My name is Jon, I am 29 years old and I have End Stage Renal Disease (ESRD). This means that my kidneys don’t work well enough to keep my body alive and I have to do dialysis at least 5 days a week, for at least 3 hours at a time to “clean” my blood. I haven’t let ESRD completely take over my life. I work full time at an elementary school and I go to school full time at the University of Wisconsin-Milwaukee; I’m one year away from getting my degree in communications. I also like to go out at night to study the stars and moon with my telescope. But this disease has taken an unbelievable toll on me. Before being diagnosed with kidney failure I used to play soccer almost every day. It was and still is a passion of mine, but because of how constantly worn out and in pain my body is the most I usually get to do now is once a week if I’m feeling decent. I used to visit family and friends often, and I lived life to the fullest. Now, I end up staying home most nights because I’m always tired and have to do my dialysis treatment.
I have been doing home hemo-dialysis for two years while waiting on the deceased donor transplant list. Luckily for me, someone who is living has recently decided to donate one of his kidneys to me, and once his testing is complete we can move forward with the surgery. If I go the regular route and get the surgery done at a hospital here where I live I can go back to living a somewhat normal life; however, I will have to be on anti-rejection medication for the rest of my life. If I go off of them or forget to take them even for one day my body will begin to attack the kidney and it will fail, there is no maybe. It will. These drugs have also been proven to cause cancer.
There is another option though. There are three hospitals in the United States that have been researching and have successfully completed kidney transplants with an additional transplant taken from the donor at the same time: stem cells. One of these hospitals is only an hour and a half away from where I live (Northwest Memorial Hospital). If it turns out that I am a candidate for a stem cell transplant, I will be having surgery in Chicago.
What does this mean for me? It means leading a more normal life where I don’t have to take anti-rejection drugs every day and a very high probability of the kidney (and me) surviving. The stem cells from the donor will police my white blood cells, telling them that this kidney is mine and doesn’t need to be attacked. This is also good news because while anti-rejection drugs lower the immune system and make it easier to get infections, the stem cell will make my immune system tolerant of the kidney instead and I will be less likely to get sick so often.
In addition to the multitude of medical bills I’ve accrued, being a part of stem cell research means I won’t be able to go back to work for 12 weeks. For those first 3 months I will feel very sick and I will need to stay in the area in case something goes wrong (stem cells can be rejected too, but unlike kidneys you can’t just take them out as they are mixed in with your own). I will also have appointments at the hospital at least once a week for the first month. So not only will I have to pay off the medical bills, but they are telling me to stay in the Chicago area just to be on the safe side. I will have to pay for lodging (which we all know is more expensive in Chicago!) and I won’t be able to work for 3 months. I will also need 24 hour care for at least the first month which means other people will have to take off work too or I will need to hire a caregiver.
Most of all, once I have my surgery and the 3 months have passed and I feel like a normal, healthy human being again, I want to go visit my family in Mexico. Because of my dialysis treatment I haven’t been able to see them in over 4 years as it’s very difficult to travel with my machine and even more so with all the supplies that go along with it.
I’m fundraising because in addition to all of this the phone call could come any day for me to go have surgery and I will need to drop everything and go. In all I’m hoping to reach a goal of $50,000 to help with bills, lodging, travel, and care. Any little bit will help and I will be so grateful to anyone who donates no matter what the amount. These donations will help me to live the happy life I deserve instead of just surviving. If I get anything more than what I need to get back to a normal life it will go to fund more research for stem cell transplants as a replacement for anti-rejection drugs. It is vital that this becomes a more common procedure, and that more than 3 hospitals across our country know how to do it. Thank you for taking the time to read my story. Please share it with everyone you can, and thank you in advance for your donations!