It was a fascinating and inspirational evening. I met a man (Peter Sinnott III) whose life was saved when he had a heart transplant. A short time after his transplant he went skiing and than he ran the NYC marathon in a little over 10 hours! I chatted with Hartsdale resident David Verge who always inspires me. Other attendees at the dinner had similar success stories - kidney transplants, lung, pancreas and other transplants.
The link to the organization is: http://www.transplantsupport.org/. What impressed me: The smiles on the faces of all the attendees. The members of the Transplant Support Organization are appreciative of the small things in life that many of us take for granted. They have been given a second chance at life. Don't get stressed over the small things. Don't get angry when you face minor obstacles or setbacks. Enjoy every day. Be positive. And--if you or a family member requires a transplant, don't give up or get discouraged. Transplant survivors can live long, productive and happy lives. The transplant support organization can help those who require transplants feel good about the odds..
DAVID VERGE'S STORY...
Last year David Verge of Hartsdale stopped by at my office-seeking my help getting a disabled parking spot placed in front of his home.. He was wearing a ventricular assisted device--a mechanical pump that is used to support heart function and blood flow in people who have weakened hearts. The device takes blood from a lower chamber of the heart and helps pump it to the body and vital organs. It was a rainy day and Mr. Verge was worried that if he went out in the rain and the device got wet that he could be electrocuted. The device that Mr. Verge was wearing was outside his body.
Earlier this year I was at Town Hall during the evening. A man with a mask and gloves stopped by at my office. He was smiling. He just had a successful Heart Transplant operation. Tonight when I saw David he was not wearing a mask or glove. He looked great and had a big contagious smile on his face. He thanked me for working with him on getting the parking spot and he offered to speak with residents who have been diagnosed with similar heart problems. it's reassuring to speak to someone who overcame serious medical problems.
Dear Mr. Feiner,
I was more than pleased to meet you today and impressed with the amount of information that was exchanged within the short time we had. Although my first concern is selfish and personal; that is to procure a parking spot for myself where I live so I do not have to suffer, I was extremely moved and I am very open to bring awareness to the plight of congestive heart failure and to show people that it is not a death sentence and I am living proof of that.
I’ll just give you a quick history of myself and how the grim reaper thought he had his grips wrapped tightly around me. I have lived internationally for years; I’ve studied abroad in the historical city of Seville. I’ve visited the monasteries in which Columbus stayed, strayed through the ancient back allies in Morocco and studied the master of fine art in el Prado in Madrid. I returned to the United States but still yearned for my beloved Europe so I left and ended this time in Paris. There I set up shop, literally as a cabinetmaker, catering often to the American community, a world of fashion, photographers and models. I was living the life of dreams. Originally from Westchester I had been back a few times because my parents were getting on and had fallen sick later in age. When my father passed in 1995, I decided to pull up my roots once again to come home to the 914. I had been gone for more than 20 years.
Since I had been working for myself for so long, I fell into the category of sub-contractors of trim carpenters and found it easy to find work in this area. Life went on until I started to have chest pains. Little did I know how my life was about to change. Forever.
I had been suffering with extreme pain smack dab in the middle of the chest, an unrelenting nagging pain to bring such horrors that would make a dental visit look like an amusement ride pleasantry. I went to 3 different doctors, each and every one had e talking antacids, nexium this, purple pill passion and god knows what else, I just know that for the life of me, I was going to explode. So after work, I would take 2 valiums which somehow always seemed to be around and I’d have a glass of wine, and I would have to sleep in a recliner for to lay flat was instant ultra-heart burn as I was told. Only when the drugs kicked in I would relax enough to sleep. One night the pain became too much, I went to White Plain Hospital doubled over in pain. They rushed me to Columbia where I was stented and suffered cardiac arrest. It was then that I saw the grim reaper, smiling with his scythe in hand and I felt the wound he had caused me for something no longer worked. He left me with congestive heart failure, a debilitating disease affecting Americans everywhere. I awoke to a new world with pills, doctors, rules and regulations. Life was no longer something one lived; it was something one worried about.
I suffered and I adapted, I kept going because I had no choice. I had rent, I had a wife, and I had bills. The severity of the problem and the extent of the damage was never really ever explained to me, I think basically because the doctors were afraid to tell me. I went from doctor to doctor with no real explanation or help until one day I went to a cardiologist who had been recommended. I knew nothing of the heart really; I just supposed that this was a kink which would be fixed. I was dead wrong. I was half listening to another blah blah lecture from another cardiologist when all of a sudden I heard the word ‘transplant’ uttered. The word echoed and bounced off the sterile white Formica a few times before I awoke from my reverie. My own heart stopped and I felt faint and time stood still. I made him repeat slowly. For days I was in shock. I became serious after that day. I read everything and became a scholar on the subject. Now I run a heart site on face book and help patients at Montefiore who are thinking of the operation which was performed on me.
