Ive been told may need a transplant (liver, lungs and heart), im 28 and terrified. I have a blood Condition called HHT and my liver functions not returning normal after pregnancy where I was left with scar tissue ( cirrhosis secondary to condition and c section complications ) and ascites. Can't stop crying and in so much pain.
Scared: Ive been told may need a... - British Liver Trust
Scared
Written by
Alicja_mb
To view profiles and participate in discussions please or .
Read more about...
34 Replies
•
Anyone experienced transplant did it help them? Can I recover naturallying?
I look so jaundice
What do you mean recover naturally!?
I had a transplant last year at 42 years old. I was out of hospital in a week. And was able to leave the house after a couple of weeks. After about a month I could go about my day to day stuff no problem. Couple of months and I was driving, 5 months sponsored bike ride and back at work.
A year later I'm cycling to and from work which is about 20 miles a day and now the weathers not do good going to the gym, and doing spinning classes.
I imagined I could not have a normal life back, but my quality of life now is much better than before.
You should try to think about the transplant as a gift that will help you get well again.
Hello Alicia,
So sorry to hear this - you must feel terrible at the moment, it's completely understandable.
I'd not heard of HHT so I quickly looked it up so I could get something out to you quickly. It looks like a genetic condition which affects the formation of blood vessels. If blood vessel formation is compromised in an organ like the liver than the function can be affected. It can also occur in other parts of the body.
As you say you have jaundice it looks like your doctors have accepted that the condition has caused damage to the liver. The medical paper I quickly read mentioned that there are some things they can try to treat the condition but that if it doesn't respond liver transplantation is an option.
In the case of HHT the indication from the paper is that symptoms resolve in the majority of patients and that the long term outlook compares pretty well with other transplant patients.
A transplant is a serious operation, but many are performed these days and there are many people here who have had one and are living a new life so I know now will not be a time when you feel especially optimistic but there is a lot to be optimistic about.
There are a lot of really kind and helpful people here so do feel free to share and express your feelings and ask for advice. Everyone here will understand what you are going through. Also as you get details of your condition do post them and I'm sure people will chime in.
But in short, for your condition, should it be necessary a transplant is a viable option.
Very best wishes.
Thank you for your reply. I'm in shock. I want to see my girls grow up but I feel like giving up.
Tests and results take ages and my consultant only saw me to bare the bad news that I may need transplants.
I'm not healing fast enough my blood levels 60 but I lost 4 stone in fluid retention as an in patient. I begged to go home as I was in hospital 2 months the food, beeping of buzzers isolation made me sick. I feel so weak now from muscle waste. I keep talking to my partner like I'm dead already as I'm so negative.
Feel like no one understands my fear and I can't sleep, I feel pain but I know it's amplified psychologicaly when I was told and can't stop thinking about it. I worry if I sleep I'll die.
I know others are suffering too, what can I do to calm myself?
I can't say I blame you. It's like a hammer blow.
Firstly you should get as much clarity as you can about your position - either from your consultant or your GP. If the the consultant has used the word "may" then it would not seem that your need for a transplant is imminent - so you will wake up after you sleep.
The three questions you need to ask are;
1) What is the current state of my liver
2) What treatment options are there?
3) Which complications of liver disease am I suffering from? The most common are jaundice, hepatic encephalopathy (confusion), ascites (fluid retention around the abdomen), varices (varicose veins in your oesophagus, and oedema (fluid retention in/around the ankles).
If your GP can't answer them, then he/she should get in touch urgently with the consultant to find out. You should keep in close touch with your GP in any event.
You mention muscle wastage you have to address this if you can. Do try and eat a healthy diet - small portions speed across the day with a balance of protein and vegetables. It may be hard but it's important. Your GP may be able to recommend what and when to eat and some protein drinks to help rebuild your muscle mass.
If you have had any fluid retention you should normally reduce your salt intake right down - but check with your GP for your particular condition if that's still ok - I can't see why not.
