Kidney Transplant for Jonathan
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!
I want to thank everyone for their donations and support. Despite the challenges I face everyday I still find the strength in me to stay positive and work hard to continue to achieve my goals. I am very grateful to God and all of you who have sent many positive words my way.
I am happy to share that I was added to the transplant list at Northwestern Hospital in Chicago after months of tests. We are heading in the right direction and I know every little thing's gonna be alright (as the great Bob Marley would say). Everyone here has shown me that there are amazing people out there who are caring and willing to help others when in need. As I continue on the path for better health, I also find myself eager to be able to go out and help others by sharing my story. I want to share how people came together to support me even when many didn't know me personally, yet believed that it was worth it to help. My goal is to go out and promote health to as many people as possible, and encourage them to keep their dreams and goals alive no matter what. When you have faith and believe in something, that is enough to keep you going, especially when so many people come together to help you it gives you even more strength.
Please take the time to share my story again. We will still be very grateful for any monetary donations, but we are also still looking for someone to donate a kidney. Northwestern has also informed me that you can donate even if you aren't a U.S. citizen, which is a huge deal, so we really appreciate all your help to get the word out.
I registered for my last semester at UWM and I also registered for graduation for May 2016! I'm excited and I feel very motivated to keep moving forward.
Today I turned 30 and I am very blessed to have spent it with the friends and family who were able to celebrate with me. I am definitely looking forward to many more birthday celebrations like this one.
Some of my friends from middle school put an event together to help me raise funds and awareness for kidney disease. In the upcoming weeks I will be sharing my story with people in hopes of promoting awareness and potentially motivating people to become donors for people that need it.
Thank you again for all of your support. Please continue to share my page as it helps to raise funds and awareness!