In 1999 I was contacted by my cousin Steve to let my family know about a familial amyloid gene, apolipoprotein A1 (non-ATTR) which runs in the family. My father tested positive for the gene, and suddenly we had an explanation of the cause of the heart and other problems that he was suffering from. My cousin also introduced me on-line to a second cousin, MJ, who also had the same problems. MJ provided me with a great deal of information.
In this variant, amyloid deposits in the heart, the skin, the larynx, and other organs. Based upon the voice changes and other symptoms, it became apparent that three of my siblings, my niece, my daughter, and I carry the gene. I eventually went into atrial fibulation and started taking coumadin. I also got to take lots of diuretics to try to control the fluid buildup in my body. When the amyloid support group started in Denver a few years ago, I started attending and acquired a great amount of information.
My father lived to be 75, so I thought that I would probably progress the same way. My second cousin ended up with a heart transplant while my cousin Steve passed away while on the waiting list.
In December, 2007 I was not feeling well and went to the doctor complaining of increased ascites and flu-like symptoms. My vitals were so poor that the doctor immediately put me in the hospital. I found out later that I was not expected to survive very long. I was in cardiac failure and my liver wasn't working right. I had no idea I was so sick.
With the persistence of my daughter and others, the insurance company agreed to let me be transferred to the Mayo Clinic in Rochester, MN. After a month of tests, efforts to stabilize me, and fighting with insurance, I was listed for a heart, liver, and kidney transplant. The heart was the primary problem. The liver was needed to reduce the amount of amyloid being produced, and the kidney was needed to supplement my native kidneys whose function was very low.
I spent many months in the hospital stabilized on dopamine, dobutamine, heparin, and a variety of other meds. I also had a swan catheter in my neck during this time. Although I was in Rochester without family, I was not alone. The nurses, doctors, support staff, family, friends, visitors (several from the amyloid support community), and others kept me alive through prayer, letters, jokes, singing, and caring. I have found that even when you are separated from all that is familiar, you can create a new home and new family wherever you are. God provides all of your needs - you just need to open your eyes to see all that is around you.
On May 20, 2008 I received the ultimate gift of life and underwent a 12 hour operation with three different surgical teams. I spent almost 3 weeks more in the hospital in recovery. In total, I was in the hospital for 6 months.
After discharge, I resided in the Gift of Life Transplant House in Rochester. I was very weak at first and could not get to my feet on my own. In time I slowly regained strength with only a few small setbacks.
I returned to Denver in late August of 2008. I am now fully independent. I can drive a car, shop, dance, walk in the mountains, and not be out of breath. I feel better than I have in 5 or 6 years.
I have been truly blessed to been through this experience, survive, and to have done so well.
Claire