Don Tuffley

First post: 8/25/2016 Latest post: 1/18/2017
In 2003, at age 30, I was diagnosed
with congestive heart failure resulting from dilated cardiomyopathy. It is
believed that the cardiomyopathy resulted from certain drugs it was necessary
for me to have during 18 months of chemotherapy I underwent when I was 14 years
old to treat a type of bone cancer known as Ewing’s Sarcoma. For 9 years the
great team of doctors and nurses that make up the Heart Failure and
Transplantation Unit at Strong Memorial Hospital in Rochester, New York were
able to utilize drug therapy to keep me out of the hospital.

In late January of 2012 my health
again began to decline. It had become very difficult for me to walk short
distances or do any other types of physical activity.  My family and I had a very difficult decision
to make. I would either need to stay in the hospital awaiting heart transplant
on a very high dose of a medicine called Milrinone, or I could have something
called a left ventricle assist device (LVAD) implanted and use that as
something known as a “bridge to transplant”. My heart was no longer able to
pump the amount of blood my body required on its own. This was a very difficult
decision to make, and there were about a gazillion factors we needed to
consider. After much discussion with my family and with the health care
providers I decided to have the LVAD implanted that February. The surgery went
well, and was able to go home in the beginning of March.

For three years I lived with my
LVAD with very minimal side effects unlike ones that others sometimes experience.
Almost three years exactly to the day of my surgery I began having hemolysis.
This is the destruction of blood cells being caused by blood clots building
inside of my LVAD. My pump was replaced, changes were made to my medications,
and I again went home after spending weeks in the hospital.

In the beginning of this year I
again began showing signs of hemolysis. Elevated Lactose Dehydrogenase (LDH)
levels in the blood and dark urine the color of ice tea or cola are the most
tell-tale signs that something is not right. I was hospitalized and given large
doses of intravenous fluids. It was suspected that I again had blood clots
forming inside of my LVAD, and only one year after the last pump change out I
was facing the possibility of another. Fortunately my urine color became normal
again and my LDH levels decreased. I was again able to go home without having
another pump change. The last 6 months have been difficult for my family and I.
My bloodwork has been like a roller coaster ride from hell. While I feel ok, my
medical team is concerned that I need to be close by in the event that I need
another pump change or have signs of increased heart failure. Because of this
it has been decided that the best thing will be for me to stay in the hospital
until I receive a heart transplant.

I have decided to share my story
and document my stay for my family and friends and anyone else that may know
someone with a similar situation or possibly going through similar
circumstances themselves. Be warned ahead of time that I am definitely not a
writer. I’m sure there will be plenty of writing or grammar mistakes. The fact
is, I have no idea how long I will be waiting here for a new heart to come
along or what awaits me on my journey. I am going to let my thoughts fly when ideas
pop into my head. 

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