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Life on the Transplant Waiting List

One LifeSource ambassador was on the liver transplant wait list – twice; an experience mixed with hope and dread.

The time I spent on the liver transplant waiting list – of hoping for a new life – also came with a lot of dread. The most poignant part was knowing my survival relied on the extraordinary decision of a person, and the people close to them, in a time of great loss. Waiting for an organ was also a race against my mortality; it’s a tough thing to reckon with. 

Feeling Pretty Normal in a Not-So-Normal Situation

As a two-time liver transplant patient, much of my life can be described as “feeling pretty normal in a not normal situation”.  Giving myself IVs, living life with tubes coming out of me, and regular trips in and out of the hospital have all been situations that feel intensely different at first but quickly wind up being a new normal.  The epitome of these situations was being on the transplant waiting list; a wait that’s long no matter the time that passes and is tiring in a way I can only describe as “soul-exhausting”.  Yet, when I think back to those days spent waiting, I see myself as a person, in a lot of ways, just living their life. My liver disease (Primary Sclerosing Cholangitis or PSC) progressed slowly with each day only being fractionally worse, rather than a giant drop off. 

Waiting for the Call

I’ve had two bouts of waiting on the transplant list – the first when I was fourteen – and it lasted less than a year. The second was in my early twenties – that lasted a few years – and was marked with ups and downs in my health. Looking back, what sticks out are the major, scary events like rides in an ambulance after a vein in my throat burst or getting a biliary drain put in.  However, there were high points too – I graduated from college and graduate school while on the waiting list and made a lot of positive memories, but there was always my health hanging over my head.  There was always a bag packed, a phone in my pocket in case I got “the call”, and with it, a sign of hope.

“There was always a bag packed, a phone in my pocket in case I got “the call” and, with it, a sign of hope.”

The hope I could have the energy to stay up past 9:00 p.m. and wake up before 9:00 a.m.  The hope of measuring my life ahead in years or decades rather than months.  The hope that I’d mark a point in my life of being post-PSC, where I wouldn’t have to obsess about labs or wonder if me feeling chilly was a fever from a serious infection or if it was just because I forgot to close the window.  Ultimately, it was the hope that tomorrow coming would be a certainty rather than a “hopefully and probably”. 

I’m Lucky to Be Here, Writing This

I’m very fortunate to write this blog post today and be able to say that both of my transplants were successful.  I’ve met some members of my donors’ family and it fills my soul to develop a relationship with such amazing people.  I just celebrated the sixth anniversary of my second transplant by running a 5k and spending a lovely day with my partner.  Thankfully my transplant waiting list stories end positively, but that isn’t the case for everybody.  I can’t say enough about how thankful I am for my family, my medical teams, and all the support I’ve had along the way.  Most of all, I’m thankful for my donors and donor families – the transplant list often feels like a race against time and their gift of life has given me so much more time to spend doing things I love with the people I love.

Related post: Pandemic Life: For a Transplant Recipient, Even a Clinic Visit is Daunting

Steve Romenesko is a two-time liver transplant recipient and ostomate living in South Saint Paul.  He’s an avid bread baker, biker, reader and record collector as well as a chronic illness and disability advocate. He also serves as a LifeSource Donate Life Ambassador, educating the community about organ, eye and tissue donation, encouraging people to register as donors.