Update: December 2021
As most of you know, or have read about the first part of my journey, thirteen years ago (2008), I was diagnosed with AL Cardiac Amyloidosis. My life went along nicely until 2019. I began to notice changes and after a CT and PET scan, they revealed a tumor laying on top of my left kidney. This tumor was diagnosed as PTLD, or Post-Transplant Lymphoproliferative Disorder. This is brought on by the long-term use of immune suppressant drugs.
I was told at the time of my heart transplant in 2008 that this could happen with long term use of the drugs. I had a good run, but knew I was going to undergo a series of chemo treatments that would be grueling. So, for the next five months, I went to Vanderbilt to receive treatment. For five days, I had five different chemo’s going 24 hours a day every 21 days. Then I would return home to recover from the high doses of medication and start the process all over.
By the end of September, the tumor was gone and I was on the mend. I won’t say that it didn’t take a toll on me, but for the next year I bounced back rather well.
2021 came in with a storm as my kidney started failing. This was somewhat of a shock, as they had been doing good. Then all of a sudden, my creatinine levels started going up, and my eGFR went down, down and down. My doctors caught this trend and recommended a kidney transplant. Unfortunately, the amyloidosis that caused all of my problems and the light chains revealed that I was no longer in remission. I got turned down for the transplant until I could reduce my light chains which meant more chemo. I began to feel really bad and lost weight as well as became anemic. I knew something had to change, so my renal doctor suggested dialysis until I could get back in shape.
I chose the peritoneal catheter that you can do at home while sleeping. On September 28th, I went into surgery and had the PTD catheter put into my stomach so that I could do the treatment at home. The procedure was a little dicey, but I had a great surgeon and all turned out well. After several days in the hospital, I went home. Unfortunately, I did not do well at home. I couldn’t hold down anything that I ate, so I went back to the hospital for a week. I began on the cardiac floor as my heart needed some serious monitoring, but soon they moved me to the kidney transplant floor where the dialysis was started for the next 4 days. The toxins were being removed from my kidneys and I was getting better. I finally was able to go home with 3 days of dialysis to get ready for my training for the PT catheter that lasted 5 days and then I was on my own.
My machine was delivered and my dialysis nurse came out to make sure everything I needed was there as I prepared to do it on my own. So far, I have been doing well and all is going good with the process.
Even though the journey continues, there is so much hope because of the research and the awareness of the disease today. My life has forever changed. I am so thankful to God, my family and the Vanderbilt doctors for the last 13 years of my life.
Charlotte Haffner is the first Vanderbilt patient to receive both a heart transplant and a stem cell transplant, she has certainly learned that life is all about the journey.