No transplant: I have everything liver... - British Liver Trust

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No transplant

angse profile image

I have everything liver disease throws at you I have been told I need a corrective op on heart due to murmur told my gastroenterolgist and he said there is not one surgeon in UK that would do it because of liver, feel really low at present but will get over it hope you all are well as can be

11 Replies

So sorry angse, that must have been quite a blow.

Next step, is a second opinion on that diagnosis. The key here is that there is no surgeon he is aware of. I'm not sure if you'd need a liver or heart specialist hospital but I would approach a hospital like Kings directly and see if what they say. Until you try these type of hospitals the doors are by no means closed.

I've said a number of times on these forums that at first in my local hospital the consultant told me there was nothing they\he could do for me. I demanded a referral to kings and got a liver transplant and I couldn't be better now. I saw the original consultant about 6 months after the operation and he said he never expected to see me again.

grumps profile image
grumps in reply to RodeoJoe

You must get a second or indeed a third opinion we did and our son is now awaiting a transplant...good luvk and keep pushing

Hello Angse. I am so sorry to hear your latest news. It is as if they keep closing doors in your face . Everyone is entitled to a second opinion. Have you got a good GP who you can discuss it with?

Hi Angse, really sorry to hear that news however I wouldn't give up hope - have you actually seen a cardiologist about the heart issue? 

It isn't right that a gastroenterologist says no surgeon would touch you and I certainly wouldn't be stopping there. 

Am I right in thinking you are at Kings next month to see your hepatologist?  Ask them about the transplant assessment as you were going to.   Atassessment they will give you a full MOT including a thorough heart and lungs test and they would consult cardiac docs and anaesthetisits to see if this heart murmer is an issue which would affect progress to transplant or indeed can they do the heart surgery despite your liver illness.

Don't take this lying down Angse (I am sure you won't).  Keep pushing and don't give up - if this is only a gastro speaking - what do they know?

Love and best wishes winging their way.

Katie xxx

angse profile image
angse in reply to AyrshireK

Thanks Katie I will certainly ask my heptologist at kings, I have been so I'll due to low hemoglobin level dropped to 3.2 had 5 units of blood, apparently have to have blood for evermore if it keeps dropping so at present I had no fight in me still trying to get over what I went through with the hemoglobin, am going to fight back you are a godsend Katie x

i agree; 2nd 3rd 4th etc etc re opinion; im sure something can be done x

I am sorry, things could change though. I like your peaceful acceptance so things just might change fast to give you back your hope of a transplant. Good luck.

Hi, you've been very supportive of me over the last year and I'm so sorry to hear of your latest news.  I can't have my gall bladder out which is full of stones 'because of my liver'....if it's not one thing it's another.  Try and keep positive despite your difficulties and I'm thinking of you

best wishes

julie x

You do not say in your posting what has been diagnosed as being the actual cause for the heart murmer  or what kind of corrective treatment it is that you say you require?

Heart murmers are fairly common and evidently the underlying cause is more often than not due to  a heart valve that is not working effectively because it is not closing correctly or has become calcified etc. Corrective surgical intervention is not always necessary but in some cases a replacement valve is required.

I have acquired a little bit of knowledge about murmers and the causes based on my own experience in that about about 35 to 40 years ago a heart murmer was detected during one of my annual physical check ups and the cause was eventually diagnosed as mitral valve prolapse (sometimes known as mitral regurgitation) but no surgical  intervention was required. Since that time I have continued to live what many people would consider to be a very active and physical life style without any problems even though the murmer can still be detected during physical examinations. However throughout the period I have been required to have an echocardiogram every 5 years to ensure the regurgition has nor become worse because of further valve deterioration.

I understand that liver disease and particularly cirrhosis can often cause problems with the cardiac blood flow and ejection factor  so when I was diagnosed with autoimmune hepatitis and cirrhosis (decompensated) a few years ago I raised the matter of the mitral valve prolapse  with the liver doctors and specialist but they were not overly concernd so I now continue to live my life and very rarely think about the murmer or its underlying cause.  Clearly I  have been lucky not to have required any corrective treatment because sometimes a faulty heart valve does have to be replaced and if it is an aortic valve then I imagine that would require significant surgical corrective intervention.

It seems to me that you should try not to worry about it too much before you know the underlying  cause for your heart murmer and what corrective treatment,if any may be required . In my view before you can ascertain this it  will  require a referral, not to a hepatologist or gastroenterologist but to an experienced  Cardiologist who will probably require you to submit to an echocardiogram (quite different to the usual ecg that you may have had in a GP's surgery) to view and obtain images of the working heart

This will then enable him / her to determine the specific problem and then spell out to you what corrective treatment/intervention is required . Only then will it be possible to know if it is  something that is possible and right for you when taking into account other issues that may be applicable. Try not to worry about it too much before you have obtained the input of the Cardiologist.

Good luck

Regards 

As the others said get a second opinion soonest if you are not at one try and get to a liver transplant hospital, my wifes liver has failed and she is waiting on a transplant she has also been told she has a heart murmur but the doctor that found it at Addenbrooks  told her he was sure the murmur was caused by her bloods being too thin due to the liver problems and post transplant the murmur would be gone.

sometimes not always the like to scare you a bit to try and keep you in line.

Dave   

ok so my hubby is waiting to get on list.was told had heart murmer on assessment. Presume when we see consultant, he will be refused corrective surgery and transplant

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