Liver Transplant - Survivors Guilt and Depression

Back in 2018, University of Cambridge Professor Edward Bullmore published his book, “The Inflamed Mind” a radical new approach into the understanding of depression. This concept may sound a little deep for some people. But please try and bear with me. What Prof Edward has discovered is a link between depression and our body’s immune system. This then can have serious consequences for those people who may have endure some form of physical injury, who then go on to suffer with depression.

This is the first major breakthrough in the understand of depression within the past 40-50 years. Professor Bullmore is also Vice-President of Experimental Medicine at GlaxoSmithKline in London, so it is hoped that in the coming years a different range of medication will become available in the treatment of depression.

To try and understand this concept further, Professor Bullmore has put together a rather nice, easy to follow video which some may find interesting: youtube.com/watch?v=iw7b0-y...(Not working as expected?)

So, What about the Liver Transplant then?

The next thing you realise is that it’s all over, the porter is wheeling you on a trolley from the ICU onto the liver transplant ward. You begin to take in where you are and then WHAM, the enormity and the reality of your situation hits you.

You’ve now been reborn. You’d think a person would be elated and full of happiness and joy. However, for some, there is a deep feeling of sadness. They start to think about their donor. who was this person who has now saved their life? This totally unselfish gift from a total stranger, becomes an over whelming pressure. This can be made even worse, as in my case. I realised that I really didn’t deserve this gift, I felt I wasn’t worthy. I suffered with horrendous guilt.

Most of you will know that there is a transplant technique that can be used on young children who are in need of a liver transplant. They do what is known as a split liver donation. This is where one liver can be split in two, and save the lives of two small children. I became very aware of this and felt so sad, I blamed myself and cried in my hospital bed for two days. It took me over eight months to come to terms with this.

Once a person walks out of those hospital ward doors they are very much on their own. Oh, they may have a family member to help them when they get home, but they can only help with the physical person, but not the emotion wreck that hides behind a mask inside. Nearly three years on, I have only recently learnt of the existence of these little-known mental conditions. It would appear that a post-transplant person can suffer with a form or PTSD, and that there is now a condition called Survivors Guilt this makes for an interesting read: verywellhealth.com/coping-a...

I really do believe that at the time of having a liver transplant, the immune system must go into overdrive at that very first cut of the surgeon’s scalpel, and that the immune system starts to dump cytokines all over the body. These then travel across the "Brain Blood Barrier" and cause a change in a person’s mood. Even in post-transplant, the body’s immune system is turn right down so as to prevent organ rejection. This in its self could very well cause the immune system to respond in producing more cytokines, which in turn bring about a feeling of melancholia. I have written to Professor Bullmore about this possible scenario, which at the time am still awaiting a reply.

I also believe that if you understand the possible reasoning behind a situation, it makes it much more acceptable to live with.

I hope some of you find this of interest.

[TT-2018]

Richard,

Thank you for your interesting and helpful post. You engage in the mental and physical struggles, through a cirrhosis diagnosis involving being told that the option is a transplant. It took me three months to absorb what I was being told.

After waiting for the call, the day arrives and you are taken to the operation.

After the transplant and ICU, I faced a new psychological struggle, dealing with the enormity of the illness and situation around it.

The treatment and care you receive is world class and I will be eternally grateful to the NHS.

But afterwards you are fully supported with the physical aspect of receiving the donor organ, a new psychological struggle begins.

Mark.

[chugalong]

Hi, very interesting, understand totally where you are at. Thanks for the info

[davianne]

Hi Richard, Although I'm never likely to be a transplant recipient, I nevertheless, found your post very interesting. Depression is something many of us here have to fight, especially after diagnosis, me included, but as your last statement says, I have now come to terms with my situation, and, as a result, am in a much happier place.

Thanks Richard for another great post.

David

[Hidden]

Another very interesting share, thank you.

[Hidden]

Do you think you suffer from this form of PTSD then Richard?

Serious question. I mean of course you don’t have to answer since it is a very personal question but it is just a subject I would never have thought of. Now I’m wondering if I should be depressed?

But I don’t at all -I feel completely the opposite. I am totally elated. I realise I am fortunate in this but hope the majority of TPers feel the same? (I do know of one who is a bit down now though who has recently posted on the forum). Notwithstanding that of course we are forever thankful to our donors and their families.

Miles

[jojokarak in reply to Hidden]

My depression if that what it was didn't hit me until a year and a bit post.... Its survivors guilt but I went to see my gp and got referred to a psychologist who I seen within six weeks of seeing my gp but it's like anything not everyone is going to experience the same thing 😉

I think people who have had through alcohol suffer with it a lot more my psychologist said I had due to being poorly for so long and nearly dying on numerous occasions and then someone does die and boom save my life...

