I have signed my liver away!

Well…kind of…
Once somebody is placed on the liver transplant waiting list, an appointment is made for them to meet with a transplant surgeon who will explain the surgery in detail and ask the patient to sign a consent form agreeing to go ahead with the operation. They like to do this way ahead of the actual transplant taking place because when a suitable organ becomes available, the patient is called and asked to get to the hospital within a certain amount of time or an ambulance will collect them as soon as possible and take them to the hospital so it’s all pretty hectic and obviously the patient will probably be very apprehensive about what is about to happen. It’s much easier to get the forms signed ahead of time to prevent the added stress of this happening at the time of the transplant.

Last Tuesday I attended my consent appointment. We headed down to Derriford where I met with a transplant surgeon and my fairy godmother (aka transplant coordinator Katie)! The surgeon explained the transplant process in detail, going through the main risks and the chances of them happening. I was already aware of most of this information because I heard it at the transplant education session I attended at King’s during my assessment but this time it was good to hear it in perspective of my own condition as I was made aware of how my PSC could affect the surgery and the overall outcome of the transplant . It was a lot more personal this time, the fact that it was a one on one appointment (rather than a group session like the education session was) meant that my mum, dad and I had a chance to ask any questions. It was especially good for my parents because they will be the ones that will be aware of what’s going on at the time of my transplant and will unfortunately have to deal with any complications that may arise, they don’t have the luxury of being knocked out like I do!
As well as the details of the surgery, recovery was also explained to us. Things such as how long I could be in intensive care, when I could expect to be moved onto the ward, what kind of tests are carried out during my recovery and so on. Again, we were told what could go wrong and what would happen in those circumstances but we were also told to expect some glitches afterwards and that these glitches aren’t always reason to panic.
Once everything was covered I was asked to sign the big yellow form if I still wanted to go ahead…OF COURSE I DID! I think I snatched the pen out of the surgeons hands and said YES quicker than the wink of an eye! I signed away and suddenly it all seemed very real (as if it didn’t already).

So that was the nitty gritty details of the surgery explained, understood and consented to. Next we went through the different types of liver transplant and I signed and agreed to the ones I was willing and able to have. Yeah, that’s right…there’s more than one type of liver transplant! Over the years, the amount of people needing a liver transplant has increased significantly but the amount of donors available has not. This means that different approaches have had to be developed by transplant surgeons so that more people can benefit from transplants.  Not everyone is suitable for all types, it depends on a number of different things including the type of liver disease, the patients size and weight amongst other factors.

consent

A little bit of information about the different types of liver transplant:

Split Liver Transplantation – This is when a donor organ is split into two parts and transplanted into two patients. Usually, an adult receives 65-70% of the liver and a child will receive 23-30% of the liver. Only the healthiest, best quality livers are split which means the recipient receives really good quality liver tissue. The liver begins to regenerate itself immediately and within about 8 weeks, the liver will be completely regenerated. Really clever stuff! This technique can shorten the waiting time for someone on the list however, some of the risks that can occur after any liver transplant are slightly increased with this type of transplant. These risks include bleeding or leakage of bile from the cut surface of the liver and primary non function, basically meaning the liver will not function.

Non Heart Beating Cadaveric Donors – The most common source of organs is from heart beating donors. This is someone who has been declared brain stem dead and whose heart is still beating at the time they are pronounced dead. This means that the liver is still receiving oxygenated blood therefore preventing damage occurring to the organ. A non heart beating donor means that the organ has come from a donor who has been pronounced dead after their heart has stopped beating. Once the heart has stopped beating a period of time is allowed to confirm death and the organs are then removed. This means that there is a period of time when some damage can occur to the organs because they have not been receiving oxygenated blood. This can have an adverse effect on the liver function after it’s been transplanted into the recipient. However the liver can tolerate a short period of reduced blood supply and still function normally after transplantation. Obviously with this in mind it is clear to see that this type of transplant comes with much higher risks. Not only can the liver be damaged before transplantation from the lack of blood supply but there is also an increased risk of biliary complications and liver failure after the surgery.

Living Donor Transplantation – This is where part of the liver is removed from a living donor in order to transplant into a patient on the waiting list. The donor must be a blood relative, spouse or friend who shares a compatible blood group with the patient, they must be between 18 and 60 years old and be in good general health and of a suitable size. They will have to go through lots of tests and assessments such as scans and blood tests and will meet with a surgeon, psychiatrist etc before they are deemed a suitable donor. This kind of transplant is almost the same as receiving a split liver transplant in terms of outcome but it also comes with the added benefit of the transplant team being able to plan the procedure which means significantly reducing the waiting time for the recipient.

