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Hello,
My name is Tony Boccanfuso and I have Polycystic Kidney Disease (PKD).
If you wish to be an Organ Donor my blood type is O+
In 2001, at the age of 30, I had an ultrasound test due to high blood pressure. The test results showed several cysts on my kidneys. At that time, I was unaware that high blood pressure is very common among PKD patients. I now know that more PKD patients actually die from heart attack, stroke, or aneurysms than kidney failure. Up until that point I had not had any other problems with my kidneys.
On December 4, 2010 I experienced kidney failure and was hospitalized for two and a half weeks. I am now on dialysis three days-a-week for three and a half hours each session.
For the first time in my life I was completely aware of my disease and what might happen to me. This understanding led to feelings of depression and fear that i may loose my life to this disease. Through it all, I was able to maintain a strong frame of mind which allowed me to research and educate myself on PKD. It was at this time that I found the PKD Foundation and became a member. Since then I have learned quite a bit about my disease. It is interesting to me that most people I have spoken with, through the foundation, were never aware of the disease in their family; and, those that were could not trace it back more than one generation.
On March 16, 2011 I will go to Yale-New Haven Hospital for a transplant physical in hopes of being placed on the kidney transplant list. There is currently a five-year waiting period. In this three month period of time, my medical bills have been compiling and the cost of a kidney transplant will add on thousands of dollars.
As a response to these escalating medical expenses, I have created this webpage for donations. These donations will help cover my doctor and medical costs. My family and I are extremely grateful and thank everyone for the help they have given us so far.
As an addition to this page, I would like to help inform others about Polycystic Kidney Disease (PKD).
Even though very few people have heard of it, Polycystic Kidney Disease affects 600,000 people in the U.S. alone, and 12.5 million worldwide. There are more people with PKD than Cystic Fibrosis, Muscular Dystrophy, Hemophilia, Downs's Syndrome, and Sickle Cell Anemia combined. Many PKD patients find it useful to have access to the same information as their doctors. I will try to bring you as much information and resources on the disease as possible.
If you have any questions about PKD, if you know of anyone who has the disease and is looking for more information, or if you are looking for support groups I encourage you to contact any of the sources I have listed here. Also, if you have any pertinent information or resources not listed here please do not hesitate to send me an email so that I may add them to the page.
PKD has been a profound part of my life so far, and it will only continue to do so. Likewise, the information on this page is just the beginning, and will continue to grow as time and research allows. If there is just one person out there that this page helps, I will be grateful for having the opportunity to make a difference.
Thank You All for your Support,
TonyB
tonyb@fightpkd.com