If a transplant is on the cards you will need a referral to a liver centre. I don't know where you are located but if you say we can tell you about the best centres near you. In the UK liver transplants are only undertaken at a handful of advanced centres.
I don't know if there's a support group for your condition but I'll see if I can find one - and ask others here to look too.
Talk to your GP about pain relief and anxiety - although they may be unwilling to prescribe much.
I'm so sorry - I know it's a complete hammer blow to you. Understand that it's totally normal to feel panic, despair anger and a whole load of other things. Let them out when you have to. It's ok to feel them.
But also hold on to a few truths.
i) A liver transplant is not the kiss of death for you - you may have every prospect of living a long time
ii) What will happen as you realise i) is that for the sake of the kids it's something you will want to fight for. You won't want to be a lady in a photograph to them.
In between your feelings and thoughts try and unravel your condition, and what is happening with your liver - it will be horrible and scary but you'll feel better knowing than fearing.
Gradually you will take charge. For now, you have every right to feel like you do, but you're not going to give up. The time for giving up is when you have no hope left. And you do.
Best wishes.
Dear alicia i do undersrand your situ as i was very ill when i was pregnant with my 4th child ...ihad glandular fever which apparently made an autoimmune liver disease pbc...become much worse.i was told at one point that it would b me or the baby
If i got worse he had to be delivered or if l got worse he had to be delivered we were on a tightrope a wobble either way ! We botjh survived he was delivered 5weeks early as had stopped growing
...i had a bleed after having him and thought this is ut im a gonner.i cried buckets that eve as i was so relieved to be alive...the thought of leaving my husband to cope with 4 children on his own was awful.a few months later still feeling pretty poorly i was told i would prob need a transplant in5/10 years all i could think though was that if it had been liver cancer my odds would have have been so much worse.17 years on im now at the point of possibly being asessed to go on the transplant list...but my kids are all much bigger.its been a very difficult journey and i did fight for some homehelp time as my husband has worked fulltime through the whole thing!take any help offered rest whenever you can and if you have any energy at all do something nice with your girls.i use a mobility scooter sometimes especially for shopping or activity places.it did injure my pride but at least it meant i could go out with them.my youngest even had a bike seat fitted on the back of a larger scooter which he loved! So i do understand sort of but try not to be scared we can only do our best....your girls will love you no matter how incapacitated you are.hope this makes yoi feel a bit less alone and yes no one else has a clue what its like.how old are your children?. I was 36 when it happened to me a bit older i know but very active before hand. Best wishes..cazer.
Me again...as mister x said it is normal to feel frightened but try to keep your chin up for your girls...no one likes to see a said mummy....lots of hugs and cuddles are called for for all of you..from each other.i went from being a not very tactile person to hugging my lot daily...even the 11yr old boy who frequently said ugh mum but then lingered for a longer hug...ha ha...i made sure to tell them i loved them.of course i still got cross as any mums do but when i was first home from hosp...in and out for half the pregnancy...i could only cope with the bigger ones for a short space of time before the noise got too much and they would come and sit on the bed and lie with me and get boref and go and play but that was okay.treasure little things.....my second youngest who had only just started school came up after school one day and opened his hand ...which he had closed tight and said...ive brought you a present..some fuzzy pillows...needless to say in his sticky little palm were some hot pussy willows lve never forgotten this!!!hes now 20 but that made my day.lie and read with them or just chat those are the important things...i am sure you will not die in your sleep as i dont think its the way things go.however i was almost nocturnal and things are always much worse in the middle of the night...i now just put the tv on quietly sometimes for several hours and watch some mindless drivel then try and sleep again.my husband has done the morning school run etc since i was first ill or a friend then i could fall back to sleep!now im in sink with my teenager!!!!cazer.
A transplant will give you a new lease of life, at your age you have everything going for you, I would be pleased you are lucky enough to get the chance although I am not saying the 'you should be grateful' rubbish. I am saying your energy will come back. If you ring up hep c trust (I know you don't have hep c) ask to talk to someone who has had one. There is a woman there who jets round the world, does marathons etc she could never do before! I am in my 60s and had cancer when I had mine so really I had it too late (although I am alive to tell the tale whereas I should have died) you will be fine, you are young! That makes all the difference.
