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State of Play


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In the past six months, my life has turned into a game not unlike Russian Roulette as I await a necessary but high risk surgery entailing liver transplantation. Those of you who read my blog regularly will already know that I have a potentially terminal disease called Primary Sclerosing Cholangitis. In April I went through the liver transplant assessment to be put on the waiting list to receive an organ donation for liver transplantation.

I have been straddling a line since then of being healthy enough on most days to continue in my role as a mother, yoga teacher, body worker and student; yet on the other side of the line is myself as a liver patient awaiting a transplant. Like most people, some days I feel well, and some days I don’t. The difference is that on the days I feel well I have to remind myself that I can’t do more of what I love doing, restraining my natural desire to be adventurous and fully engaged with life. Then, without warning like a gunshot in the dark, the days I don’t feel well I tend to end up in the A&E on my hands and knees in pain.

Regardless of how I look or how people think I look, the truth is that there have been continuing underlying problems with my health. The many temporary measures like medicines and shunts in my body have helped to maintain a quality of life that up until now have kept me from being a long term in patient at the hospital. All this came to a head last week in a rather grave conversation with my doctor when he considered, for the first time, admitting me to the hospital without an obvious reason.

According to him, cracks are starting to appear in medical plan to keep me well. The first problem is that my liver has built up an immunity to penicillin. Due to repeat courses of the antibiotic used to treat infection in the bile ducts, my biliary system no longer reacts to the medication. This is apparently a cause for great concern as it signals that my system is quickly adapting and rejecting the various medications used to keep me well as I await transplant surgery. A large aspect of how well a patient responds to the surgery is in the aftercare, including the response to drugs that both fight infection and suppress the immune system so one’s body will accept the foreign organ. Second, my doctor feels frustrated that there is not much anyone, or any medication can do for me until I find an organ donor.  Due to the very unpredictable nature of the disease, he fears that I could take off on a downward spiral and deteriorate quickly, or worse, develop cancerous cells in the liver. Finally, while he believes that eventually I will get an organ donation, because of my rare blood type, B+, I may be miserable during the wait, and in the course of this do irreparable damage to other organs as a result of waiting too long. He is very skilled at reminding me that my current situation is like living with a ticking time bomb.

On that note, he urged me to be more forthcoming in seeking a potential live donor  as a backup plan, which is no small feat. A living donor must be someone who knows me well and would be ready to go through a major operation with all the associated risks for purely altruistic reasons. They must be approximately my size or bigger and either be ideally the same blood type (B+) as myself, or in the O blood group. Considering only 8% of the population in the UK are in the B blood group, it is not always easy to have hope that a liver will come through for me in any form. My doctor reminded me that 15-20% of people die waiting for a liver transplant, and if I want to save myself then now is the time to act. Inspiring conversation, no, but a fact-based wake up call? You betcha.

People have continually asked me ‘what can I do to help’? I’m so grateful for this, and yet up until recently I haven’t known how to respond. Now it is becoming more clear what you can do to help for the sake of others in my unfortunate situation, here are two simple things:

What You Can Do: 1. Register yourself as an organ donor.  Talk to co-workers, family members and friends about becoming an organ donor. It does save lives. 2. Regularly give blood. Blood transfusions saved my life and countless others. Get pricked today.

Lastly, if you are interested in learning more about partial live donation, email or call +44 20 7794 0500 and ask for Sarah. She will tell you all you need to know and do her best to dissuade you. If you would like to know a little more about the process prior to calling Sarah,  this document will help you to better understand the procedure.

In the meantime, nothing really has changed. I continue to feel well on most days, cherishing my time with my family and son as well as my time on the mat teaching and practicing yoga. Life goes on as I wait for the telephone to ring or the next bullet to be fired.

#livedonortransplantation #livertransplant #organtransplant #primarysclerosingcholangitis

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