My doctor has said the next time I see her she will discuss putting me on the waiting list for a transplant. I'm absolutely gutted. Part of me wants to say now as I'm still fit and healthy on the outside but she said I have chronic liver disease and cirrhosis. I'm at high risk of cancer and other serious health issues.
Has anyone here had a transplant? What's the process like? What's the life expectancy of a transplant patient? I heard I'll be at high risk of developing diabetes and on many meds for the rest of my life.
Is it true that once you have hep c you have it for life? Even with a new liver?
Any advice will be much appreciated.
Written by
acjb007
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Hi again, hope I can help alleviate some fears or add to your knowledge a little.
Transplant is seen as a treatment option when all other avenues have been tried and ruled out for leading to an improvement in liver health. It is a massive operation and although your doctor is going to 'discuss' listing at your next appointment if you are in the UK you will not actually be listed until you have undergone a very thorough assessment period (in a lot of centres, this involves a 4-5 day stay in hospital where your overall health as well as your liver health is examined, heart tests, lung tests, scans of various types, blood tests, psychological tests, meetings with surgeons, anaesthetists, social workers, psychiatrists etc.) This assessment gauges your current liver health, life expectancy etc. Various calculations are carried out and at the end of the assessment the various professionals will sit round a table and decide whether you are a suitable candidate for transplant? Has everything else been tried that can be? Are you otherwise healthy enough to endure what could be 10-12 hours of surgery and the lengthy recovery period afterwards. A person being listed needs to 'score' 49 on the UKeld Scale for the UK transplant list unless there are other factors such as the presence of tumours which might make that person more of a priority case. Where alcohol is a contributory factor a certain period of abstinence is required and they will demand a contract whereby lifelong, post transplant abstinence is signed up to.
If it is decided you will be listed then you'll end up in the same boat as my hubby who was listed in July of this year following assessment in June. We attend clinic appointments every 4 - 6 weeks where the transplant team check on his on going health, a dietician is bulking him up so that he will have enough 'meat' on him for the operation and recovery and he has comprehensive blood tests taken. A transplant co-ordinator is always present and we can also request to see psychiatrist or social workers or other professionals if we need to. After the doctors see you at clinic they and the co-ordinators look at where you need to be on the list, owing to the shortage of livers available only those with the highest clinical need will get a transplant. Although hubby is probably in for a long wait we said we would prefer to do our waiting 'on the list' as at least he is being very thoroughly monitored and if his health should take a major dip then hopefully he will rise up the list and be in a position to get a transplant and potentially his life back.
At our assessment we were told that the only liver damage a transplant can 'cure' is alcoholic liver disease providing the patient complies with the no-alcohol afterwards. My hubby's condition is auto-immune caused so there is no guarantee that a new liver wouldn't also be attacked by his own body, same with the viral hepatitis type conditions etc. Patients still require life time follow up to ensure that the body doesn't reject the new organ and that the pre-existing condition doesn't return. Like you rightly say you would be on anti-rejection medication and some immune suppressant medication for life. There is also as your rightly say a risk of developing diabetes and during all liver transplants you also have your gall bladder removed so it isn't without its drawbacks - hence they won't risk giving you one unless you absolutely need it.
As you've said you could be at risk of cancer, we've been told that cirrhotic liver tissue is treated as pre-cancerous cells as it really is dead tissue and just the type of breeding ground for nasty little tumours, you should already be having regular blood tests for AFP which is an enzyme that liver tumours give off plus you should also be having 6 monthly ultrasound scans to check for these too. Post transplant docs will demand you undergo all the cancer screening available i.e. bowel plus precautions against skin cancer etc. etc.
All this information and more will be discussed at length during your transplant assessment, post transplant you get even more information regarding the ongoing drug regime etc.
There are many positive folks on this page whose lives have been turned around (for the better) after transplant, life expectancy can be as long as a normal healthy person although there is a risk of a need for future transplant as rejection can occur many years down the line but following doctors orders, doing every thing you are asked and told, having all the tests, attending all appointments and getting the drug regime organized it should hopefully all go well and it should give you your life and ambitions back - that is certainly what me and my hubby are hoping for should he eventually desperately need and receive his hoped for transplant.
I hope that's helped a bit, sorry its one of my usual lenghty speels but I like to be thorough in my responses.
