Hello, I've been told by my doctors that I'll be put on the waiting list for a transplant at QE Birmingham in 6 months' time. I live in S.Wales and was wondering if many appointments and hospital visits will be needed once on the list as I'm thinking of the travel involved.
I'm also slightly confused about the amount of 'waiting' time I can expect once on the list. Any advice would be much appreciated.
I have no idea but why 6 months time?Do you have to prove commitment for 6 months before going on the list?
Hi, yes I think so. At first they said 12 months. I have alcohol-related cirrhosis so although I gave up drinking more than 5 years ago I think they must need this period to ensure I'm 'clean'. In my personal case, I also have to gain weight and muscle mass to be fit for surgery.
Whilst on was on the waiting list I had monthly clinic appointments, 4 hour round trip. I was on the list for 8 months, but how long you will be waiting is so dependent on so many different things, some people wait days some years.If you use Facebook please feel free to join out friendly and knowledgeable Facebook group called liver transplant support uk.
Hilary
Hi I don’t want to frighten you but I have been on the transplant list for 2years , I was called in once but the liver turned out no good. To look on the brighter side all of the guys I was in with have their new livers and are doing well, so be patient and good luck to you.
Stay safe All
Dogbot 🐶🌈
So, have you been formally assessed or is this your Welsh Doctor just saying he'll refer you to Birmingham in 6 months time? I know the system is likely to be a bit different with you going cross border for your t/p (if needed). But, this waiting 6 months and then definitely being listed sounds a bit odd.
Ok, if you were having to prove abstinence then they would say we'll 'assess' you after 6 months. Not wait 6 months and you'll be listed (unless you have already been assessed and are now being 'built up' for transplant!! and QEB are already liasing with your Welsh Doctor to get you fit enough for t/p).
Actually getting onto the transplant list involves a thorough transplant assessment to identify if you are actually at the stage where you need a transplant - if they've said you can wait 6 months for even an assessment at this stage then you arn't in desperate need of a life saving op. just yet and that's all t/p is - to save your life when all other treatment options have been explored.
Assessment involves loads of tests, scans, bloods, breathing and lung health assessment, heart stress tests etc. to make sure you have no other health complications that could prevent transplant and to make sure that you are actually fit enough to under go transplant. Part of that assessment will also look at your dietary health, muscle mass and physical condition & you'd see a liver specialist dietician to help with your dietary needs in preparation for the op.
Also, lots of chats with surgeon, anaesthetist, transplant co-ordinators, social work, sometimes your mental health is looked at too plus support structures. I am sure they have systems in place to support Welsh patients and you arn't the only one who has made this journey.
When my hubby was on list at Edinburgh we had to go through from our side of the country every 8 weeks or so for 10 month - though he never ended up being transplanted because his condition stabilized a fair bit.
Once on the list the wait for actual transplant depends on a whole raft of variables - your clinical need compared to others in your blood group type, body size, type of donor organ you need (full brain deceased, full cardiac deceased, split liver or indeed potential live donor). This isn't like a queue where you get taken next in line, it depends on who on the waiting list matches most closely any available organ when it comes in and who of those matches is the most poorly. We've had members here who have actually gone to theatre, been anaesthetised and woken up thinking it was all done and infact the organ that came in for them had been whisked off elsewhere for an even more poorly patient.
Some people wait years (sadly), some many months and some on here have gotten the call to return to the hospital mere hours after having been listed. It just depends on how seriously poorly you are and how closely you match any available organ.
It's the post t/p scenario where you have to attend t/p clinic frequently in the first few months for medication tweaking and close monitoring that you'd need to work through though there may be some system in place (I don't know what) for patients going to and from QEB and Wales.
I wish you the very best of luck.
Katie
hi, you have done so well to get to 5 years abstinence - I think this 6 month wait is less about proving you can remain abstinent and more about ensuring you are strong enough HOWEVER if they feel that everything points to you needing a transplant now then I am not sure why they wouldn't refer you and get the other tests done. It isn't uncommon for people to go for transplant assessment and be told that they need more tests or that they will be reassessed in a couple of months after putting on some muscle. The assessment will take into account how you are on that day, your bloods and so on.
My partner is on the list at the Royal Free but we live about 2.5 hours away and since his assessment in the summer has only been seen by his local liver until.
I think if we were in your shoes I would be asking for clarification on why wait for 6 months now - have you been given clear instructions about diet and exercise to prepare for assessment?
Katie (and Rshc) have put it perfectly!They know more than I do and that's why I waited before suggesting you ask why your not being assessed right away instead of a Dr saying they will refer in 6 months.
Hi Trudi,
Good luck with your journey. Katie does make a valid point about assessment and I know doctors are not always that helpful in the language they use, lol.
What normally happens before listing is you go through an assessment to a) confirm you need a transplant and b) are fit enough to survive it. At the QE, assessment is done as an outpatient over 3 days, split in two parts. The first part of 1 day for shed loads of blood tests, an ultrasound, ECG, Chest Xray etc and a general intro to the process and then 2 further days a few weeks later. Its here were they'll decide if you should be listed for transplant, not listed or whether some other conditions would apply prior to listing.
Its not clear from your post whether you have been through that process or not yet, but hopefully that gives you a bit more insight into what will happen when your own hospital doctor refers you. I think what normally happens too, is that you will have an appointment with one of the liver specialists at the QE first before being referred for assessment.
Seems a convoluted process but it does all serve a good purpose. For me the clinic with the liver specialist was held at my normal local hospital as they had an outreach clinic with the QE, but I know others have been referred directly and had that initial appointment at a clinic at the QE. If they think you are ready for assessment, you dont wait that long afterwards to be assessed.
If you are listed, then the wait time is a "stick a finger in the air job". They tell you to be prepared and I know some who have had the call within hours of being listed and others that have waiting a couple of years. But everyone's circumstances are different. NHS Blood & Transplant do publish an annual report setting out average wait times at each hospital by blood group. I haven't looked for a while but I think at the QE the average wait was around 3 months, but do be prepared for a large degree of variability.
For me I waited 6 weeks after listing. I had actually just got home from my first clinic appointment at the QE after being listed, lol. So when they suggest you have a bag packed and ready it does come in handy.
Hi TrudiT
Like yourself, I am based in South Wales, and have been looked after by QE Birmingham. I had my transplant about 7 weeks ago, NASH- related issues. I was on the transplant list for 16 months, but it looks like everyone's experience is different.
On the List
Made the TP list
