hi this is my first post have been reading for a while now my husband is the one with liver disease psc end stage we dont have all the details and not quite ready to share our full story yet but need some advice we have been given an appointment for birmingham was told by our herpetologist that this would be for assessment but have received one for a half hour appointment instead with a herpetologist there we are in cwmbran south wales so can be that care has been transferred as that wouldnt make sense is this a pre appointment to the assessment maybe will be seeing his doctor in two weeks as we will ow be seeing him every 6 weeks he has said these thing play on my mind and would like to know now what to expect of this first appointment in Birmingham ??? thank you in advance
birmingham appointment: hi this is my... - British Liver Trust
birmingham appointment
Okay, I think I understand what's going on here and really do appreciate that you are having to travel all the way from South Wales and it may seem pointless just for a half-hour chat. But please try and see things differently.
Even to have been given this opportunity to go on the liver transplant waiting list is a lifesaving privilege. (Some, don't make it even to this stage). This opportunity should be welcomed with open arms. The whole assessment process is like a well-oiled machine and has to follow a strict code of practise. There are around five different people and staff involved in the decision-making process and all these people need to be sure that not only are you fit enough to endure the operational procedure, but that you will look after this liver once you have been given this gift. This meeting is for your benefit and is to let you know first hand what to expect of the assessment and of what is involved. This is something that everyone has to go through, and while it may seem unnecessary, it is all part of the process.
I personally have had my liver transplant carried out by the wonderful staff down at the QE. You are in excellent safe hands, and I can’t recommend all the staff highly enough.
Good luck (If you prefer to message me privately, please feel free to do so).
thank you for you reply we do understand the gift that we will be given when my husband gets the new liver he is not an emotional person but get so when he thinks that someone has to lose there life for him to get a chance at a long life himself and doesn't feel that he is worthy. I realise now my post was a bit confused but we was only worried his primary care might have been moved there we didn't realise there would be an appointment before the assessment he is still working a 48hr week in work and doesn't want to give it up or reduce his hours yet he struggles and is on a cocktail of medication and i will be honest with you i have no idea how he does it. If we had to travel to and from birmingham very 6 weeks it would mean he would have to at least reduce his hours if not more.
Richard is absolutely right. Although my liver is not at that stage yet, i know I am not a candidate for a transplant due to my age and all my cardiac issues. Take one step at a time. It's all protocol what you're going through right now. Look at it as a blessing as Richard implied!!
I have just had that same first appointment with a Heptologist. I was wondering the same at the time, it was only yesterday so was a little nervous. Mr. Fergason explained the extent of my liver damage due to pbc and although is allowing us to have our paid for holiday in April, assures me it is time to be listed. The ultimate choice , however, is mine, but common sense says that if the liver is to be short lived, then I have to do something about it. He explained that due to Southmead Hospital doing extensive examinations and a huge report, my husband and I will be called in for a full day assessment, an overnight stay in on site accommodation and then a day meeting all the team and people that had been transplanted. We would get the results within a few days. I hope this helps, it is as far as we have got with the process.
thank you so much this answers a lot xx
Maddenone, living a distance from specialist centres makes things that much more challenging. However its much better to be seen by these specialists and if offered to continue with them. From my experience your care can get a bit confused if you are sometimes seeing specialist and other times seeing local Dr if they are in different authorities. Access to test results from local hospitals to specialist can be trying.
Anyway, sounds like he's being seen by the right Dr and I'm sure they'll try to accommodate you regarding future appointments however is felt will work best for all.
Good luck, best wishes
Hi gfdee, is it OK if I pm you?
Hi Maddenone,
First of all its good to have another member of the PSC club on here, although i'm sure its not a club anyone would really like to be a member of, lol.
There are two possibilities for the appointment you have been given.
1. Some of the country's leading experts in PSC are based in Birmingham. Whilst your own hepatologist locally is well clued up on all things liver, PSC may not be their particular specialism. They may therefore have felt it a good idea for your husband to be seen by those specialists to help assess and manage his disease.
2. And most likely, this is an appointment pre-transplant assessment to determine if now is actually the right time for your husband to go through the assessment for transplant. At my local hospital there is an arrangement where the consultants come up from Birmingham to see patients that fall in that category and are likely in the near future to need to be referred to Birmingham for assessment. Your own local hospital may not have that arrangement. Instead you just have that appointment at Birmingham. It may also be the case that because the specialists in your husband's disease are based in Birmingham, that its just easier for him to be seen by them there rather than by another consultant that may go to your local hospital. So there are a few possibilities.
I suspect from your post that the 2nd option here is the most likely. If your husband's liver function has deteriorated and symptoms have got worse. Or he's starting to show signs of decompensation then this seems the most logical answer. If not, then may be the first option is more realistic.
Assuming we are in scenario 2, and this is a pre-assessment type appointment. Then whether or not the decision is made to send your husband for assessment, you will probably continue to have appointments with the consultants at Birmingham, either shared with your local hospital or just at Birmingham. If he is eventually listed then you are likely to have any appointment at Birmingham at least every 6 weeks until he receives a transplant.
Hope that's helpful.
Hi maddenone
Welcome to this phenomal forum 😁 (that’s an alliteration apparently 😁
Richard and others have made some excellent points. I, like Richard, had my TP at Queen Elizabeth Hospital Birmingham. Fortunately my wife and I only had to travel from north of Derby to Birmingham, nevertheless it took most of a day up since we had to catch two or three trains each way and had to go early enough to ensure we didn’t miss an appointment.
