Liver disease: Declining health

To meredithdochniak1
I was told by my Tucson doctor that I had inoperable bile duct cancer and that I had 2 months to maybe 2 years to live and that I was too old (71) to get a transplant. That it would be chemo and radiation until I couldn't take it any more. My friends and the nurse practioner knew I was too vital and engaged in life to accept that diagnosis so I reached out to Mayo.
After 6 months of testing, chemo, radiation, stents and surgery to see if cancer had spread, I am now 73 and celebrating my 1st year transplant anniversary in 10 days.
A second opinion especially from Mayo can help you and your father see better into his future.
Barbara aka ajdo129

I want to give everyone the update on the PETH score. The technician read it wrong and used a different scale than usual, my test was negative. And I had the back up from all of my team knowing that there had to be a mistake. Thanks again!

My husband is 71, his Meld score was 15. Here in California the 'team' declined to list him, stating he wasn't sick enough. His doctor told me they were wrong, and he was close to being too sick. He recommended we not listen to 'his' team and look out of state. So in January we packed up and flew to Mayo in AZ.
His wonderful doctor in California had kept him alive until Mayo could save it. Ten days after going to Mayo in AZ he had a liver transplant. Five days later he was out of the hospital and two months after back home. He has and continues to have issues, but not nearly as bad as we feared and Mayo is there for us all the way.
I urge you (and him) to call and talk with the liver transplant team at the Mayo Clinic campus nearest to you or in a state where you have family or friends to support you. Mayo will even advise you about local places (perhaps even on campus) where you can stay if assistance is needed.
Good luck and God bless.

I am in California diagnosed in 2004 with autoimmune hepatitis caused by sulfa antibiotics. Stable on meds until 2010 when generic meds triggered liver failure and was put on liver transplant list with meld of 36. No compatible donor (California). In two years tests started improving and liver enzymes went to normal. I had been on steroids and immunosuppressants for years and had severe side effects. Over the next 12 years dealing with declining health medication related and had 2 major relapses of the Autoimmune Hepatitis. In 2023 at a routine MRI for the liver a dilated pancreatic duct found. Several MRIs, CA19, 2 endoscopic ultrasounds, 1st with fluid biopsy of suspicious cells and the 2nd with tissue biopsy from a cyst in the head of pancreas that was 10mm. I meet with surgeon recommending Whipple procedure and one month later told I’m not eligible. There is not a conclusive diagnosis of cancer. The liver transplant team informs me recently that I’ve been removed from transplant list because as a result of the tests for the dilated pancreatic duct I am now considered high risk and no longer eligible for transplant. After 20 years of doing everything to be healthy enough for a transplant, I am stunned that I am told any treatment if conclusive diagnosis of pancreatic cancer offers no surgery, chemo, radiation and because pancreatic cancer meds to the liver and mine is stable albeit compromised that I am no longer a candidate for transplant. I, too, feel like they wrote me off in a nano second and told me to “live each day” as no options with this medical center.
I am encouraged that you went to Mayo and everything changed and that is the best outcome. I am considering a 2nd opinion at Mayo. I am still reeling from the lack of concern from clinics I have been to for 20 years. I would be interested to know the process to get evaluated at Mayo. I am so happy that you received a transplant and you did not give up.

To asf61 who sent a "like" to my 1st year journey and to any others who have been given a "death sentence" and are wondering what is next.
It is hard for those who have not been given a mortal limit to understand that it is an amazing gift. Until I had been given 2 months to live, life was good, tomorrow seemed certain, goals had vague deadlines, and dreams were waiting at some distant horizon.
2.5 years after my 2 month mortal timeline, I was given a "death sentence" and slapped in the face. Now each day I live is a miracle for me. And I am full of gratitude and joy. As my leash of tacrolimus dosage adjustments and the liver's stabilty is extended , I have less frequent blood draws and tests. Now I can travel short trips, I look forward to longer gaps between blood tests so I can travel farther and longer and eventually promise teacher workshops for schools to have time to approve, advertise, experience and be evaluated. I was lucky, my plan B (seek all possible medical solutions) which I ran concurrently with my plan A (prepare fir my exit) was a real option.
I have a friend who has no medical option to counter her "death sentence". We look at it, as I did, as a "life sentence" instead. I call this plan A. Get all things in order - wills, paperwork, items (photos, objects, etc) noted for those you hope to pass these items on. Telling those you love that denial is a burden on you. If you are in charge of finances, be sure your loved one learns how to take care of finances. Live your life however long with no regrets. My friend's husband is learning how to manage the home. My friend has doubled her engagements to support the community. She is writing, reading, addressing issues that she has held inside. Most of all she is creating wonderful memories by fully enjoying time with family and friends.
And then there is always "C" which is not a plan. Be open to a miracle. You can't plan a miracle nor expect it. What you can do is to allow it to happen.
I believe I was blessed by "C". Though I lucked out with option B of a liver transplant, after the doctors examined my removed liver it was a miracle I had lived to now have my gently used liver.
I hope this helps those whose imagined life span has become suddenly real and more finite. Each day is still is 24 hours. It seems shorter and faster if you measure it looking backward or for those who have been given a time limit, if you look forward.
Barbara aka ajdo129 (my donated liver's identity)

I am in California diagnosed in 2004 with autoimmune hepatitis caused by sulfa antibiotics. Stable on meds until 2010 when generic meds triggered liver failure and was put on liver transplant list with meld of 36. No compatible donor (California). In two years tests started improving and liver enzymes went to normal. I had been on steroids and immunosuppressants for years and had severe side effects. Over the next 12 years dealing with declining health medication related and had 2 major relapses of the Autoimmune Hepatitis. In 2023 at a routine MRI for the liver a dilated pancreatic duct found. Several MRIs, CA19, 2 endoscopic ultrasounds, 1st with fluid biopsy of suspicious cells and the 2nd with tissue biopsy from a cyst in the head of pancreas that was 10mm. I meet with surgeon recommending Whipple procedure and one month later told I’m not eligible. There is not a conclusive diagnosis of cancer. The liver transplant team informs me recently that I’ve been removed from transplant list because as a result of the tests for the dilated pancreatic duct I am now considered high risk and no longer eligible for transplant. After 20 years of doing everything to be healthy enough for a transplant, I am stunned that I am told any treatment if conclusive diagnosis of pancreatic cancer offers no surgery, chemo, radiation and because pancreatic cancer meds to the liver and mine is stable albeit compromised that I am no longer a candidate for transplant. I, too, feel like they wrote me off in a nano second and told me to “live each day” as no options with this medical center.
I am encouraged that you went to Mayo and everything changed and that is the best outcome. I am considering a 2nd opinion at Mayo. I am still reeling from the lack of concern from clinics I have been to for 20 years. I would be interested to know the process to get evaluated at Mayo. I am so happy that you received a transplant and you did not give up.

Get the second opinion! Mayo is attentive, knowledgeable, and on the leading edge of transplantation. I had my liver transplant this year. I can't imagine doing it elsewhere. Best of luck to you!