It is the night before my beautiful wife gives birth to our second child. I am alone thinking about the future of my children and the critical role I will play in their lives. My responsibility to these 2 children is to be the best father I can. To be the best, I must be there, physically and mentally. Being there is my biggest challenge in life. A challenge that I am accomplishing every day with
love, support and determination. I want to be there for my children and participate in all the events of their lives no matter how insignificant or momentous they are. For me to be there for my children I need and Kidney transplant. My name is Joe Weissinger. I am 42 years old and I suffer from Membranous Nephropathy. In layman’s terms, my kidneys deteriorated because of my disease and I am staying alive by dialysis 5 days a week. How I got my disease is unknown. I was living a relatively normal life of a man finding his way through life. One night in the spring of 2009 I went to a Phillies game and noticed my feet were awfully swollen. My skin was overlapping the leather straps of my flip flops. My feet and ankles looked like they were stung by bees. I told my girlfriend at the time (My wife Bridget) and she had me meet with a cardiologist. Bridget worked at a hospital in Philadelphia and she could get me an appointment right away. I was in the care of this top cardiologist for 6 months then he determined that I had a kidney issue and that I should see a Nephrologist. Sure enough, after having a biopsy, my disease was discovered. It is a rare disease with unknown origins. The doctors told me 33% of the patients diagnosed can manage it, 33% of patients see it go away, and 33% wind up with end stage renal failure. I was taking aggressive and experimental regiments of medications along with high doses of diuretics for about 4 years. Finally, in June of 2014 as predicted by my nephrologist I was admitted to the hospital with pneumonia and my kidneys no longer functioned. I could not process the fluid from my body. My lungs were filling up with fluid and I was slowly drowning. Dialysis was the only way for me to survive. Immediately after being released from the hospital I was enrolled into a Home Hemo-Diaylsis program. I learned on how to administer dialysis at home with a care partner. I am stubborn and determined to be independent while on dialysis. I did not want to burden someone with caring for me although I need someone in my house when I am treating in the case of an emergency. I learned the ins and outs of the treatment, machines, equipment, and cannulating. I started by administering dialysis by a port that was sticking out of my chest to eventually getting a fistula put in my left arm. It was a long road to master dialysis, however I have no choice, this is how I stay alive. Without dialysis I won’t be able to survive more than a few weeks. Dialysis is a job. I spend 5 days a week with a 5-hour commitment to dialysis. I not only complete a treatment, I also manage inventory, repairs, and all scheduled appointments with my care team. The luxury of treating at home is also a burden to manage. Again, I do this mostly on my own. I have help when needed, I just rather be as independent as possible when treating. I try the best I can to just lead as normal of a life as possible. In the beginning of my life on dialysis I had a career and worked full time. However, after a year of struggling with maintaining my health along with the normal pressures of work I had to stop working and go on Social Security. The physical part of my job was not very demanding for a normal person; however, I am not normal. Something as simple as a long drive in a car is now a struggle. I become very fidgety when driving and my stamina does not last long. I find myself sleepy and anxious when driving anymore. I can become exhausted from daily chores. A few trips up and down the stairs in my house and I need to sit. What is more troublesome is keeping up with my children. We have a 4-year-old who is full of life and involved in everything he can dream of. We also have a newborn who we want to provide the same opportunities for. As most people know being a parent is the hardest and most rewarding job of all. I struggle to keep up with my kids. My son is more aware of what is going on with me and ask about it all the time. The other day he asked me, “How much longer are you going to be on dialysis?” He wants to know why I do not go to the doctor for a new kidney so I can play with him all the time. It is funny that such an innocent thought of a child hits so deep. He is right. Physically I can only keep up for so long. My son and I can only wrestle for a few minutes, I can only run and play tag for just a short period of time. A trip to a zoo, or theme parked must be well planned out with opportunities for me to rest and recover. Any vacation my family goes on is limited due to scheduling dialysis. Day to day I try my best to keep up with my role as the father of the house but I exhaust myself when I do. I know I push myself too much and it is getting harder for me as I get older. No one knows this more than my wife. Ironically the more I do the harder it is on her. For example, last week on my day off dialysis I spent an afternoon assembling and cleaning baby furniture for our daughter. Once I was finished I was done for the day and in bed. My pregnant wife then had to take care of me and our toddler son. Now I am tired of being tired. I want a new kidney. I want a new lease on life. I want to be able to keep up with my kids and my role as a father and husband. I used to be uncomfortable with people volunteering to donate a kidney to me and there have been a few. For various reasons they did not work out. I was OK with waiting for the hospital to call with a kidney. It was not personal and easier to deal with if I did not know who donated a kidney. However, this course of action is delaying my progress. I hear a lot of success stories of people campaigning to the public for help and I am ready to do that now. There are good people in this world that can do amazing things for others. I need one of those people in my life now. So please, if you or someone who know wants to help me, share my story. Any possible donors can contact me or the transplant team at Jefferson Hospital.