I just think its dangerous posting this information when no one is a registered counsellor or psychologist this is what doctors are for referrals but as usual blt never point out that some sharing of certain information is dangerous apart from blood results 😊

[Hidden in reply to jojokarak]

I was also trying to say it hadn’t entered my head until I read this post. Not said very well I guess.

Miles

[Hidden in reply to Hidden]

No, l don't suffer from PTSD Miles, thanks.

[Hidden in reply to Hidden]

Ah OK thanks.

[Hidden in reply to Hidden]

Really? This site is about sharing information and hopefully helping others to understand. A Liver Transplant is a very emotional and physical strain upon the whole body. Because of the invasive procedure at the time of a transplant the over stimulated immune system will release of high amounts of cytokines will cause a possible change in mood. This is a new theory and one of which will still take a further three to four years to filter down and become normal psychiatric understanding.

I posted this up because some people are interested in this, and others may want to try and understand why they are feeling so depressed and low post transplant. Not all people are affected. At some of the support groups I have attend there is a common misconception that all people with depression are all the same. I try to get them the look at the cause and not just accept the symptom.

I am presently setting up a new local venture involving, "Changes" mental health wellbeing and the British Liver Trust. This is going to be a support group for those on the liver disease journey and for those post-transplant. This hopefully with be able to offer support for both the patients and carers alike, in a friendly Cafe type environment. I have put together a business plan and this is now presently going through the startup grant phase. Still very much early days, but it's a start. There is nothing like this in the whole of the west midlands so this is very much a first.

If this venture proves successful, then it is hope to start up a similar operation in Bristol.

As to why I posted this up, is because I care, and I want to make a difference.

[Hidden in reply to Hidden]

Umm to what are you replying Richard? Are you reading something into my response? I don’t see why you have made this comment? Or was it to someone else and hence made in error. I presume so.

[TSManning in reply to Hidden]

Hi Richard,

I recently joined this site to educate myself on liver disease to help care for a family member. I have benefited greatly from the posts you have put on here. I want to add to this specific thread that it's been found the depression can occur after any surgery, even when the outcome is positive and you leave feeling reborn. When you think of a transplant in the perspective you have given above, it would clearly magnify that feeling as there are so many emotions coming into play. Not too much substance to my response, but wanted to let you know I appreciate your point of view. That's the best part of life that we all view things from different perspectives and can collaborate together.

[Poobear69 in reply to Hidden]

Richard, thanks for sharing and despite what other feel or think I'm happy that you did.

[Kate50]

Hi Richard64, I think this is a very interesting post raising a lot of interesting questions, for me personally I totally identify with what you are saying. I think mental health is still treated like a dirty secret sometimes and the way to overcome this is by people talking about it in the same way as we talk about other medical health issues, also when I read posts like this I think it helps people like me to know they are not alone in their feelings, so I thank you for having the courage to post such an important subject, take care 🌸

[AmericanDemocrat]

This is an utterly fascinating and helpful post, Richard. I appreciate that you are not offering medical advice, but are sharing information about mental health - a topic which is in dire need of more practitioners ... more research and funding ... and, simply, more open discussion. It is so difficult to suffer when one thinks one is alone. Your post gives support to those who have a difficult time post-transplant. Not everyone is affected, of course, but for those who are, bringing the topic out of the darkness and into the light is crucial. And finding new ways to approach the problem (such as discovering a possible link to inflammation and the immune system), gives hope to someday finding better treatments and/or even a cure. By the way, I shared your information with my psychiatrist here in the U.S. and he stated that inflammation and immune system connections to depression are being strongly pursued by U.S. researchers, as well. Here’s hoping for better outcomes for patients in the future. Thank you again for your post. 🌺

[Hidden]

Thank you all for your comments. The human mind, I think everyone will agree is a most complex thing.

[Bootandall]

I have cirrhosis, compensated, no transplant (yet) , but I do have PTSD and depression.

PTSD is a little different, the nature of it is that the stressor that causes it is highly unpredictable, for example, fear experienced in battle, or during a violent crime, or even the volatile nature of child abuse. The feelings can be described as, and are related to, panic disorder. I would think it is not usually related to scheduled surgery. Maybe in the sense that the transplant procedure, by nature, is unpredictable as to when it happens, it could be a trigger for this type of pre-existing condition? Just curious, if anyone feels brave enough to discuss their own experience. Thank you.

[Hidden in reply to Bootandall]

That’s a very good comment Boot. I sincerely hope you have not experienced any of your example causes - but please don’t answer this because it is too personal. Just my expression of feelings to your condition.

Miles

[Bootandall]

Thanks Miles. I was just wondering how it may or may not apply.