I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: nmccart on February 06, 2007, 05:42:47 PM
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My name is Nathan. I am stopping by to describe my transplant experience to you all. I posted to the introduction thread, and I received several comments asking to hear my story. So, here it goes, and I hope you all enjoy it!
I was diagnosed with Polycystic Kidney Disease in 1998. I was a sophomore in college. I was having terrible pain in my back, and I went to the hospital. They ran a CT scan and discovered that I had kidney stones and that I had Polycystic Kidney Disease (PKD). I received a pamphlet from the hospital describing PKD, and was told that I should see a nephrologist. I saw the one nephrologist in town one time, and he was not much help. He said that I would need blood pressure medications (at some point) and that I should follow up with a normal doctor back home. I saw one when I got home and all he did was diagnose me with mitral valve prolapse ... great.
I moved from Arkansas to the Dallas area in 2001 with a new job. Once there, I found a nephrologist for my kidneys and a cardiologist for my mitral valve prolapse. Between the two of them, we got my blood pressure under control, and my kidney function was closely monitored for the next three or four years. My kidney function was declining, based on my raising creatinine and BUN. I took my first Glofil test and discovered that I had about a 20% kidney function. At this time, my kidneys were each about 25 – 30 cm long (which is pretty big for kidneys).
So, we fast-forward to February of 2005. I am 26 (almost 27) years old, and I have a minor stroke. The symptoms I experienced were just right-sided weakness (less control of my right hand, and a “heaviness” in my right arm and leg). There were no problems with speech or vision or anything like that. The doctors had no idea what the cause was except to blame my high blood pressure. The neurologist gave me some blood thinners and some vitamins to lower my homocysteine levels.
I had been diagnosed as anemic at the end of 2004, and was taking Aranesp shots to keep my hemoglobin levels up. I was also having a lot of blood in my urine. I thought the two problems might have been related, but the nephrologist assured me that blood in my urine was common with PKD. After the stroke, once I had started on the blood thinners, the blood in my urine only got worse. I was sick a LOT over the next few months. I was vomiting a lot and was not able to work as much as I had been. I went to the Emergency Room in the last Wednesday in May, worried that I had a kidney infection. The doctors sent me home, saying nothing was wrong with me, despite all of the vomit and sick feeling I had. I went to my family doctor who gave me some antibiotics to help with the infection, but it was too late.
I went to the ER again the following Sunday night. They admitted me to the hospital, as I was much too sick to go home. My hemoglobin was dangerously low, and they had to give me some blood transfusions. The problem was, after several transfusions and several liters of saline, I was not getting any better. In fact, I was getting worse. My stomach was becoming distended, and my hemoglobin was still too low. I was gaining weight quickly. It seemed that my left kidney was infected and that the cysts were bleeding into each other. This was not good, and they decided to remove it.
I had surgery to remove my left kidney. They sliced me open down my stomach from the bottom of my sternum to just below my navel. It took a LONG time to heal ... not that I ever really did. They finally took me off of the blood thinners, to keep me from having further complications, after I started bleeding in my urine again, and started feeling worse.
I had a fistula put in to my lower left arm while I was still in the hospital (in June). The doctors knew I would need dialysis soon as I was still getting sicker. The nephrologist wanted to wait as long as possible, but I was just too sick. I started dialysis the last week of July in 2005. I used my little, barely developed fistula to be treated. It never did very well, having an access flow of only around 300.
I did manage to have another Glofil right before I started dialysis, and I was less than 10% on my kidney function. This was enough to get my on the transplant list. Of course, changing jobs in the middle of all my paperwork did not help. It meant that I had to get new insurance which meant that I had to fill out all the paperwork twice. I was finally ready to get on the list by the end of December of 2005.
My fistula did not work out well for me. It never ran very fast. The vascular surgeon tried to do a fistula revision to make it wider, but he was not able to. Finally, one of the technicians at dialysis infiltrated the fistula and it just stopped working at all. So, I got ANOTHER perm-cath in my chest (probably the second or third one) and the vascular surgeon put a new fistula in my upper left arm. The veins there were larger, so he hoped that the new fistula would work better.
It took a couple of months for the new fistula to develop, but my catheter stopped working before the six weeks had passed. We struggled between the new fistula and the catheter for a month or two, waiting for one of the two to work correctly. The technicians were finally able to get the fistula to work enough to get me a decent treatment. After about six months with the new fistula, I was consistently getting to go 400 on the dialysis machine and use 15-gauge needles (the largest they used at our clinic).
As I said earlier, I started my transplant testing in January of 2006. I finished all my testing by February, and was ready to find a donor. I had several friends and my father offer to get tested. My dad got his testing done first, but he had too many cysts on his kidneys to be a good donor. Second, a friend of mine from church (not related) offered to be tested. It turned out that his creatinine was too high to be a good donor. Third, a friend of my mother-in-law offered to be tested. She started her testing late in 2006, and she was a good match. She had her final testing to be done in January of 2007. We were on track for a transplant in early February.
I got a call from the hospital on January 11. They said they had a potential kidney for me in the hospital about an hour and a half away from where we lived. My wife and I drove to the hospital, getting there around 6 am. We stayed there all morning, and found out around noon that my blood had no antigen problems, so I was good to go. They were doing four cadaver donations that day, and I would have to wait. I went down to the surgery waiting area around 9pm. The surgery began around 10pm and I was in the ICU at 3am Friday morning.
They released me from ICU about 6pm on Friday, and I was sent home the following Tuesday. Since then, I have been going to the hospital for follow-up clinical visits. My blood work is looking great, and I am feeling better than I have in a couple of years.
I had my staples removed on Monday the 4th of February, and I am ready to get back to my life as it was before dialysis. I will continue to go to the doctor for regular visits, though they transferred me to a closer clinic (an 45 minutes away instead of 90 minutes). I have my Prednisone reduction schedule, and I am looking forward to going back to work.
I keep a blog at http://nmccart.blogspot.com/ with all of my story in it (if you want to read more).
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Wow what a ride. Thank you for sharing this with us and I'm glad things are going well for you.
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Nathan, I was with you all the way! Thank you so much for telling us your story. I feel hope right now.
:beer1;
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Thanks Nathan. You mentioned that your dad had cysts. Did they check if he has PKD? It's usually inherited except in rare cases where it can spontaneously occur. My dad died at 28 years old of a cerebral hemmorage due to the high blood pressure caused by PKD. Of his 4 children, 3 inherited it. Usually it is 50% chance for each child. I am so glad you got help when you did!
Karol
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Actually, one doctor looked at my mom, and another looked at my dad. Both doctors told them that they had a lot of cysts on their kidneys. Neither doctor made a "diagnosis" of PKD for either parent. I do not know if they were trying to avoid insurance issues, but I do know that both of my parents have cysts.
Out of two children that they had, we both inherited PKD. I realize the odds are 50% per child, but it looks like we both won the PKD lottery.
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What kind of immunosuppressive meds are you on right now? I only remember Imuran and lots of prednizne.
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Right now I am taking:
500mg of Cellcept three times per day
20mg of Prednisone once a day
and
3mg of Prograf twice a day
Plus a giant handful of other medications, like anti-bacterial, anti-viral, and anti-fungal, not to mention hypertension, allergies, sleeplessness, and some vitamins!
Yippiee!!
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I had my transplant Jan 14th, i'm on a steroid-free regimine. :D
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Congratulations and best of luck to you two. I hear some transplant centers infuse you for the first few weeks.