I soon started to see a ‘congestive heart failure specialist.’ This went on for years and when I look back, if something bad happened, it happened to me. Murphy’s Law was tailored to meet my health criteria it seems. So my beautiful Dr. Just seemed to run the day in and day out every day with the same criteria; take this pill, take that pill, it was the slow death train to China. At one point I knew my time was limited, I could smell it in the air just as one can smell the changing of the seasons. The gig was up and that the grim reaper would be back I approached my doctor for a transplant and for reasons not worth discussing he flatly refused, basically signing my death warrant. So In a very quick order I made plans and in a hurry I changed my life around.
I exited from the working world. I was no longer able to function, breathe or walk for that matter, so I did what any insane man would do; I got rid of all of my tools. I sold what I could and the rest I donated to an outfit who said they built houses for the homeless, or said they did. Not even a hammer did I keep back, I cut off that arm, I cried and it was like losing part of me, but I had to do what had to be done. I now know what a foolish thing that was to give away thousands of dollars in tools, especially hard to find tools, but one does not think clearly when one is dancing with death.
Next I made the most important call of my life. Not sure who to call or really what to say I just did what came naturally. I found the Montefiore Hospital number and asked for the transplant division, and then I politely told the receptionist that I needed a heart. Just like calling the grocery store. I thought, yeah right, if I hear anything at all, it will be maybe 2 months down the road, but to my surprise within 2 days an actual Doctor called me back and asked me a few questions and within the week I had a scheduled appointment. WHAT. This is something unheard of within the medical profession, a meeting within a week from a nobody, but within a month, I packed my bags and I was en route to Montefiore hospital to receive an LVAD, the first process for me in the journey to obtain a new transplanted heart.
Little did I know that because I was so sick that I would not leave the hospital for the next 5 months. I soon learned who my true friends were, who came to visit, who wrote, who sent gifts, I became emotional at every turn. And God did me right in the marriage department, my poor tired wife came and visited me every day while I was incarcerated in the joint. When I started to get sick from the food, she would selflessly go find me a soothing plain good recipe to soothe my hospital worn intestinal tract, the secret cure all- good Italian Bronx raviolis. Again, you name it; I had it, from infections to multiple ICD implants to removals of ICDS and to ICU delirium and to hallucinations, again Murphy’s Law just hung to me. I was a regular at the OR. They could not proceed with the surgery if there was any trace of infection so I was cut open again and all flesh was scraped away to only muscle. Today it looks like hell. The edema caused by the heart became so bad that the shoes I came with no longer fit by the time I left. I humbly left the hospital in slippers. One leaves pride at the door. It is just enough to smell that wonderful NY air and feel that NY sun.
I apologize for the length of this letter but to appreciate just a glimpse of what I have been through it is necessary to see this shortened version. So the reason I do put in all of this detail is that I was as good as dead to many. But it never even crossed my mind, to me I was just waiting for the LVAD, the machine or pump that would replace my heart’s pumping ability. Later I found out that many thought that I would make it. Well I fooled them all. And now I am an advocate for the hospital itself. The LVAD/Transplant team often calls me to come and visit a patient that is dying or someone that is worried or fearful to get the LVAD operation. They don’t hesitate for a second to call me, the person who was the biggest pain in the ass while in that hospital is now the ambassador. Sweet irony. So I just wanted to point out Mr. Feiner that I’d be more than happy to be an advocate in any manner to provide information and awareness about the options open to people with terminal CHF, it is not the end of the world and here in Westchester there is a LVAD program at Westchester Medical Center. They even do transplants. Feel free to call me anytime. I know the head cardiac nurse as well as the social worker in that field over there. These people would also be willing to help and to provide awareness and education if you so please. Just contact me. So onto the other problem.
In all actuality, I would love not to make the city have to provide a handicap parking space for me in front of where I live, So I leave you with this problem gentlemen, I cannot walk far and I am expecting to get onto the transplant list very soon.
Before I leave you I want to end this with a note concerning my involvement with the LVAD community and my push to help others with heart disease. After my stay in the hospital for 5 months, often in solitary because of infection, my body just dwindled; muscle was whisked away by time and in its place was left a shell. I could hardly walk after all of the operations I had and just crossing the room was a feat that took extreme effort with cursing in a few choice languages. I spent the holidays in the hospital, summer, then fall and then the long onslaught of winter. Halloween came, then thanksgiving and then the Christmas music started, it was like a slow motion movie in that place but I finally made it out and it was so bitter cold I didn’t even want to leave the house but I did. I have a flight of stairs I would attack daily for exercise and I had a trainer who came 3 times a week. We worked and he left me after a month. I continued, alone, afraid and yes always alone to battle my pains along with my fears but keeping death at a far enough distance to make me comfortable. And now after 6 months, I have managed to conquer it all and build for myself some cabinets to put all of my newfangled instruments that bring me life daily. This cabinet is testament of my will to survive, to conquer in the face of all that wants to defeat me, to show the grim reaper that I do have a guardian angel looking over me. To curse myself for selling everything. To especially curse myself for having to buy a new hammer. I thank you sirs. Today is a great day to be alive.
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