February 3, 2017 is National Wear Red Day.
Let's unite to fight heart disease and stroke.
Wear red and give to support research and education.
Fundraising Goal: $800,000

Brewster, NY

04/23/2017

$52,827
Our
Progress
$170,000
Our
Goal

Meet Robin

 

Robin Zencheck- PHW 2017 Honoree

Robin Zencheck Family- PHW 2017 Honoree

 

It was a beautiful early spring day in April 2003 when I developed a cough.  Thinking it was allergies or a cold, I went to my internist who immediately thought this cough was heart related and ran at EKG.  He was right, it was heart related but the cause for what he thought was congestive heart failure in a 47 year old woman was strange.  He recommended that I see a cardiologist.  

The first cardiologist began treating me for congestive heart failure but I continued to get worse.  I was recommended to another cardiologist who was convinced there was more to the story.  After examining me he set me up for a battery of tests at the hospital. 

After a cardiac cauterization on both sides of the heart we got the call.  My doctor asked that both my husband and I get on the phone.  That is never a good thing.  He starting the conversation by saving that I would need a heart transplant.  The cause was still not known although he had a strong suspicion that I had a rare disease called amyloidosis, an over production of protein from the stem cells in the bone marrow that enlarge and thicken muscles.  Mine was lodging in my heart. 

My doctor had me admitted to the hospital where another battery of tests was performed. The doctor confirmed after taking a biopsy of the heart that I indeed had amyloidosis.  Now the discussion began on how to treat this disease. 

I was told that I would need a stem cell transplant to rid my body of the disease but first I would have to have the heart transplant because my heart was not strong enough for me to survive the stem cell transplant.

In October of 2003, I was admitted to hospital to wait for a heart. On the morning of November 1, I was told a donor was found.  A 33-year-old man had given me the gift of life.

After several months, I began the preparation for the stem cell transplant.  I had to take several shots so that I would increase the production of my own stem cells.  I was then treated with chemotherapy to kill the amyloid cells. The cells were then removed from my body, cleansed of the amyloid and re-transplanted back into my body. 

Both the stem cell transplant and heart transplant were successful.  The issue was that after the chemotherapy and the immunosuppressive my immune system was so low that I began to become sick.  After bouts with cytomegalovirus, endocarditis, adenovirus, and pneumonia I was put on subcutaneous immunoglobulins to increase my immune system without effecting the immunosuppressive that were protecting my transplanted heart.  That treatment proved successful.  The amount of disease I was having was cut down successfully.

As part of the transplant protocol, monthly, semiyearly and eventually yearly biopsies are taken to measure the amount of rejection (if any).   After 10 years, my doctor informed me that I was beginning to show the signs of post-transplant coronary artery disease, a form of rejection.  This was causing occlusion of the main arteries feeding blood to my heart.  As it got worse he monitored the effects and in November 2014 I was informed that I would need another heart transplant.

Unlike ten years ago, the donor pool in New York had declined and the amount of transplants the hospital was able to do was lessened to the point where my only choice was to go out of the state to seek a donor.  My doctor recommended I be evaluated by the director of cardiac transplantation at Cedar Sinai in Los Angeles.  In May I was evaluated and in June I was asked to move out to Los Angeles to await a transplant.  During my evaluation it was decided that due to the lack of blood flow and the medications I had been on for years, my Kidneys were failing and a heart and kidney transplant was suggested.

How a person can be so lucky is beyond me.  I went to California in June to await a transplant and received another gift of life on July 8th and 9th from the family of a 27-year-old woman.  I stayed in California through mid October.  I was cleared form the transplant teams in California to return to my doctors in New York.   I am on a 3-month biopsy rotation right now and look forward to being seen every 6 months.  I feel great and I try to stay in good shape.  I go to the heart rehabilitation under the supervision of Cathy Ahern and Liz at Putnam Hospital 3 times a week.  I feel exercise on a daily or weekly basis is so important to improving ones stamina and quality of life.

I am so lucky and grateful to have so many precious things in my life.  I have a great supportive family that has carried me through my ordeals from the start.  I have close friends and groups of friends that I feel like are part of my family.  I walk around with a smile on my face almost all the time.  These people should always know that they are the reason for it.  I hope that if there is a message to take from my experience, it is to try to smile and always be thankful for the life you have and in some cases have been given.