Before this consent appointment, I was under the impression that I was only able to have a whole liver from a heart beating donor however, after talking to the surgeon and Katie it seems I’m suitable for split liver transplant and also a living donor transplant! I’m not suitable to receive a liver from a non heart beating donor as it would carry too many risks for me. So I have consented to receive a split liver and obviously a full orthotopic liver transplant. I’m not ruling out the living donor option but I have decided that I only want to consider this option if my condition deteriorates to the point where I am extremely ill and unable to survive much longer without a transplant. If I do want to consider this as a future option I would have to start the process now. The transplant team would want to find a suitable living donor for me as soon as possible, they wouldn’t want to leave it until my condition worsened and I was at the point of needing a transplant fairly soon. This is because they need allow time to carry out the necessary tests and assessments on potential donors in order to find the right match for me, then if it did get to that critical point I would have a willing and suitable donor ready to go! I need to spend the next couple of weeks thinking about if this is something I actually want to seriously consider because if I do, I have to start rallying up potential donors…how do I even do that?! Do I just go round to all my same-sized friends and family members and be like ‘hey, what blood group are you? Do you want to be a pal and give me 60% of your liver if I should need it? Come and have all these tests done, it’ll be fun!’
It’s a massive decision and one I wish I didn’t even have to think about because it means potentially putting somebody else through the risks of the surgery. I hope I will never actually come to the point of needing it to happen and that I can just remain healthy enough to continue waiting on the list but I have to be realistic and realise that there is a chance that it might come to that point, so I do need to think about it long and hard. Anyone who knows me will know how good I am at making decisions (and that’s not good at all) and this one is a bit more difficult than deciding what to have for dinner.

Anyway, that’s it for now. Nothing much has changed, I’m still here, waiting for that call, remaining positive and getting on with my life as best as I can.
If you’re still not registered as an organ donor, or if you want to know more about organ donation visit the NHS Organ Donation website where you can do both… http://www.organdonation.nhs.uk/
If you are registered please make sure you have talked to your family and let them know your decision. I know it’s not something people like to think or talk about but your family are the ones who will decide of your organs get donated or not, even if you are registered they can decide against it if they are unsure it’s what you wanted.

organ-donation-full-infographicThanks for reading x

 

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6 thoughts on “I have signed my liver away!

  1. Reblogged this on caronblocks and commented:
    “Do I just go round to all my same-sized friends and family members and be like ‘hey, what blood group are you? Do you want to be a pal and give me 60% of your liver if I should need it? Come and have all these tests done, it’ll be fun!’”

    I really like this blog. It’s nice not to be the only one dealing with all the awkwardness of PSC sometimes.

  2. Heyyy, me again 🙂

    Sorry I haven’t replied sooner – just spent another week in hospital due to cholangitis (that’s four week-long admissions since mid December, so now have a picc line again as rotating oral antibiotics don’t seem to be keeping it at bay…so doing IVs at home. Fun times…!)

    The good news about having so much time on my hands after so many admissions is that I’ve got my blog up and running – you can find it at http://cressica.wordpress.com. It’s a little out of date due to all that’s been going in, but have started blogging the backstory to how I’ve got here (may have to chat tips on keeping it as easy as poss to write with you at some point, otherwise I may end up writing the equivalent of heavy dictionary in electronic form!)

    Really good news to see your consent form signed! Hopefully that’s another step in the right direction for you and things stay healthy (or as healthy as is possible!) until the phone rings. I had my transplant review meeting last week and they think I may need further surgery to keep the cholangitis at bay for the time being, which if that is the case should hopefully leave me healthy enough to stay off the list for a little while longer…so just waiting for tests to decide on that verdict! In the meantime I may have to get my sewing machine out and keep myself craftily busy 🙂 oh how I miss work…

    Will keep checking back here to see how you’re getting on, lots of love and luck

    Jess
    x

  3. Hi, I’m sorry I haven’t written/posted on your site in awhile. I’ve been recovering from my surgery and just haven’t had the energy.

    I was so excited when I read this post. Congratulations on being a huge step closer. I know these are tough decisions to make, but ones that must be made. I think you are doing a fantastic job in dealing with all of this.

    I’m happy that you are still about living your life as best that you can and not just sitting there waiting. Life still goes on. There is plenty of living to do while you wait.

    You are in my prayers daily and have been since the day I knew of you.

    Although I am not eligible for a transplant anyways. 😉 A lot of my family members and friends do not know that and have all offered to give me part of their liver. Even if I was eligible, like you it would be a very last resort. I would not want to put anyone through the surgery and risks that it involves if I absolutely didn’t have to.

    Wishing you days filled with laughter, joy and love

    Shelley

    1. Hey, thank you once again for your kind words.
      There is definitely lots of living to be done whilst waiting for that call, I’m lucky that I’m as well as I am while I’m waiting and not stuck in hospital.
      I hope you’re doing well after your surgery and feeling a bit more energised? x

  4. Hi,

    Great blog! A real interesting read and comforting in that I don’t feel alone in my PSC!!!! Someone understands!! I’ve been put on the transplant waiting list too in March ’14 and the emotions are a lot to deal with…..espcecially for the family.

    Just wanted to say thank you for posting the blog.

    Rahul

    1. Hello! I’m glad you found my blog comforting, it’s horrible feeling alone with an illness that that not many people understand.
      I hope you’re well and that your call cones soon, waiting is very hard! I’ve been waiting for ten months now.
      Maxine

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