My husband Les (60) has just been put on the waiting list for a transplant and we are both obviously scared and worried.
Has anyone else had one at Kings? as not sure what to expect. We haven't been given any specific instructions and not really sure what to do and who to ask - any advice would be gratefully received.
He was diagnosed with cryptogenic cirrhosis four years ago after an episode of black stools. He was then found to have many varices which were banded every four weeks over the course of one year. He has also suffered ascites and had 5 litres removed recently.
Unfortunately he was then diagnosed with COPD (Emphysema) and in December 2016 suffered an extensive SMV thrombosis.
According to his blood test results he is not in immediate need of a transplant but when he was seen by the surgeon he said Les had to have one within 6 months.
Initially the blood clot stopped them from putting him on the list so is now alos on Warfarin which seems to have reduced it a little.
We were told today that due to his blood group he could expect to have the operation within 6 months.
Any advice/information would be gratefully received as not really sure what we are expected to do now???
Thanks
Kim
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Kimlescam
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Yes I had mine there and they are well organised. You could ask to speak to one of the co ordinators as you should be allocated someone. Also he and you will have to have an induction with them unless its all changed since I was put on the list. Ring them up ask to speak to one of the transplant coordinators and they will explain the procedure. Bit suprised this wasnt explained.
Welcome to the Kings.
in reply to
I really hope everything goes well for him. Please take care. Lots of love Lynne xxxx
It went well because I'm still here!! The one thing I will say is Kings have been excellent through the whole procedure and journey. Once on the list I was invited in to a lengthy meeting in a room with the head co ordinator. My wife and I had so much explained to educate and prepare us for what is the start of the journey. We were given 2 large folders with all the info like contact details, meds I could take and those I cant. It was packed full of information. You can ask all the questions you want to.. so have a list prepared.
You will be monitored fairly closely now, though I am sure in your hubbys case he is due to his conditions.
I am sure you hubby will have even more tests in the build up. Your hubby should do all he can to not stress or worry about it as when he does get the call and the miracle occurs he will be fast asleep and wont feel a thing.
When I woke up I said to the coordinator are we going in now. I didnt realise Id had it!!
You both are being offered the chance of a rare gift.
Thanks we have had a roller coaster of a ride. He was assessed early June and refused a transplant as previously he'd had a small clot in his stomach but when he had a scan as part of the assessment the blood clot was "extensive". On the day before our cruise of a lifetime we had a call to say that I had to inject him everyday whilst away and then he had to go on Warfarin on our return. He was scanned again in September and the clot was no larger and had shrunk a bit.
We met with Dr Aluvihare in October and my husband was so scared that he wasn't sure he wanted a transplant. He was given until 25th October when we had an appointment with Prof. Heneghan to decide. They felt if he left it until after that it would be too late.
It took a lot of soul searching and finally yesterday he said yes. At that point we were told he's on the list even though his case hasn't been discussed at one of their Friday meetings again. I asked what happens now and we were told to go home and wait.
I assume they will have their usual Friday meeting so will call the co-ordinators on Monday. They have already been a massive hep and I assumed there would be another meeting but we haven't been told any more than that yet.
We have already been booked into Dr Aluvihare's clinic which is the "waiting for transplant" clinic and told he will be seen every 4 weeks.
I have read your story to my husband and hope it's helped him as he is so scared.
Did you have to wait very long for your call to come? and I'm so pleased yours went well. We have been under Kings for more than a year and have been impressed with how professional and helpful they are.
I was placed on the transplant list a long time ago. I was referred by a specialist who I was under a one year trial with. This is my 13th year. I had hcc or 'cancer'. In those days it was about 6months. I got the call approx after 10 months.
Tell your hubby everybodies natural first thoughts are to worry. My main worry was I would die and wouldnt see my kids grow up.
I was very fortunate in that I didnt have severe symptoms. Though I had portal hypertension, a mild varices and some I didnt even realise.
He should just follow everything the hospital says. No one knew I was so ill.I had total trust in my surgeon who I met many times pre tx. In those days the outpatients was on another floor and alot smaller. Now its in the new wing with a more comfortable setup.
Prof O'grady, Heaton et al run a very tidy ship there.
I have only ever missed 2 appointments in all these years. Once when they moved their appointments room and my appointment got mixed up. And once when that damn southern rail was on strike.You hubby will get cars to pick him up and cars to take him back untill no longer required.