Great advice and encouragement from Mr X and others. I can only imagine how you must feel; at such a young age/ also at Christmas and with children. If you are in a depression it will be difficult to come out of; but never give up.....look at the stories that have been told here.....so there certainly is alot of hope for you to have a good future....though i can understand why it doesn't feel like it right now.
You need support and you will get it from here/ and find out about support in your area; yes, ask all the questions; do what you can regarding a good diet re your liver and think of your children; think of a great future with them.
All the best. x
Hello,
I am 29 and had a transplant 7 weeks ago after 16 years of liver disease. I feel so much better now than I did pre-transplant and although I won't say the experience was easy, the decision to have a transplant was. Recovery is tricky at times and you have to be determined to get yourself better.
If you are struggling with negative thoughts about your condition and your prospects, it might be an idea to request a referral to a liason psychiatrist. They help people with long term conditions and those facing life-changing operations to cope with the thought process behind it all.
Keep asking the medical team questions- there are no stupid questions when it comes to your health.
As others have said, keep thinking of your family and see them as the best Redon to be positive and get through this.
All the best, Jenni 
Hi Jenni,
Thank you for your kind words and hope you have a lovely Christmas.
I'm coming to terms that transplant might be only solution.
It was just a shock as early October I had no health problems and then suddenly wake up in intensive care and told I nearly died.
I think liver transplants have a good sucess rate and people feel miles better but I guess it's a waiting game. What scares me more is im told I may need a triple transplant (lungs heart liver) as my lungs couldn't hold the op and its better to do a set of heart and lungs rather than lungs alone. Someone else would be donated my heart. Not sure on sucess rates on this but it would be carried out in Newcastle.
All sounds scary, do the do plenty of tests before putting you on the waiting list?
Trust4British Liver Trust
Hi Alicja_mb
So sorry to hear how you are feeling and what is happening to you, do call us on 01425 481320 or email info@britishlivertrust.org.uk if you want to ask questions; also check the list of support groups on our website to see if there is a transplant or general group near you britishlivertrust.org.uk/li....
There is lots of support here online and in person when you need it.
Make sure you ask the questions and if you are confused about anything give us a call.
Best wishes, British Liver Trust.
Hi alicia how u doing?prob busy trying to cope with christmas prep....love this time if year but dred as well....hope you coping.x cazer.
My first daughter is 7, my other is new born, I had to deliver by emergency c section 11 weeks early. When I woke up 7 weeks ago in intensive care I had lost 2 days memory. I feel so weak but I begged to come home for xmas. My baby has done very well considering how early she was born
My partner has been great, and has 3 weeks off to help but I can barely hold her so worried I won't cope.
I just want to be the same me again, worried about pressure on my partner to care for me 
Cazer you are very brave.
Another thing mentioned to me was triple transplant as I have weak lungs.
How do you go relatively healthy to this in a pregnancy.
Mister x thanks for your info on hht. I believe there is a specialist clinic in hull. I might ask to be moved from Manchester to there. Is there anyone from Manchester under Dr prince currently?
He also seems keen on newcastles centre as he's worked with doctors there before.
Yes I am in Dr Ps clinic in Manchester. Obviously there are no transplant facilities in Manchester. Our nearest are Leeds and Birmingham but if you need lungs as well I guess you may go elsewhere. The Freeman in Newcastle is a major transplant centre so it may be Dr P is thinking of referring you there. I believe ideally the patient should be 2 hours away from the hospital but it doesn't always work out that way.
Hi Alicia, do you mean his medical decisions or his 'bedside' manner? I'm quite a complex case and I see him in his special cancer clinic. I find he listens to my concerns and is careful in his medical decisions. Sometimes I find his sense of humour a bit 'dark' and sometimes he doesn't like it if I butt in or question things. But overall I think he is a very caring man with an enormous and enormously stressful workload. I would hope with your case if he felt he was out of his depth he would refer you to a more specialist centre.