Birmingham is a world renowned Liver Transplant Hospital. I hate to say this but I am amazed your husband is still able to work if he has “end stage” liver disease. No one ever told me my problems were end stage 😑 (but there were lots of things I was never told - but did I care - no, I didn’t because I knew I was a very very lucky man overall 😁👍. At some point (soon) I’m afraid your husband is going to have to leave work - it’s a fact if he is going to have a transplant. I left work 3 and a half years before I was lucky enought to be put on the transplant list. Post transplant - 4 months - I still cannot work. A liver transplant is life changng in more ways than one...
I was 3 years at Derby liver cliniic before being referred to the great QEHB. Had to go there frequently for “normal” liver clinics, then did an initial one day assessment, then a two day assessment - details as per Richard’s post. That took about 6 months (3 months of which was due to me having toundergo an extra test). Yes it is a long haul for some. On the other hand when I was in the hospital bed after the TP a young man 30 something was brought into my ward looking very yellow. He got worse over a very very few days and was then given a transplant without going through ANY of the normal assessment process because he was so seriously ill. So waiting and the process can and does vary between individuals!
Please just be happy, no, be ecstatic, that you are being referred to Birmingham- it’s worth it - undeniably so in my case 😁👍.
Good luck to you both.
Miles
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HI
I travelled from Northampton to Birmingham for 7 years, I felt it was worth the time and cost and a lot of effort when I was really ill and only being able to walk a very little way.
The Birmingham staff are some of the very best, and without them I would not be writing this today.
Post transplant was a visit a week for 6 weeks, by taxi!, but in my opinion worth it, Richard and Miles have put the points very well.
Good Luck for the future
Hi just to give you some comfort my hubby had his transplant at QE in July last year .... we actually live in Caerleon so you’ll know where we’re from ..... my husband 1st saw heptologist 7 years ago then shortly after he had varcies which he had to have banded several times, he had Nash and non alcoholic cirrhosis of the liver his health sadly deteriorated and he had to finish work 3 years ago, in August 2016 he got worse and had more bleeding then from the November he was in and out of hospital then he spent 3 months in hospital at RGH his liver was now decompensated and they asked for him to be assessed at QE ... he got sent there on 9th June and spent a week there we came home because at the multidisciplinary meeting his scan had to be referred they rang us on 22nd to say he’d be listed and on 26th June coordinators rang to say he was active on list .... it’s a roll coaster of a ride with your emotions, my husband was urgent on the list and he needed a DBD donor, we were so lucky to get the call 2am on the 4th obviously you go to the hospital and he had his op on 5th at 4.30am .... he’s now 6 months post and his livers doing great .... got a problem with his kidneys which might need a transplant but he had this before he was so ill his kidneys were damaged.... but he’s ok he’s doing amazing and it’s nothing we can’t deal with .... we break it down the journey in the sense that we think about once you get to the motorway it’s approx 40/50 minutes , because getting to Monmouth / Ross are the longest bit of the journey, it’s straight forward ..... also heads up if they give you a prescription you have to pay for it but you can claim it back from the NHS in Wales .... I can give you the adddress x good luck xx anything else you want to know just say .... although it’s long I have tried to keep it brief lol xx
Infact we’ve requested any other treatment with his kidneys be done at Birmingham because they are so efficient.... my hubby has just gone to 6weekly appointment after 4 months after weekly and 2 monthly appointments .... honestly the time you spend waiting to see the consultant in Newport you’ve already traveled up there xx
Great post Ked. Reflects a lot of our experiences. My TP was 27 August, at least 4 and a half years after troubles began.
Hope he’s continuing OK and his kidneys are sorted out.
Miles
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Thanks pilomilo glad to hear your doing so well, the difference after the op with my hubby was amazing and I hope your recovery is just as good , we just can’t speak highly enough of QE and as chell1704 has said accessing your medical records is brilliant you get to know your bloods and if their in a acceptable range and that you’ll get a call to change meds before they do x
Thx Ked I’m blurry fantastic thank you!
Also if your on FB a good group is the liver transplant support group Queen Elizabeth Hosptial Birmingham .... loads support on there xx
My hubbie was transplanted in QE in April last year. We are South Wales also. I echo all of the above. Dr Fergason was brilliant as are the whole transplant team. It will mean a whole day out for each appointment but you will feel in safe hands. My husband has signed up to My health to access his records on line. This helps our local appointment s as he logs on and his consultant can look at the blood tests etc.
Good luck
I was diagnosed with PSC in the 1990s. Had my transplant at Leeds in 2006 so cannot advise on your appointment but can say there is a good life after PSC and a transplant.
Fortunately I was working up until the day before I got the call and returned to work after 4 months off. I wasn't as sharp as I used to be but think i still did a good job (office work). There were a few hiccups immediately after the transplant but nothing that could not be sorted. There was also a major hiccup in 2013 and a few minor ones since but the liver has kept on working beautifully.
I was able to retire in 2013 when the hiccup was cleared and took on a couple of major renovation projects, but I have been putting off ripping out and renewing the bathroom in my son's house. I want an easier life now at nearly 65.
I am sure you will be in good hands at Birmingham. Don't try and return to work too early but do try and keep active. Good luck.
Hi, I'm julie, in mid Wales. I know Cambrian very well and see hepatologist in out patients, pontypool. I'm at end stage cirhossis and attend Birmingham. My first visit was with Dr holt and it was generally à meet and greet and a chat about my illness then after, bloods were taken. I'll be on my third visit on 30th to see dietician then after to see consultant. I still go to pontypool but my visits to Birmingham are leading to transplant eventually. I hope you get on okay, its a long way to travel. Best wishes x
hi just to let you all know as haven't posted in over a year husband had tp on 4th october worst and best time of my life we are getting on well and we soon got used to travelling to birmingham thank you for most of your replies and good luck to everyone on here for the future
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