Whats important is he holds on and has that tx.Its a long journey and even after tx there may be a hicup or two but Kings will be there when needed.
Sorry to hear about your dilemna but I am a bit confused.
When my hubby was put on the list in 2011 at Kings we were immediately given an appointment with the Co-ordinator to go through the whole regime. We were given all necessary info. I am wondering if you have been missed.
The other reason is ,you say he has cryptogenic cirrhosis. I was concerned when I saw that he also has COPD.
Has he been tested for or had a biopsy to exclude "alpha 1 antitrypsin deficiency"?.
This is a rarely tested for reason for liver disease which also causes lung disease (COPD).
In addition to other health issues.
Have any other family members had liver or lung disease, as Alpha is Genetic (hereditery)
Thank you no he hasn't had a biopsy. He has had breathing problems since infant school and was diagnosed with asthma at that time which seems to have developed into Emphysema. Our son has the same problem with his lungs but to my knowledge no other family member.
He originally had a fatty liver so although the original diagnosis was cryptogenic cirrhosis on his latest report they have amended it to NASH cirrhosis.
Am at kings right now waiting for bloods I am sure they will take good care of him when the time comes also have thrombosis of portal vein on warfarin it's good he is on the list I shall follow u for updates and good news best wishes
I am on the waiting list at Kings too. I have been on the list for 12 months now. I have Liver Cirrhosis (22 lesions), Portal Vein Thrombosis (collapsed) and blood cancer. I was diagnosed with everything 4 years ago. I have had 30 varicies banded, that's been over 4 years and had 4-10 endoscopies a year.
Once I was put on the list I went home and packed a bag; basic things really like, PJ's, smellies, slippers etc.... I hoped my call would come soon and that I wouldn't wait too long, but that's not been the case. It's been a long year!
I am on warfarin, spironolactone, furosemide, oral chemotherapy, propranolol and omeprazole. I would definitely try and ensure that your husbands INR is in range a much as possible. Mine has been all over the place....
Which Dr are you under? I am blood group O so know my wait is long I'm not doing too bad either, in the grand scheme of things anyway.
I am back at the hospital on the 4th December, I will be there all day - I have a CT scan in the morning and an appointment with my Dr in the afternoon if you happen to be that way and want to meet for a coffee?
I hope your ok, I remember the feeling when I was first listed and how my tummy flipped every time the phone rang....
Please PM me if you need to chat or want advice
Good Luck and I hope you don't have to wait for the call for too long.
We were told yesterday that Les should wait a maximum of 6 months but he is blood group A positive which I believe is really good.
Like you he has had more than 30 varices banded and there were a couple of Grade 1 varices there early this year but they decided not to touch them.
His quality of life seems to have deteriorated very quickly this year. He hadn't worked since May and has been trying to do a couple of days a week but it leaves him so tired and he has had major problems with Hepatic encephalopathy which has left him slurring words, and he has major balance issues so walking or holding anything is an issue.
The SMV Thrombus seems to be his biggest stumbling block but they seem happy to add him to the list now.
He is generally under Professor Heneghan but for the transplant we are seeing Dr Aluvihare and will be attending his clinic every 4 weeks to ensure Les remains OK to receive a liver. Which doctor are you under>
We are attending on 29th November (I may have to check the letter) but there are other test and he may need a further CT scan with renal protection and if we are there then will let you know and would love to meet for a coffee.
We met with the Consultant on Wednesday and Les finally agreed to go ahead with the transplant. We were given a follow up appointment in 4 weeks and told we would be seen every 4 weeks up to the transplant.
The doctor rang me today to tell us we were finally on the list - hooray but no mention of an induction etc,
Finally this evening heard from Wendy, a co-ordinator saying we have to go on an education day before we go on the list so a little confused with conflicting stories.
However we have the induction on Wednesday so then hopefully all should be OK.
Got to stop the Furosemide for a couple of days as renal function is not good then get bloods checked again.
Also high levels of amonia which shows he is having an episode hepatic encephalopathy so been told not to drive which has really upset him but he has balance issues, trembling and slurring. He's not doing so good at the moment. Introducing Lactulose to see if that helps.
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I'm not doing too bad either, in the grand scheme of things anyway. 
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