My name is Brian Tamulewicz. I am 45 years old and live in Berea, OH with my wonderful wife and three daughters, ages 15, 12, 8. I am currently employed as a Sales Coordinator for Banner Service Corporation which is a cold finished steel mill. We are primarily a centerless grinder of round bars and tubes.
When I'm not at work or spending time with my family, I like to golf and do wood-working. These hobbies are very relaxing. Unfortunately, I haven't done a whole lot of either lately. Kidney failure has taken its toll resulting in a number of lifestyle changes. More about those later.
In November 2005, I was diagnosed with kidney failure and my life changed. My doctors believe it was caused by Systemic Lupus Erythematosos (SLE). SLE is a bit of a mystery in that no one knows exactly what causes it. From 2005 to 2010, I underwent Peritoneal Dialysis (PD) which is a process in which a catheter delivers a solution into the peritoneum, and the blood is cleaned by diffusion and osmosis.
In February 2010, I checked myself into the emergency room due to a lengthy period of shortness of breath. While in the ER, an echocardiogram revealed a wildly abnormal heart rhythm. I quickly learned that while peritoneal dialysis offers great flexibility with regard to diet and schedule, it does not do a good job removing phosphorus from your blood. High phosphorus can cause the calcium to leech from your body and migrate to other areas.
A large portion of my dislodged calcium attached itself to my heart valves. Therefore, it was necessary for me to undergo double valve replacement open-heart procedure.
During my stay in the hospital, I contracted a nasty infection of the Peritoneum. I needed to have a “quick cath” installed so that I could switch to hemo dialysis. Hemo dialysis attempts to remove toxins from the blood every other day in a three- hour session but is much more strenuous on the body. The average life span of someone on hemo dialysis is only 5-7 years.
Unfortunately, the thoracic surgeon who performed the valve replacement installed mechanical valves that were too small. After the surgery, I never got to feeling better, and the doctors could not get my blood counts to stabilize. Eventually, they found one of the valves was not sewn in properly and blood was washing around the side of the valve rendering the new valve ineffective. This action was actually beating up my blood and destroying the cells. Because of the "error," I had to undergo a second valve replacement surgery. I had the exact same surgery, but, of course, the surgeon and hospital were different. Fortunately, the correct, larger valves were installed properly this time, and I began to feel better and my blood counts stabilized. The bad part was that the vascular surgeon could not re-install the PD Catheter due to the scar tissue. I went to see a specialist who attempted to install the catheter but was not
successful. I never imagined that kidney failure could lead to heart problems.
The toughest part of my illness has been getting accustomed to some of the changes it has brought. For instance, my job responsibilities had to change. At one time, I was a Regional Sales Manager whose territory was New England. I usually went up there for about a week each month. However, due to the tumultuous year and the change in dialysis methods, I had to move to an inside desk as a coordinator. The fortunate part is that I have been working nearly the entire time I've been ill only needing to take three weeks of short term disability during 2010.
I have also experienced the dietary changes folks with health issues go through. It seems as if everything is bad for you. It is especially challenging to watch the phosphorus intake. I used to enjoy a beer occasionally and Pepsi, but both of them are high in phosphorus. I don't necessarily miss the beer, but it was nice to enjoy one every now and then. Many of the things we eat as Americans, such as dairy products, nuts, dark sodas, beans, whole wheat, pizza, and chocolate, are high in phosphorous.
One of the biggest things I've missed has been being in the water. My younger daughter loves to swim which was permitted on PD (salt and chlorinated water only), but the prospect of an infection keeps me out of the water now. I haven't even had a good hot shower in a year. However, I am determined not to succumb to this illness and continue to do at least some of the
things I have always done.
In the last six years, I have had seven people in my life who have stepped up to donate a kidney to me. Only one, my younger brother, worked out. He has been worked up and approved as a donor. However, he is an A+ blood type, and I am a B+. Since our blood types are not compatible, we have registered at University Hospitals in Cleveland as a donor pair. It is through UH we are also part of the following donor programs: http://www.nepke.org; and www.paireddonationnetwork.org. I have also been to the University of Pittsburgh and The University of Toledo to be registered at their transplant programs.
Currently, I spend 3.5 hours on Tuesdays, Thursday, and Saturdays on hemo dialysis. Trying to schedule around that standing appointment can be tough sometimes. The doctors want me to have a shunt or fistula built in my arm to facilitate the dialysis, but that is a three month process. Due to people going through the donor work up, and the length of time I have been on the transplant list, I have been reluctant to do this. I'm hoping there is someone out there of B+ blood type who be willing to step in and go through the donor evaluation. My brother and I are even willing to join a chain or pairing of kidney donors if needed. This is a process by which someone with a B+ blood type donates a kidney to me, and my brother would then donate one of his kidneys to someone with an A+ blood type. If you are interested and willing to help me, I can be contacted via email at firstname.lastname@example.org. My family and I will be forever grateful for your help.
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