1. I want to live. Right now I’m at a growing risk of cancer – liver, bile duct, colon. And I’m subject to complications that can be life-threatening every time I get a bile duct infection and am hospitalized.
  1. I’m a good surgical risk now. My lungs have healed from the respiratory disorder I had in 2014 – another of those nasty life-threatening complications. I walk and exercise regularly. My mind is sharp (no hepatic encephalopathy). And I’m engaged. In the world in a positive way.
  1. I’m tired of being sick. It’s been going for 10 years now (anniversary in May). The dailiness of the fatigue, painful and relentless muscle cramps that come anytime (yes, even while driving), loss of appetite, loss of muscle tissue and tone and resulting weakness, the inability to travel or to work more – it wears me down mentally and emotionally. It gets hard to fight back sometimes.
  1. The necessity and frequency of all the doctors’ appointments has gotten very old. I’m tired of the driving to and fro, of the waiting, the probing, some stupid questions (are you depressed? – ah, must answer no).
  1. I’ve had 20 ERCPs now. I’d like to never have one again. I hate everything about them – being without food and water for at least 12 hours and usually up to 18 hours, being in the hospital and waiting for them to fit me in, then going to a second day with no food or drink. On the second day, the migraine shows its ugly face.

I want a better quality of life. More than that, I simply want to survive this craptastic disease. A young woman, age 39, with the same liver disease and being treated at University of Colorado Hospital Transplant Center, recently died from a complication on a hospital stay. They couldn’t stop her internal bleed. So she was finally transferred to hospice and died in less than two weeks. Too young to die. She lost the battle with PSC.

Even at age 67 (soon 68), I believe I have much more to do here. I love my life and want to keep it – in better health – for as long as I can.

I am searching for a live donor, at my doctor’s behest. My rating will never make me eligible for a cadaveric liver. With PSC the MELD score (Model Endstage Liver Disease) stays annoyingly and predictably low, and only reflects the results of three blood tests. Mine are all close to normal now. MELD – 6. It needs to be 21 to be in the top lineup for the normal transplant list. I want my live donor to show up. That would be a blessing and an incredible gift to me. I feel selfish asking, but put on the other side, I would do the same for someone I love.

Advertisements