Hallo! (Haemochromatosis and Transplant - QE, Birmingham)

Hallo,

I have haemochromatosis which was diagnosed about four and a half years ago. I have had increasing problems with my liver and it has culminated in cirrhosis and a whole heap of problems related to that. My doctor is referring me for assessment for a liver transplant and I am hoping to go to the Birmingham unit. I actually live in Wales but the Birmingham unit would probably be the closest to me.

I have high-functioning autism and do not cope well with sudden things and so this whole situation (the transplant referral) is still freaking me out a LOT! I am someone who really only functions well with definite things and, of course, none of this is definite (in as much as they don't say, you will have your surgery on such and such a date and so on).

I have not yet been to Birmingham and am concerned about visiting a new environment but I may possibly go for basic hospital visit before the assessment in order that I can work out how to facilitate my needs, my autistic needs, during the assessment.

I still don't fully understand why, if I have a transplant, then the new liver doesn't just develop the same problems which I already have as the haemochromatosis isn't going to go away but hopefully there may be someone else on the forum who has the condition and perhaps has been through this process.

Please forgive me if I am sounding utterly ridiculous and dim! This is all new to me and I am currently still in something of a panic about it all

Anyway, I expect I will calm down! Hallo to everyone and thank you for letting me be a part of your forum. :-)

Last edited by

14 Replies

oldestnewest
  • Autism or not be assured that news like that will freak anyone out. The location of the hospital isn't really of any importance I can only imagine that any of the Liver Transplant Hospitals operate in a similar fashion. Perhaps a visit before the assessment will set your mind at rest a bit but I'm not sure how practical that is? Perhaps with your circumstances you could arrange this? One thing to note about treatment and hospitals is there is a way things are done, my experience has been that deviations from routine can cause confusion.

    I would suggest you talk about this to the consultant who is / has referred you to Birmingham and see what can be arranged.

    At the transplant assessment you will be given lots of opportunities to ask questions, like they one you raised above "then the new liver doesn't just develop the same problems..."

    I've been there done it and yes it freaked the hell out of me too, I would be more concerned if it didn't. Things happened quite fast for me and it was only a matter of weeks before I ended up being referred for assessment. When I arrived my partner had to fill out the standard documents as my hands were shaking so bad due to crazy anxiety, sleepless nights and general unwellness.

    But I came out the other side and I'm doing well. Once you're in hospital they will be taking care of you. It's probably important to let staff know you have autism though, I'm sure they will be informed but sometimes nurses etc aren't updated.

    Good luck!

  • so glad to hear that you are doing well. that is great news. god bless you and keep you well. love grace xo❤️

  • Thanks Grace, very kind of you :)

  • Hello clementi11, I have a couple of very good friends with aspergers syndrome so have a little understanding of how the definites in life are very important to you and can well understand that being added to the transplant list might cause you all sorts of anxieties over managing life under a very uncertain wait.

    You will not be unique in this situation so hopefully the team at Birmingham have some experience in supporting those on the autistic spectrum go through the process. All transplant teams have Social Workers and Psychiastrists involved in the assessment and they are there to support you whilst you wait.

    As regards Haemocromatosis post transplant - I am assuming yours has gone undetected until it has already caused your cirrhosis and other problems.

    When detected early enough there are treatments for this condition with either regular scheduled phlebotomy procedures (where about 500ml of iron rich blood is taken from you thereby rebalancing your bodies iron levels) and/or medication to help remove iron from your blood and these would halt or slow down any liver damage. I would imagine that knowing you have this condition they would start you on some sort of treatment regime for it after you transplant to prevent it from appearing again and damaging your 'new' liver.

    There is a chap on here who had a transplant due to haemocromatosis and he may well jump onto this thread if he spots it.

    Wishing you all the very best, Katie xx

  • Yes, Haemocromatosis, otherwise known as the 'Celtic Curse'. I was diagnosed with this condition when they examined my diseased liver, post transplant. I had the bloods taken for the genetic test taken over 4 months ago and am still awaiting the results.

    I asked the same question regarding my new liver also being damaged and the liver surgeon stated that once the old liver was replaced, I would no longer have Haemocromatosis. Personally, I doubt this and would like to hear an answer from a genetic counsellor. It's probably not relevant though as in my case, the iron overload took over 50 years for symptoms to appear, by my reckoning, I will be 110 by the time it will re-manifest. Of course I'm not an expert on this and my reasoning may be flawed. While I'm waiting though my sons are naturally anxious about their own future health.

    Unfortunately I can't be any help as regards to your autism, the whole thing must be so frightening to you.

    Mike

  • Thank you for all these replies!

    Yes Red1954, I too would like to hear from a genetic person. I suspect the answer is that, because it can take so long to develop (mine was post-menopausal (early menopause) which meant that the iron dumps into my liver became too much to handle and my liver became cirrhotic quite speedily but there was pre-existing damage for sure. I guess that they would simply remove blood post-transplant (as they have also done pre-transplant but the liver was too damaged) which may prevent any future build-up but I really would like to hear a definitive answer. I think this is what Ayrshire was sugesting and I think he or she is probably right.