Yep he knows his stuff there's no fault. But I as you said he's a busy man I found I would of liked to see him a bit more. I'm at his clinic on Monday s here's hoping.
My main trouble since coming home from hospital is feeling weak (still jaundice and shaky hands) but also my tummy doesn't feel right? Just alternate from constipation to dirreah and trapped wind. I'm hoping that's due to the meds I'm on rather than the actual liver?
I had 4 stone of fluid drained for weeks and barely moved.
Sorry to hear some stories, I may seem ungrateful but it's more my ignorance. One moment I was fine and then the pregnancy completely changed everything. At least she's doing well I just to assumed I would get better but I was like a giant balloon with fluid now I'm scrawny but can at least move. To be told my damage is irreversible is devastating just before Xmas. I don't even drink alcohol or smoke.
Don't know how I'll look after my baby once my partner is back at work in the new year.
As Im sure you have been told your liver damage has not been caused by alcohol or smoking, its connected to this genetic HHT condition from what you say. In fact there are many of us on here whose liver has been damaged by reasons totally unconnected to alcohol or smoking.
The news of serious illness is a shock so you have a lot to take in, as well as all the hormonal and life changing moments that come with having a new baby. But if a transplant is what the doctors think you should prepare for then I'm sure they would not have suggested it unless they thought it highly likely.
What you need now is to get as much support organised around you from friends and family as you will need help with the baby, not only when your partner goes back to work but in the event of you being in hospital.
In between clinic visits to Manchester are you able to get your GP on your side to keep an eye on you.
I really appreciated all advice given to me. feel like I'm not being dealt with at MRI quick enough at the moment. The Dr was keen to see my new born baby and he took his time at the appointment to chat and I know some of the other Dr's are not like that.
I have stabbing stomach pain and I think it's the lactulose. I also have chest infection.
How is everyone else doing?
It's such a tricky time of year to get help as most places are closed.
I feel guilty on my family for being bed ridden and such a burden. I was ignorant in thinking I'd perk up right away. I can barely hold my baby and family are looking after her.. well until next week then I don't know how to cope.
Really hope everyone else is having a better time. And good luck for 2016! Xxxx
Hi Alicia and sorry you feel abandoned by your team at the MRI. Can you remember what was discussed last time you were there, were they going to refer you or were they going to wait a bit longer to see if your liver got a bit better. Is anyone looking after your heart and lung health, you said in another post the doctors thought you might need a triple transplant which suggests all those organs are not working properly.
Do you want to be assessed for transplant now rather than wait? Remember the MRI is not a transplant centre, you would have to be able to go somewhere like Newcastle. Whatever the future I do hope you and your family are building up a network of people who will help you with the baby and your other child as you are not suddenly going to be fit and well next week. Do they grasp that? Also if you do have to go to Newcastle you will need full time care for them so they are safe and sound while you are away.
The other thing that occurs to me is that you and your family bear in mind you still have HHT. In fact someone else in your family also has it. You have it because you inherited the gene from someone else. Although your concern on here is the damage it has done to your liver, is anyone monitoring you or treating you for the HHT?
Like Mister X I know nothing about it, only that you are missing some part of the blood vessel/arterial network so I assume there was blood flow damage through your liver which is what has caused the liver symptoms (are they saying you also have blood flow problems in your lungs. some people with HHT have problems with the formation of veins in their lungs)
Did you have any bleeding problem prior to the pregnancy, such as frequent nosebleeds. Is anyone monitoring these bleeding issues for you now, obviously HHT itself is not a condition Dr P specialises in, his area is looking at the damage HHT has done to your liver.
He's waiting to see if I improve first. I have a sharp knife twisting pain on my right side and started yesterday stomach to back. Should I go back to hospital?
