The Battle (A Little Background Info)

Prior Success!!

6 Years Post-Transplant!

 On August 4, 1999, my husband, Fred Eldridge, received a huge gift.  He had his first liver transplant at UCLA .  It went well.  Very well.  They often referred to him as their "poster boy."

Why did it go well?  Faith and Divine Intervention.  Love.  Support of Friends and Family.  And strict adherence to the post-transplant routine:  timely meds, appointments, healthy environment, diet, and communication with the team EVERY STEP OF THE WAY.  Despite these guidelines, his life was relatively normal and he enjoyed this new lease on life for almost 14 years.  He exercised, worked well over 40 hours a week, golfed, maintained our house, walked the dogs, enjoyed vacations, and restored and rode his vintage motorcycles.

Something’s a Brewing
The battle really began late in 2013, only we had no idea what was slowly brewing.  Fred had had several cellulitis infections over the years, a few of which had spread to his blood and landed him in the hospital.  Then he started losing weight and feeling extremely tired.  He went in for a routine Liver Clinic exam at UCLA.  His functions had been declining, he was fatigued, he had ascites (swelling in the abdomen), edema in his legs and ankles, some tremors in his hands . . . and he got the news that his transplanted liver was failing and they were recommending him for re-transplant. 

The Big Secret
He was evaluated for re-transplant by UCLA in November 2013 and successfully listed by January  2014.  Soon after, the team noticed his AFPs (alpha-fetoprotein tumor markers) were rising and an MRI identified a tumor in his liver.  The tumor was successfully treated with RFA, but quality of life was diminishing while he waited for a new liver from UCLA.  During this time, he was determined to keep his condition private as he feared the news would cost him valuable clients in the entertainment industry.  Meanwhile he was on medication to help with hepatic encephalopathy and the ascites, but their purpose was to rid the body of fluids and toxins so they acted like diuretics and also wreaked havoc on his intestines.  Being in TV Post Production, Fred was afraid to lose clients and potential shows, so he would miss doses to be able to continue at work.  It was a constant and secret struggle to keep the side effects from the medicine at a minimum and on the flip side the effects of missed doses in check.  He was fluctuating between flapping hands, foggy mind, slurred speech, and crippling intestinal cramps.  His sleep patterns were all messed up and he was exhausted.  He managed this for about a year and a half until a skin cancer on his scalp was misdiagnosed and mistreat by a local dermatologist.  [SIDE NOTE (and news to us): Using Prograf (the drug to keep the body from rejecting the liver) also increases your risk of developing skin cancer, especially if you are treated over long periods of time with drugs that weaken the immune system.]

By the time doctors discovered the scab on his head was skin cancer, it had evolved into a huge infected and oozing tumor.  Doctors at UCLA proposed a 12-hour surgery to remove the tumor, replace the tissue with back muscle, re-route blood vessels from his neck to the new tissue and then graft skin from his leg to the head.  Amazing proposition! The liver transplant team would not OK this surgery because they felt his liver would crash from 12 hours of anesthesia.  They put him on internal hold for a liver transplant because of this newly discovered cancer outside the liver.  We were told the hold would be for 3 months after the tumor from his head was removed.  But he could not get anyone to sign off on removing the tumor. Here we were, looking at two cancers with no solutions.  We pushed until the surgeons stopped scratching their heads and proposed two separate surgeries.

 


1st Surgery - Integra Graft

They successfully removed the 5 cm tumor from his head without having to re-route blood vessels.  However, they had to drill his cranium to expose bone marrow that would promote the tissue growth.  They left him with an integra graft covered with see-through plastic stapled to his head.  The pathology on the tumor showed clear margins, no blood vessel involvement; no nerve involvement; no evidence of metastasizing; and the surgeon shook Fred’s hand and told him he was a very lucky man.  They had gotten it all! 

The liver transplant team met to discuss timing to release the hold on the transplant.  Shockingly they came back with the decision to DE-LIST him, claiming the transplantation was too risky.  They told him this over the phone and added if he crashed during the second head surgery, a liver would not be made available to him.  The news was unexpected and devastating for us both.

He was beaten down, gave in to his condition and was unable to work anymore.  Fred was also depressed because this was not “how he wanted to leave a 40-year career.”  The disability was a blessing in disguise.  Fred finally had to tell people about his failing liver, liver cancer, and skin cancer --  and the support came pouring in.  He managed to take all of his meds ON TIME and ALWAYS and could concentrate on his health.  He returned to the surgeon every few weeks to check the progress of skin growth on his wound. 

2nd Surgery - Healing Message from his favorite 5 year old princess!

Once enough tissue had grown over the bone, they performed a second surgery to permanently graft skin from his leg to the open wound on his head.   He was back in the hospital that night with an infection but was out and doing well within a few days.

 

“No” is NOT in My Vocabulary
After the second surgery and the bad news of Fred’s de-listing, I researched various transplant centers across the country.  I reached out to Henry Mayo in Florida and in Arizona, Pittsburgh, Cleveland, Indiana, San Francisco, Kansas City, and Texas.  Fred's case was turned down over the phone by many, but others were open to presenting his pathology results to their perspective teams.  I was faxing tests and questionnaires and documenting conversations, meanwhile contemplating alternative approaches and praying… a lot.  His coordinators at UCLA were unbelievably helpful with our constant requests for records and doctor referrals to the centers  -- and we honestly could not have gotten far without Kevin and Caroline.

We got a few hits:  Indiana, Kansas, and San Francisco.  Fred and I had to make a trip to San Francisco for him to be evaluated by their high-risk cancer specialist before they would consider liver transplant evaluation – and they cleared him! 

UCSF (San Francisco) evaluation went well!

Indiana was having problems with his insurance, so we did not push.  But, Fred was finally evaluated by both San Francisco (UCSF) and Kansas City (KUMed) at the end of September and early October 2015.  By January of this year, San Francisco had listed him and wanted to petition to get his old MELD (Model for End-Stage Liver Disease) score restored to the 29 he had before he was de-listed at UCLA.  UNOS came back with an even higher score of 31 -- due to his condition.  This was fabulous news, but still meant months to a year before possible liver transplant at UCSF.  Meanwhile, his tumor markers were continually rising -- an indication that the cancer was revving up -- and an MRI in February revealed a new tumor.

We passed the information about UCSF’s successful petition on to Kansas and waited to see what they were going to do.


It’s "Go" Time
About a week ago, KUMed called to say they had listed him and were also going to petition for the same 31 MELD Fred has at UCSF.  They advised him to carry on with a scheduled RFA treatment of the new tumor and even though it could take 2 weeks to get a response from UNOS, they wanted him to travel to Kansas right away, so he can be local when the UNOS response comes in.

That puts us to the present.  Fred’s RFA treatment of this new tumor last week was a "success" and he is cleared to travel.  We have scrambled to ready the house, the dogs, the yard for a live-in sitter.

Pizmo, Biff, and Tank - will they miss us as much as we will them?

We have prepped our car with snow tires, quick filed our taxes, and found housing in Kansas.  I have notified my two employers.  We have said our good-byes to our friends and family and are ready to kiss our lovely furry babies good-bye-for-now.  We leave the day after tomorrow.  Thank you for your prayers.  Your love.  Your support. 

We now breathe deep, put our heads down and move forward.  Stay tuned.