of been to big and I wound of been taken off the list.
Your going through the long healing process and you must take your time and not do too much but also try to set some small goals like getting up every hour during the day and walking let’s say 100 steps and then gradually increasing this,you will be surprised just how good this can make you feel even if it does hurt.
I was told many times by many experts and specialists that liver transplant is the dictionary definition of "it gets worse before it gets better" and they sure don't put that in the "manual!"
I never had rejection, but it is common, as are infections, etc. You are NOT alone in these challenges, and try to take comfort that the doctors have seen everything, often all at once, and they know how to solve every problem.
I had a stent put in my heart 60 days post-tx as i couldn't breathe well. For a month, they chalked it up to anxiety until I finally walked (wheeled, at that point, likely) into the emergency department and demanded a cardio cath which I got (4 days later) along with a stent - 75% blockage in the widow maker artery!
You must be your own advocate - I should have a banner made with that phrase and fly it front of my house. If you aren't feeling well make sure to tell the doctors immediately.
I will say, the pain was excruciating at the transplant site for about 6 weeks or more and not great for almost 3 months. It is the nerves growing back that adds to the pain, oddly. Driving in the car 3x per week particularly bad with bumps in the US roads, and my transplant hospital was 4 hours away. Lord it was a challenging time.
And then, little by little, like a miracle, you can do one more thing every day. And in a few month's time you are going to be SO SURPRISED at how far you have come. Transplant is also the dictionary definition of "its a marathon, not a sprint" - just stay on the meds, stay ahead of the pain, and get a lot of rest.
PROTEIN is your biggest friend. Getting around is so hard and painful and exhausting because your muscles have wasted. Get 100 grams a day. Smoothies with BoostMax, or EnsureMax or whatever you have over there that has 30 g. protein, plus milk, plus 60 g. protein powder and a lot of fruit. You have to be religious about it. It will also put on weight.
Start physical therapy now, don't wait. I know it is bad now and the thought of "unnecessary" movement is laughable, but you must. It is necessary and if you hold off because you are still not feeling great it will take longer to recover. Trust me. You are going to feel like sh*t if you are doing PT or not. Might as well do it!
I promise it will get so much better -- you have to wait it out, but some of it is in your hands (protein, PT). I am healthier and more fit at age 48 than I ever was before thanks to this lifesaving surgery and my gratitude is without bounds.
I have found that committing to spending part of the gift of my new life trying to help others in a meaningful way heals the mind (guilt), while physically time and your doctors will heal you along with your efforts on protein and PT.
My very best to you!!
Wishing u the best on positive thinking and for a quick recovery to start ur new life. Ur truly blessed to have that opportunity again. Cheers!
Hi Braveheart, it sounds like things went well yesterday (an I right in thinking you're at Leeds or have I made that up? My husband was in having a scan too!)
From reading your posts it sounds like some counselling or something would be good. I can totally understand how the pain would make you feel down, I remember when my mum had her knees replaced she was very down after as she really suffered with the pain. As others have said, the pain will get better, you won't always feel like this. Do the transplant team give you anyone to talk to about how you're feeling or could you contact your GP who could maybe put you in touch with someone? You've been through so much & are obviously also struggling with your feelings re. the donor and their family which I imagine is totally normal.
Hope you start to feel better soon 🤗
Lovely message, very encouraging news and pleased you're now home and can recover completely. Laura xx
Hi Braveheart so sorry to hear your news I would exactly the same I did have a rejection I was flushed through with a drip of Prednisalone for 3 days it worked for me. I hope it works for you. I have everything crossed for you
Woke up on Saturday with itchy rash from neck to hips and headache from hell. Stated feeling sick about 3 hrs later. From 1pm till 9pm vomited uncontrollably. Shaking violently, freezing cold. Husband phoned hospital who said if I don’t improve to phone 111 and request blood test and they’d go from there.
I stopped being sick about 9pm. Headache still here, still cold and my back and middle is sore beyond belief. Back at hosp on Tuesday. Just so poorly. Missed my 2nd anti rejection yesterday evening. Took normal dose this morning. Can’t eat as I am not hungry at all. Just want to try to sleep through this.
What an awful time you are having at the moment, it seems to be one thing after another. I do hope that even in the last 6 hours you have started to feel a little better.
regards
ps if you are no better/worse then you should not be waiting until Tuesday, call 111 again.
Thankyou Trust5.
I am in so much pain I didn’t think possible. It’s from vomiting so many times, I’ve even hurt my shoulder.
I don’t feel sick at the minute but still feel a bit itchy. I have a number to ring mom-fri 9-5 at the hospital and will phone them.
For the first time since the surgery I don’t want to be at home I want to be in hospital.
I am so sorry all my posts of late have been so pitiful but I literally can’t breathe as it’s so sore on my right side. I know it’s just because I have hurt myself being sick.
Hi braveheart how did u get on with ur hospital visit did they sort u out? I had a liver rejection but it happened wen i was in hospital sorted me out just had 2 stay in couple more days look 4ward 2 hearing from u
Hello and thanks for the post.
In short, no not really. This last weekend I had (and still have) a really bad headache, followed by itching then vomiting. But as I didn’t have a high temperature the doctor suggested that it might not have been liver related. Given that my blood results last Tuesday indicated rejection was occurring I found that possibility hard to accept.
My liver area and abdominal muscles are in screaming amounts of pain but the doctor was loathe to give me strong painkillers. So again awaiting blood results from sample taken today and see where that goes. It’s the first experience I’ve had of the hospital not really helping me much. I’ve lost 3 kg in weight from last weeks visit ( now hovering about 49 kg), presumably from being sick so many times and not keeping anything down.
To put my pain in context, it’s too sore to take enough of an in-breath to take my daily asthma preventative inhaler.
I am literally lying in bed trying not to move with occasional toilet trips. Miserable.
I am glad you didn’t suffer the rejection after discharge.
I am so so sorry to hear what you are going through. The pain is so uncontrollable and I know you feel defeated. Please don’t - I know it’s hard - please keep pushing through. Your mind right now is your power - use your mind to keep going - promise. Keep your HOPE. I was also an early transplant as well. I needed a transplant - I found out In Nov and I had my transplant Feb 3rd Less than 3 months and I was so blessed to have my transplant. I was so sick that I was 1 on the transplant list (in Canada) Just waiting for a match to me. I had only hours until I would pass if I did not get the transplant. In the middle of the night the doctor came in my room and said we may have a match. I really had to ask out loud - am I dreaming? Because I was dreaming that this happened but it did I not. I guess I’m telling you all this just as many many wonderful supporters of you say - everyone is different. BUT stay positive!!! One thing I found, the hospital I was in when I was sick - so so so much of my pain came from fluid build up. They gave me pain killers - did not work BUT the moment they drained the fluid from my stomach I felt instant relief. The most pain killer did not help - the drain did. I am going to pray for you!!
Please stay strong! You can do it. Talk to your doctor on options. You are in my thoughts 💜
Sending positive energy you way!!!😊💜
Repeat prescription for anti rejection tablets
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