Hello everyone hope you all had good Xmas, and Happy New Year to all
Was wondering where you have to be to be on transplant list, I have cirrohiss with portal hypertension, had massive bleed in 2013 enlarged liver and spleen, ultrasound has now p8cked up fluid around the liver and pelvic area, ankles also slightly swollen, have awful problems with low iron levels for me that's the worst symptom as literally knocked off my feet, problem being I am 63 so is age against me grateful for your feedback. Annette !!!
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angse
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I would think most people do better with their own liver however poor its function as for many a transplant comes with its own long term issues as well as a chance of better health.
You will hear stories of people here who have had an emergency transplant at the short notice due to unexplained liver failure, alongside those who have got slowly sicker and sicker.
There are ways of working out your MELD or UKELD score, hopefully someone will come along and explain.
There are many many more people on the waiting list than there are donor livers. Also a hospital doctor I heard recently said due to better road safety the donor livers are now less likely to come from healthy young men with no disease and more likely to come from older people and bring with them problems of underlying disease and age.
Good luck with whatever outcome /decision the doctors make. As you know I am in a pretty similar position. I am 65, but that is much the same age, and similar symptoms. I saw them at Kings just before Christmas but am waiting for my copy of the letter to the GP. It often differs from what they told me on the day! Happy New Year to you.
Thanks gamesmaker happy new year to you also I to went to kings on 21st Dec I to am awaiting copy of letter I didn't discuss transplant though to co cerned about breathing and then bei g told had f!his around !over and pelvic area
Meant to say fluid and liver area I hope things go well for you let me know. Annette
Hello Annette. It is so frustrating when you go for a check up! I always feel that I have forgotten to ask things I really wanted answers to. And the rush from the ultrasound department to the liver out patients always leaves me lost for words (hopefully the walk will be shorter when they move to the new department). I spent my whole working career as a nurse, so these people should not leave me wanting for words - but it is very different when you are on 'the other side'! My husband always went with me to Kings, but he passed away 18 months ago, so I have to rely on my own memory!! They have just started me on Lactulose - gives me some very antisocial effects!! Apparently it is to flush out the toxins. Are you on Lactulose? Keep in touch! ... and good luck when your letter arrives. (My OPD was 16th December - I will let you know when I hear from them).
Hello games maker know what you mean always forgetting to ask what I really want to know, hopefully it will be a shorter walk when department moves, no not on lactolouse, like me my husband died two years ago, what I do is write things down and my hepto!ogist is really patient and allows me to go through everything I want to know, but did not make list in December I will in future, let me know how all goes for you. Annette !!!
You are under Kings arn't you? Next time you are in ask whether there is a likeliehood that you may get referred for a transplant assessment - some of your symptoms appear to be worsening with the arrival of fluid build up too.
They never quite tell you how 'ill' you have to be to be considered. My hubby got assessed and listed as you may recall but was actually delisted after 10 months following an improvement in his blood results which actually took him outwith the criteria for transplant.
The actual 'scoring' system is the UKELD scale and the minimum score is 49 in order to be listed. It is a mathematical equation based on the following.
The UKELD score is calculated from the patient's INR, serum creatinine, serum bilirubin and serum sodium, according to the formula.
(5.395 x ln INR) + (1.485 x ln creatinine) + (3.13 x ln bilirubin) - (81.565 x ln Na) + 435
If you can get hold of your actual latest blood results for INR, Serum creatinine, Serum Bilirubin and Serum Sodium you could do the sum for yourself but I would assume since you are at Kings they are monitoring this each time you go.
Your age should not yet be an issue for transplant, providing your other health outwith the liver condition are ok. It comes into play if you have other age related illnesses such as weaknesses in heart and/or lungs. During the transplant assessment these would be examined. It is all about whether the risk of transplant outweighs the potential benefits it may give you, there are no guarantees with transplant as we see quite often on this site and although we all dream of a 'happy ever after' with a new liver sometimes it doesn't work out that way.
Hopefully your medical team are on the ball and you get the treatment you need.
Thanks Katie happy new year to you and your husband, yes am going to do that when I see heptologist at kings in April, they now want to see me every 3 months instead of 6 because they put me on water pills frusemide 1 daily and Spironolactone 1 daily and said I have to be monitored, he did say why but totally forgot so much to take in, truth is when I'm well I really have energy no fatigue can walk at normal pace, its when the breathing goes downhill that I'm really unwell haemoglobin goes down to 5.1 and can barely move around, its as if there is nothing g wrong with me now that breathing back to normal, the fluid buildup not that bad not noticeable to the eye, I have spoken to people who had it severley had to be drained as looked 9 months pregnant, they have gone on to no transplant and no more f!uid, that is what I'm hoping for. Thanks so much for your advice means a lot. Annette how is your husband doing. Annette
Just ticking along Annette, really fatigued today and in bed by 7.30pm. Had a decent Christmas. We go every 12 weeks to TP clinic now, just back to the pre-listing state rather than every 5 weeks. No fluid, no jaundice, bits of forgetfulness and confusion and generally slower at doing anything from getting dressed to just moving about. We are at our local gastro clinic this Wednesday (6th) and back at Edinburgh during the first week in February.
Ticking along as I say. Hope you get some progress in April.
Glad to hear things not to bad for you both at present like me I'm as right as rain feel really well, I'm sure people think I'm telling lies, one few weeks I look as if I'm leaving this earth few weeks later I'm like everyone else walking around doing things its incredible, let me know how things go Annette !!!
My haemoglobin is measured in g/L so "normal" for me is between 115-165 g/L. So I had to google normal levels to see what your 5.1 meant and most sources say when you go below 6 you need a blood transfusion to get the number of red blood cells back up to a level where enough oxygen is being transported round your body to counteract this breathlessness and weakness. At this low level your heart is having to pump extra hard to get the blood and oxygen round which is why your doc wants you resting as your heart has enough to do without you adding moving around into its workload. Have transfusions ever been discussed?
Hi bolly yes have had transfusions, am okay for about 2 months then breathlessness and weakness back again gp let's me suffer for about 2 months or over until I tell him enough is enough and to do something, my hemothogist has already wrote to him and told him if it keeps dropping to that level have to be sent for transfusion, so if signs come back in at his office immediately thanks for your advice really helpful. Annette
Hi Annette
Your age is not against you at all , when I had mine there were people 65 and 69 in my ward. So don't worry about that !! Good luck Annette
Hello Angse. I said I would let you know when I got my GP copy letter from Kings - I saw them in out patients on 16 December and I got my copy GP letter yesterday. Have you received yours yet from your appointment just before Christmas? Mine informed me that I now have HE. I was not surprised in that they had started me on Lactulose..... but why did they not mention the new additional diagnosis in the clinic! Did they think I would delay the clinic by asking too many questions?
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