Hello,
I was diagnosed with a rare blood disorder in June 2006 called amyloidosis. Amyloidosis is so rare that it often goes misdiagnosed, which is what happened in my situation.
The summer of 2005 I started feeling tired and just not myself. I visited my Primary Care Physician who ran some tests. The tests revealed everything was fine except I had very low protein in my blood. Due to my job relocating, that summer we moved from New Jersey to Texas. I thought I was just tired from the stress of the move. In August 2005, I started bruising very easily. I went to a new Primary Care Physician in Texas and they still could not find anything wrong. In January 2006, I was in San Antonio on business. I woke up one morning with my waist and legs filled with fluid like balloons. I went to the ER in San Antonio and they ran some tests. The tests revealed there was something wrong with my kidneys. I returned home to east Texas and my Primary Care Physician referred me to a Nephrologist. I met with the Nephrologist that week and we scheduled a biopsy of my kidney. The biopsy results revealed I had FSGS (Focal Segmental Glomerulosclerosis). I was treated for FSGS with Prednisone and dieuretics for approximately five months. During that time, I continued to decline. I felt worse as time went on.
In May 2006, my wife was diagnosed with Breast Cancer and was being treated at MD Anderson. During one of her visits I asked one of her doctors for a recommendation for a Nephrologist in the Houston Medical District. She recommended Dr. Foringer @ UT. Dr. Foringer reviewed my files and took one look at me and said you DO NOT have FSGS. He said, he needed my kidney biopsy to re-biopsy it. He said, "let's hope this is not what I am thinking it is." He said, he needed to do a RED CONGO STAIN to rule out Amyloidosis. Unfortunately, I tested positive for Amyloidosis. I asked which would I rather have FSGS or Amyloidosis and he said I will let MD Anderson talk to you about it. So, I knew it was not good news.
I became a patient at MD Anderson in June 2006. In July 2006, I started on chemotherapy and steriod treatment (Revlimid and Dexamethasone). MD Anderson wanted to see if this treatment would slow the progression of the amyloid and it did. So in September 2006, I was admitted to MD Anderson for a stem cell transplant. I spent about 5 weeks in the hospital. NOT FUN AT ALL!! But, I SURVIVED and went home in October 2006. I returned to work in December 2006. MD Anderson has been following me very closely ever since then. As time went on the progression of amyloid was slowing down and luckily it is now in remission.
Unfortunately, my heart, liver and kidneys sustained a tremendous amount of damage from the amyloid and my organs were slowly declining. My Cardiologist Dr. Khakoo from MD Anderson referred me to Dr. Torre @ Methodist Hospital. My doctors from MD Anderson and my doctors from Methodist had many conversations and meetings before confirming I needed a heart, liver and kidney transplant.
In May 2010, I stopped working and went on a Milrinon IV drip. Milrinone is suppose to help the heart pump stronger. I then waited patiently at home for the call that a donor has become available, but that did not happen. My health continued to decline. In September 2010, I was admitted to Methodist Hospital in Houston for a triple organ transplant. A triple organ had never been done at Methodist and there are only about 4-5 people in the entire world. My doctors contacted Mayo Clinic and several other large transplant hospitals and they all said they WOULD NOT attempt this triple organ transplant. My doctors inserted a intra-aortic heart pump to help my heart pump the blood through my body. I waited for 5 1/2 months in the hospital for all three organs. As time went on the doctors realized how difficult it was to get all three organs at the same time. They met numerous times to discuss whether I would survive with a heart and a kidney and leave the liver alone. But, at the end of every conversation the doctors did not think I would make it without a new liver too. Finally on January 17, 2011 we had the perfect match for all three organs.
To make a long story short, during surgery the donor heart was not responding the way the doctors needed it to and they had to find an alternate option. They kept me on the heart/lung machine and they needed to find another heart quickly! That day I was truly BLESSED by divine intervention!! During the four hour window, the transplant team worked intensly and just happened to find a perfect heart that matched at Ben Taub just around the corner. However, during that four hours they had to let the liver go because it was expiring, but they were able to keep the kidney on ice. So, on January 17th I received a healthy heart of a 28 year old male and on January 18th I received a healthy kidney of a 44 year old female. Today, the liver is working better now with the new heart and new kidney and we are hoping it will not have to be transplanted.
It is now mid April 2011 and I have returned to work. I feel great and I am thankful beyond words! Talk about real blessings.... I truly believe that God hears our prayers. I had so many people praying for me that I couldn't even begin to count them. During this journey I tried to stay positive which was really difficult at times. I prayed continually to get through each day and sometimes literally each hour. You know what they say...these are the lessons in life. Well, NO more lessons for the McGuire family! It's time to celebrate and enjoy life.....