    I also wanted to thank you Katie for the understanding regarding the autism as, so often, people truly don't understand how problematical it can be. I have severe sensory processing disorder (neurological condition related to autism) which means that certain colours, smells, lights etc can quite literally make me vomit as I am unable to process them neurologically and, in fact, this is really why my haemochromatosis was so advanced by the time they finally diagnosed it because it had taken me two years to finally managed to attend a hospital or medical appointment without problems - seriously, no joke, for two years they were unable to accommodate my sensory needs! So, yes, it meant that my liver was much more damaged than it would have been had I been able to attend an appointment when I first became ill. I was admitted as an emergency a few times but found I could not stay due to the overriding autism problems. Hard to explain really as it sounds ridiculous but there is not a lot I can do about the way I am!

    Anyway, I obviously cannot have this situation occur for liver transplantation and so I will visit QE to look at it and then, if it looks unsuitable, it is possiblle that one of the two London options may be better for sensory needs. The routine is one thing, but the environment itself is probably more difficult for me!

    I am also concerned about this family and next of kin thing as my family live in the US and I don't really have a next of kin over here. I am a dual-national. And so I am not sure if this would just preclude me from a transplant as the info I have looked at suggests that I would need to bring these people with me to an assessment and I cannot do that.

    I have also contacted the QE PALS team and they seem very helpful and willing to try to assist and so it seems that they are certainly very keen to try to make things work which is good news.

    Anyway, now I am babblinig, I apologize, but I really am very grateful to all of you for taking the time to reply, thank you so much. :-)

  • Hi grace

    My husband is about to hopefully be added to the transplant list due to cirrohosis being caused by undetected haemachromotosis

    For the past year he has been having venous sections as described by Katie -his iron level after 12months of this is 500 so he probably will be having he blood removal until November time

    I would love to knowing a new liver would stop him having haemachromotosis as maybe his aching joints will disappear

    I wish you all the best on your journey 😀😀

  • Hi, I visit this site as my OH has a diagnosis of cirrhosis , however, I was diagnosed with hereditary heamachromotosis in 2012. Luckily it was diagnosed before any damage to my liver had occurred. I am monitored by the haematology dept at the local general , and I have venesection to remove a pint of blood usually now every three months . This keeps the ferritin situation levels low enough to prevent organ damage .

    Therefore , I believe the answer to your question about damaging a donated liver will be that providing you have regular venesection s the serum ferritin can be maintained at a level which will prevent iron deposits occurring .

    Hope that helps and wish you well with your transplant journey .

  • Hi, The QE in Birmingham is a wonderful place, I go there a couple of times every month and have never had a problem there. I agree it's a shock to the the system but after the initial shock you will start to plan things to help yourself. Try not to stress yourself, don't look for problems that may not be there, overcome problems as they happen. Message me if you have any concerns about the hospital I may be abel to help ( I live in Birmingham ). Otherwise there is a wealth of experience on here and a lot of good folk. Take care.

  • Clementi11,from reading about your family,does this mean you have no one to go with you for support ? I hope you don't have to go alone. The reason I ask is because my partner has aspergers and it terrified of social situations or anywhere busy. If he needs to be in these situations I go with him or find a suitable friend to go with him,so I know how hard it must be for you. Good luck with everything,you will get lots of support posting on here. If I can be any help,let me know. X

  • I too was diagnosed with genetic haemochromatosis (GH) - in my case, back in 2005. I had the usual treatment to reduce iron levels but still went on to develop cirrhosis and then cancer. I had a transplant in 2011. Your question about the transplant "curing" your GH is an interesting one and something that has puzzled me since I was told that I was now free of the condition. What I take this to mean, however, is that while the genetic precondition still exists, the iron overload is no longer a feature because of a) phlebotomy and b) a new liver that does not have the damage due to prior overload. As you say, it took you up to 50 years to accumulate a dangerous amount of iron.

    The other issues are a challenge and I hope you can find support to help you through the assessment stages. My experience of the transplant team (in my case St James's in Leeds) was that they were incredibly supportive and helpful but occasionally preoccupied because of pressures of patients etc. The support of family and friends is very valuable but not a requirement of assessment. This site is very useful for some general information and a bit of emotional support so a good place to come.

    You might find the Haemochomatosis Society also a helpful resource - they can be accessed at haemochromatosis.org.uk

    Best wishes, Mike

  • Cheers Mike8702, it was yourself I was thinking of when I heard clemeti11's predicament. I hoped you'd jump in with your experiences of GH pre & post transplant.

    Hope you are doing ok.

    Katie x

  • Hi Katie, Yes, still here and doing well. Pleased to see you still making your insightful and helpful contributions. It is a great resource and entirely dependent on participants.

    Best wishes to you and yours

    Mike

  • I live in sthelens and go queen Elizbeth I had 2 liver transplant X. Hope all goes well for you. It's a really good hospital

You may also like...