All the best to you, love Katie
Great response from Katie. Just to add, I had a transplant 3 years ago and am fit and healthy and expect to remain so. A new liver is a better prospect than a chronic condition. Mike
Hi...I had a liver transplant in January due to autoimmune disease. I was waiting around 2years...but was getting steadily worse. I have been well since due to doing everything I am advised to. Pbc is still likely to rear it's ugly head but I am positive that with help I will continue to flourish. Autoimmune conditions don't completely disappear but I didn't realise how ill I really was until I received my gift of life. Hope this helps
I am afraid I need to correct some of Ayrshirek's comments.
My husband is just approaching his third transplant anniversary.
Some of the comments were not quite right.
The gall bladder is not always removed, my husband still has his.
He had Alpha 1 Antitrypsin deficiency which caused his liver to fail and IS curable by transplant, obviously
providing they don't use another undetected Alpha Liver. This would be very rare , but I know of one incidence where this happened, as Alpha1 takes time to detect with a biopsy and this time scale is not available when removing a liver to use for transplant. Therefore my husband is cured and Alpha 1 will not recur as he now proves negative for this condition.
Regarding AFP this is a protein which would normally rise when Hepatocellular Carcinoma is present.
My husband was negative for this all the way up to transplant , but when they removed his liver there were over ten tumours the biggest at 3cm. Had these been discovered via a rise in AFP pre transplant ,he would have been taken off the list, so it was a blessing in disguise, but shows that AFP Negative is not always a reliable indicator.
The transplant will only be carried out if your pre assessment can show that your body can cope with the surgery .It is also carried out to ensure that you have no other underlying problems that could result in your death within 5 years. Hence the guarantee of 5 years but most people survive a lot longer.
You will be on anti rejection drugs and monitored regularly for the rest of your life. But that is better than suffering and eventually dying from the diseased liver.
Hi acjb. I'm confused, in a different post you said you had ALD and this post you are asking about Hep C. If you have ALD, then like many others you should be able to get a bit better with careful management of your liver damage, and obviously by not drinking. If you have Hep C on top of the ALD then things get tricky. Have you come to the end of the road re trying to clear the Hep C? If not, then your doc should be looking at treatment options for you, not transplant. If you still have Hep C and have a transplant, you will be advised to treat the Hep C after the transplant, it's unlikely you would have a transplant and then the medics would do nothing about the Hep C, as its in your blood and will attack the new liver. Sometimes people are too unwell to treat the Hep C and then a liver transplant is the only survival option to then go on and treat - do you get what I am saying in a roundabout way, transplant or no you HAVE to treat and clear the Hep C.
Having said that, it may be that the docs are just preparing you mentally for the possibility sometime in the future, as an option, should you not be able to clear the Hep C through drug treatment. My hepatologist introduced me to the transplant team at Queens Hospital Birmingham, as I have cirrhosis, had HCC, have HBV, and have AIH. But I am managing on medication and nowhere near even thinking about needing a transplant, my doc just wanted me to understand and get my head round the possibility.
I had a transplant nearly 2 years ago after being on the list for 18 months. I was very close to being a vegetable but now my mind has come to life and I am a member of society again. I have taken 2 courses of study on line from Edingburgh and Tokyo universities and passed both with excellent marks. I am 69 years old and feel more like 50. There is a full life ahead for you. Best wishes.
When I was in hospital I was treated for hep c. Can they clear it or does it stay in my system? I'm told now I have alcoholic liver disease and chronic cirrhosis. A year ago I was told if I never drink again I'll live a fairly long healthy life. Now, after my fibroscan which scored a massive 75 out of 75 I'm told I'll need a transplant. My blood test showed everything is good and I'm I feel in great health. The whole thing is confusing.
My hubby was diagnosed with Hep C Nov 2013 and started treatment March 2014 he had 48 weeks of treatment, weekly injections and 6 tablets a day. He was fully monitored through out the treatment. His course finished earlier this year and he was told his Hep C virus was now "undetected" he will be tested again after 6 months.
The consultant said the Hep C antibodies do remain inside your body, so if a doctor was to test you again, they would be able to see that you were once treated for Hep C however the actual virus may never appear again. Basically there is no guarantee the virus will not re appear. You need to ensure you're monitored for this and have blood tests so you know where you stand.
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