Dr P is liasing with the other specialists. I know silly but yes I just want it done. As I'm bed bound at home. How long does it take to recover from ICU and 2 months of hospital bed?
I knew about the HHT the tests years ago for AVMS were fine. I have nosebleeds but laser treatment helped.
Alicia you are a complicated case and I'm not medically qualified, but sharp pains that have been troubling you for a couple of days sound like you need to ask a doctor. As it's Saturday afternoon I would say either out of hours GP, NHS 111, or A &E. Do you have any other new symptoms.
The recovery question is it will take as long as it takes. I haven't any idea how long your doctors are prepared to wait to see if your liver function improves. I would guess that as you are a complex case and quite sick that your case will be reviewed on a once a week basis at the MDT meetings doctors usually hold in hospitals. That doesn't mean you see the doctors once a week, just that they keep your case at the top of the pile for discussion and review. From what you say your liver and your lungs are weak, your muscles will be weak for being bed bound, and your hormones will be all over the place from the pregnancy.
I doubt you will feel you are on the road to recovery until your liver and lung functions are normal again. Did they monitor your HHT during the pregnancy?
I'm in hospital as we speak, my temperature spiked to 40.8 last night and I was taken from trafford health centre by ambulance to a&e mri. Lft were unchanged but an x ray showed infection in right lung. I'm also on oxygen with a mask on to steady heart rate.
A haematologist was monitoring me in pregnancy.
In fact I went for a 10 minute appointment and he admitted me as an inpatient to get tests done quicker. It saved me and babies life really as nothing was expected I just thought it was anemia.
It's weird... when they think it was heart and lungs danger it was the liver. And now I thought it was liver it's my lungs.
I'm on a ward bay with mainly 80 year olds, and they have healthier organs than me :/
Sorry to hear you are poorly, hope they get the infection under control soon. While you are an inpatient and have the docs close by, maybe now is the time to ask the questions you have been asking us, such as an update as to how your organs are functioning, the transplant prognosis, and the recovery questions. I believe Dr P has a Monday clinic, so maybe the ward doctors can contact him them and get him to update you on your liver while you are in the same hospital as Dr P!
I think it would be useful if your husband and close family could come in and speak to the doctors while you are in the MRI, as you are clearly anxious about whether you can cope looking after the children once your husband goes back to work. I think they need an update as to how you are and how likely it is you will be able to function well enough to care for the baby when your husband goes back to work. Can your mother or mother in law or any other close family step in to take over your responsibilities for a while.y
So at mri lools like dr p has gone somewhere else now dr Greer. Still in hospital and temperature up and down. Radiologist mentioned possible liver abcess in so much pain under ribs but problems with chest too as had infection and not responding to antibiotics. So hard to fight.
Hoping the best for you. What are they planning to do and are you on the transplant list?
I'm being treated with antibiotics for a liver abscess. On morphine for pain but even that isn't enough. Getting referred to leeds to be scored and tested for potential transplant.
Jahida I'd be interested in hearing your story and thoughts. X
Hope things start to look up for you at Leeds Alicja. As a transplant centre the chances are they will be the better place for you than Manchester. Good luck and keep in touch
Thank you so much. I'm hoping to find our Monday after ultrasound scan. I've had too many ct scans apparently and can be bad for you?
Not on a list yet but it looks like he's going down that road for sure. Not sure what tests they need to do first plus if they can with the temperatures unless it can be some sort of emergency?
Not what you're looking for?
You may also like...
So scared
Hi,
I know this isn't a forum for specialist advice but I'm at my wits end and wondered if anyone...
Scared
I’ve been feeling a bit rubbish very tired ,had some tests showing elevated ALT ranging between 47...
Scared
Can anyone tell me why people are on lactulose and what it does? I think it is a stool softener?...
scared
have been diagnosed with cirrhosis years ago.have developed red spots on chest,and itch a...
scared
I’m really scared, my kpa was really high , so was another percent score (not the cap …that was...
Scared
Scared
scared newbie
Scared 
