Hi everyone. I hope you are all alright as can be! I am new to this forum and have a question regarding my potential transplant.
This is big news for me. However, I understand the serious implications of this going well because I want to stay put on this earth.
I have had a hideous week with news of my mum being rushed to hospital. She has advanced Dementia and they found a tumour...it is terminal. I have not taken the news well and double checked the appointment letter earlier: It is her Birthday!! I don't think I can make my appointment as I know I will be more emotional than I already am .
I want to cancel my appointment to give myself a better chance another day. Do you think they would be understanding?...I was quite anxious about it anyway but I know this will be magnified .
Any ideas would be appreciated. Thank you.
Mark
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Sorry to hear about your Mum, my hubby and I sadly lost hubbies Dad to dementia - supporting him was one of the contributory factors to hubbies liver disease and certainly the symptoms of anxiety/stress surrounding it masked hubbies liver symptoms before it was identified.I am sure the Royal Free will be understanding if you contact them a.s.a.p. and explain the circumstances especially if you tell them that this is possibly mum's last birthday and you wish to be with her.
Obviously you also want to be in the right frame of mind for transplant discussion as it plays a major role in whether you are listed or not but also remember the potential urgency of your situation. If doctors feel you absolutely need t/p assessment at this time then you must be pretty poorly so don't put off for too long - remember too that if listed it will impact on your life whilst you wait.
Hi Katie, thank you for your reply. It helps hearing from people who understand it. Liver disease and dementia or both horrors. I came out of hospital in February. Some things have improved : my ascites is under control and I am not malnutritioned. Varices is moderately bad and my my bloods are skew whiff!
I know the urgency of the appointment but morally and emotionally I can't miss possibly my mum's last birthday. I will phone them after the bank holiday in the hope that they can change it.
I am also living alone after my divorce and question if they would even consider putting me on the list.
I have come so far to be seen. My sobriety has been tested to the extreme but I owe it to myself and my son to be assessed and take it from there.
Can I ask you how being listed impacts your life while you wait.?
Being listed restricts the distance you can be from home - we already live 100 miles from our t/p centre and we weren't allowed to be more than an hour from home. If away from home overnight we had to notify co-ordinators. All about being contactable and available for ambulance transport. If ill with a cold or anything else you needed to contact them as it can impact on your being suitable for t/p at that time.
At the end of the day though, t/p is a life saving op so worth the wait - my hubby was actually delisted after 10 months because his bloods stabilized - taking him out of the criteria for listing.
Hi Katie, thanks for that information about being listed. That is such good news that your husband has been delisted. It seems your support has helped him get where he is today. Well done to both of you!
I do like hearing stories like your husband's. I need to hear that. People do continue life when the odds are against them. I feel this disease is so unpredictable and challenging to anyone.
Hi Mark, this must obviously be a very emotional time for you. Do you mind if I ask you a couple of personal questions, please?
Does your mother happen to live with you? And, is your poor mother compos mentis enough to know it’s her birthday soon?
I think in your case, the transplant team won’t be considering you for a transplant just yet, as you say you had your last alcohol drink in February. So, it’s still early days to be added to the waiting list. It's usually six months being alcohol-free even before you are considered, and this is normally written in stone. The fact that the transplant assessment panel want to meet with you could be an indication of a more serious aspect of your need to have a transplant.
When you go through and meet with the assessment panel, they will introduce themselves and tell you what their job is. You will then be given a series of tests to see if you are physically capable enough to endure a 5/6 hour operation. You will be assessed by a psychiatric doctor or nurse. They will be assessing your mental state and will need to be convinced that you are totally committed to a life of alcohol-free celibacy and that you don’t have any mental health issues or suicidal thoughts.
The state of your mother's condition will no doubt have an impact upon the psychological profile they’ll be building of you. There is always a much strong challenge when faced with an emotional situation to want to just reach for that bottle. So, there is a lot of temptation going on here to have a relapse during this awful time. However, this could be turned to your advantage, because the psychiatric team will see this as a positive commitment to stay off the alcohol if you can resist the temptation through these hard times. They’d see you as being a safe bet when it comes to accepting your suitability for a transplant.
The other thing the psychiatric team might do is to be able to offer you support within your local community just to get over the emotional strain you are under. They have their contacts and can get an immediate referral in your area, while it could take months normally to be seen by someone. These guys have long arms and can reach out to other support services that may be able to help you. It’s a case of, “It’s not what you know, but who you know”.
So, I would if at all possible try and keep this appointment. Under the circumstances, they could review your need for a transplant again in a further six months. But then your situation could deteriorate and your still not on the transplant waiting list. Get on the list, and wait for that phone to ring. Some people have waited for over two years before it rings, while others like me only waited three weeks.
Finally, I think you need to remain focused at this difficult time. Fill your life with positives. You sound like a positive man by your determination to want to live. Just ask yourself. “This is the problem, now what am I going to do to make it right?” This is a positive action so, fill your life with positives. “I can stay off the booze”. “I can get through this”. “I can be with my son”.
If I can be of any help, please feel free to send me a private message.
Hi Richard, thank you for your reply. You seem to have a great insight into the system and procedures. I however am learning the ropes!It has been a really tough year with my health and l was gaining strength to not give up. I stopped drinking a while before my admission then my liver Decompensated . So it will be 6 months sober for my appointment.
I have also given up smoking at the same time and I have never in my life eaten so healthy. My physical strength has improved because I was in a terrible state and skeletal. I now recognise myself in the mirror....which is handy!..
I guess my main concern is my emotional state. I have history of depression and anxiety and pray this doesn't go against me. I understand the journey I am on is tough but I have found an inner strength to give myself the best chance.
The assessment team are aware of my medical history regarding depression, etc.
Regarding my mum; she doesn't live with me and she wouldn't know it was her Birthday. To be honest, from the news I got yesterday; She hasn't got long!
I am intermittently positive and determined. I have however been hugely effected by my news of my mum. Due to covid, I can't see her.
I want to thank you for your supportive message and guidance regarding the implant. I want this assessment and don't want to wait long for the next offer. It may be too late.
Changing appointments at the RF can be tricky. You could try to do it on line and this often works. However if what is available on line would delay the appointment too much, try giving the hepatology department a call.
Hello,
Such an emotional time for you in so many ways.
It might be worth trying to get hold of the liver transplant coordinators at your Transplant centre so that you can explain the situation to them. Switchboard would be able to put you through. The coordinators are likely to know how long you might have to wait for another assessment date if you do decide to cancel the one you have got.
ps Living on your own is not a contra indication to transplant .
Hi, hope you are coping at this difficult time!! No advice just how it's been for me! Decompensated alcoholic liver cirrhosis, diagnosed 2019, stopped drinking immediately. Got put on transplant list February 2020! 3 calls to go in ,all unviable!! Now it appears all bloods are good and put on hold from list
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