In October 2014, I became very ill and went to go see my doctor. After examining me, he sent me to the ER, where it was later found that I had lung and kidney failure, in addition to very low blood counts. I was sent to the ICU and immediately began dialysis and received a blood transfusion. Sometime during the night after I fell asleep, my lungs filled with blood; and I had to be intubated and sedated. This remained for a few days. During those days, doctors had trouble figuring out the primary cause and did not think I would make it. However, once they finally figured out the cause, I was given some of the strongest steroids available. My lungs quickly began to clear after receiving the steroids, but my kidneys did not.
After I was 'awakened' and no longer intubated, I began to find out all that happened during the days when I was sedated. I learned my blood counts were so low that I should have been dead and that I also received a chemotherapy treatment. I also learned that I would continue have to receive dialysis until my kidneys recovered. Most importantly, I learned the primary cause of my illness: Wegeners GPA (or Vasculitis), which is a rare autoimmune condition that causes inflammation of the blood vessels. Unfortunately for me, my first experience with it was about the worst possible experience.
I was in the hospital for another week or so under close monitoring while undergoing dialysis, having blood transfusions, getting treatment to remove antibodies from my blood, and going through physical therapy, before I was discharged. From this point, I began outpatient dialysis treatments for 4.5 hours each day, 3 days a week, which I still do today. Additionally, I had to undergo five more chemo treatments as part of the therapy to get my Wegeners in remission. It was a large undertaking, but I accepted the challenge and have been attacking my course of treatment ever since.
Once I started outpatient dialysis, my doctor and I decided to give my kidneys 1 year to see if they would recover, before considering other options. Just as I had hoped and prayed for, my kidneys where showing signs of improvement in early 2015, enough where I was taken off dialysis for 3 weeks. But after the third week, my kidneys started to worsen and remained in this state. So in September 2015, my doctor recommended being evaluated for a transplant because I did not need to be in his dialysis clinic with so much life left to live. At first, I was against it. But the more I thought about it, the more I realized that I didn't want to potentially spend the rest of my life on dialysis or deal with the health conditions that can come with being on dialysis for a prolonged period of time. Basically, I wanted my life and health back as both have drastically changed. After our conversation, I set up an appointment at Vanderbilt Medical Center for a kidney evaluation, which took place November 2015. The evaluation went well, and I was told by my surgeon that I was a perfect candidate for a transplant. In April 2016, I was notified that I was put on the transplant list.
Now that I'm on the transplant list, the wait time for my blood type (A positive) is 3 to 5 years for a deceased kidney. While receiving a deceased kidney is a tremendous blessing, my doctors strongly recommend that I try to receive a kidney from a live donor. Having a live donor kidney is overall healthier, last longer, has better outcomes, and bypasses the wait list. Because of this, I am looking for a living donor and asking you to consider being tested to give the greatest gift one can give: life and a higher quality of life.
I understand that this is a large request and undertaking. I also understand if you are not interested at all or hesitant about it. But, I cannot legitimately look myself in the mirror and say that I've taken every step possible to improve my health if I don't ask. So while it may be hard for you to consider, it is just as hard for me to ask you to consider. I will provide all the information (in separate posts) I possibly can so you can have all the information you need if you are thinking of considering. Information sources include the Alabama Kidney Foundation, United Network or Organ Sharing, National Kidney Foundation, and others. I will also have a medical doctor post about the transplant/donor process and its importance. And, you will learn that even if we don't have the same blood type, you can still be a donor through a paired-exchange program (under the post for information on living donation) if you are willing to do so.
If you are considering, please go to https://www.mc.vanderbilt.edu/webapps/donors/donorform.php?tkn=9a95dc to fill-out the Living Donor Intake Form for Vanderbilt. Or you can call the Living Donor Coordinator (615-936-0695 or 866-748-1491). Again, my blood type is A+ and matches with A+, A-, O+, and O-. Additionally, if you are not a match, you can still donate through the paired-exchange program if you life. If you meet the necessary requirements, they will send you a donor kit and work with you from there. The process is a private one, as even I won't know that you are attempting to go through the screening process unless you tell me. In regards to financial implications, there are programs that can help pay for any travel costs you may incur during the screening process. Most importantly, your medical costs related to the donor process will be paid for in full by my insurance. Please note that you do not have to be a relative to donate. If you'd like to contact me directly, you can email me at marcus.simon8@gmail.com.
**In case you were wondering, when I receive a transplant there is little to no chance that Wegeners will appear in my system again or attack the transplanted kidney. For me, I get double the benefit with a transplant. For you, you can feel comfortable that the what happened to my kidneys will not happen to yours if you donate.**
For those who know me, I know reading all of this will be a big surprise to many of you. Please forgive me if you feel I should have told you all of this before now. I have been facing the biggest challenge of my life and needed to be locked in and properly adjust to my life completely changing. Again, please forgive me.
Lastly, thank you for your time and consideration! And if you will, please keep me and my family in your prayers as we will be praying for you.
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