My Journey with PKD
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I found out in my 20s that I had PKD as well. I researched about PKD and tried to live my life as best as I could, given the news. I took care of myself, ate a proper diet and exercised, knowing I would eventually need a transplant.
Fast forward to 2014, I had completed my transplant evaluation and was contacting friends and family for a living donor. In an unlikely place, a good friend’s husband wanted to get tested and we ending up matching a week before Christmas. What a gift!!
I had the transplant at the University of Maryland Medical Center in February 2015. We both recovered quickly and things seemed to go well, until I got a fever in mid-April. Only 2 ½ months after the transplant, what started out as a fever turned into my worst nightmare.
The new kidney wasn’t working and over 15 doctors were desperately trying to find out why this happened. It wasn’t rejection. After many tests and 2 weeks in the hospital, the only result was that the new kidney had developed microscopic blood clots that reduced blood flow. No one at UMMC had ever seen this before, thus placing me in a very rare group of undiagnosed patients.
From April to August 2015, I was hospitalized 7 times. In that time, I had to start dialysis, have the donor kidney removed in June and had lots of other health issues that landed me in the ER. It was definitely stressful and depressing. My family was enduring along with me, and the worst was for my two teenage boys. Each time I was in the hospital, it would be for at least a week, and they had a hard time understanding why this was happening.
I will never forget August 5th, 2015. Dialysis equipment was being setup in my house, and my husband came home and told me promising news. He had signed up to be a Paired Donor in the University of Maryland Paired Kidney Exchange Program. Since he wasn’t a match for me, he would donate his kidney to someone, and I would get a kidney from someone that matched me. He told me he got a call about a kidney chain of 12 people and that we may fit into it. We both got additional testing done and waited to hear if this would work out. I tried not to get too invested because I knew many things could break the chain (if someone got sick, the chain could be cancelled) with multiple people involved.
Luck was with me because on August 26th, I got my second kidney transplant only 6 months after the first one. The second transplant involved removing my original kidneys, so it was a complex surgery.
Today I can happily report that I am doing great! Due to the first transplant complications, I am on the world’s most expensive drug, eculizumab, to prevent blood clots in the kidney. I receive an infusion twice a month for now to keep the kidney running smoothly. University of Maryland is conducting research and collecting information about this drug with me, in hopes of gaining knowledge if ever my situation arises with another patient.
Having endured the worst year of my life, I can honestly say I learned a lot about myself. I faced things that I never expected too, at times felt like giving up, and wasn’t sure it would all be OK. By having loving family and friends support me, I was able to make it through and have a deeper appreciation for life.
But I have to say, what impressed me most was the dedication of my doctors [at the University of Maryland Medical Center] who spent many long hours, weeks and months to help me each step of the way. I know I would not have been able to get through this without them. I’m specifically appreciative of Dr. Eugene Schweitzer, Dr. Matthew Weir and Dr. Beje Thomas, not to mention the fantastic nurses, technicians and hospital dialysis staff. They took care of me like I was part of their family. For that and so much more, I will be forever grateful. I would recommend to all who are in need of a transplant to visit University of Maryland.
I’ve learned that this disease doesn’t have to encompass my entire life. This is only a small part of who I am, and I won’t let this dictate the happiness I can find throughout my life. For those reading this, I hope this give you comfort and peace knowing that although this journey maybe long and arduous, it doesn’t have to feel like the end. It’s just the beginning of great things to come.
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