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Mitchell’s story

on February 14, 2012

I’ve been a distant passenger alongside Mitchell’s journey since 2001, when he first showed symptoms of kidney failure. However after reading Mitchell’s first person essay, I got a greater glimpse into his symptoms, surgeries, and complications.

| Friends, this is what resiliency looks like |

Much love,

Mary Beth

written by Mitchell Lyne, June 2011

I was born May 7th, 1993 and weighed 10 pounds, 1 oz. I had to be delivered by C section because I was sideways and would not turn. When I was born I had a little trouble breathing, but with a little oxygen I was fine. Everything seemed to be fine after that, but the night before I was to be released they found problems with one of my heart valves. They said that I was going to have to stay longer, but my pediatrician said that I could go home. I had to see a cardiologist and my heart valve corrected itself. I was just left with a heart murmur.

Everything went well for the next few years except for a minor hernia surgery.

I had a normal childhood; I played soccer, basketball, and baseball. I could out run nearly everyone that I knew, even my older brother. I was really active. The only problem that I seemed to have was that I was thirsty all the time. I would drink several liters of water during the day and take two liters to bed at night. Most nights I would get up and refill them. My mom kept taking me to the doctor for them to check for diabetes. They ran several tests and could not find anything wrong with me.         

My family went camping a lot. One weekend in November of 2001 we went camping. The camp ground had already cut the water off. We took lots of bottled water, but I did not drink as much as usual. When we got home Sunday I felt ok, but my thumbs kept cramping. I was lying on the floor watching TV and my mom told me to stop propping up my hands. That night when we went to bed my fingers started cramping. I was trying to get into my parents’ room and could not open the door. My sister saw me and took me downstairs to show them my fingers. My mom called the doctor and he told them to take me to St. Mary’s hospital. By the time we got there my legs were cramping also. I could not walk. They took me straight to the back and hooked me up to all kinds of machines. They thought that I had been bitten by a black widow spider.    

They called MCV and they came and got me by med vac. I was transported and taken to the pediatric ICU. After more testing, they determined that I had not been bitten by a spider, but that my kidneys were failing. I was in hospital for quite awhile. They had to get my electrolytes adjusted and get my blood pressure stabilized. They could not determine what was causing my kidneys to fail and to this day still have not. I spent a lot of time in the hospital and in March of 2002 they said that I would need a kidney transplant. My dad and sister were both tested and my sister was the best match.           

On March 26, 2002 I had a kidney transplant. My sister, Stacey, gave me one of hers. After the transplant I still had a lot of problems with my blood pressure. They also still had problems getting my electrolytes stabilized. Most people with renal problems cannot eat foods with potassium, calcium, and magnesium supplements, but for my first transplant I had to eat all of those things. In July of 2002 they decided to take my native kidneys out. They usually do not have to do this, but my kidneys were still doing all the bad stuff and none of the good. I was much better after that.

I was in and out of the hospital the next few years. I had to be very careful when in public places because of germs. My immunos suppression medication made it very easy for me to catch any virus or infection that was going around. One time my niece got a vaccine for a virus and I caught the virus from being around her and got very sick. Also I started having lots of intestinal problems and caused me not to eat and I was losing a lot of weight and they found out that one of my rejection medications was causing problems with my colon. It took quite awhile to get that all figured out.         

Anytime I run a fever I have to go into the hospital. I have to go to the transplant clinic almost every week, sometimes twice a week to get my blood drawn. They test my creatin, bun, hemoglobin, hemadacite, and several other things. I have problems with my blood and have to get arenesp shots for this. I had three biopsies on my first transplanted kidney. It starting rejecting a few times and they would make medicine changes. I also had to get IVIG which is an intravenous immune medication and thymoglobulin which is IV treatment against antibody production.     

              

In June of 2009 they told us that we needed to start looking for another kidney. Several people were tested and I also went on the transplant list for a cadaver kidney. My medications were also making me sick and making me get ulcers in my mouth. In January of 2010 they told us that we needed to learn more about dialysis. At our next doctor’s appointment they told us that we had to have dialysis right away. We had to go to the surgery center and have a line put in and start dialysis that day. That made me very sick. I had to go for dialysis every other day for four to five hours at a time. Finally in March they told us that they found a match. On April 6, 2010 I had a second transplant. My god-sister gave me a kidney this time. The surgery went well, but they had trouble getting my blood pressure medicine figured out. They also had to get the right rejection medication. I am allergic to cellcept, one of the main rejection medications.                   

I went home the Saturday after my transplant and seemed to be doing well until Sunday morning when my blood pressure started going up. I am on a lot of blood pressure medication and have one called clonidine that I can take extra and it will bring my blood pressure down quickly. I took a clonidine and it did not bring my blood pressure down. We called the doctor and she said to dial 911 and have them bring me in quickly. My blood pressure continued to rise and they rushed me to my hospital, MCV. My mom told the ER doctor about a rash that I had. They said they needed to get my blood pressure down before they addressed the problems with the rash. They did not seem concerned my blood pressure was more important and they finally got my blood pressure under control and I went home Tuesday with an appointment at the transplant clinic on Thursday. On Thursday they did my blood-work and sent me downstairs to have my dialysis line removed. We were in the parking deck driving out when my doctor called and told us to come back to the transplant clinic. They admitted me and did a biopsy on my new kidney my creatin was up to 4.0. My new kidney was not doing well! They discovered that I was allergic to bactrum; an antibiotic that was to prevent infection from my surgery. That was the reason for the rash! Well, that damaged my new kidney. They also thought that another rejection medication was causing problems with my kidney. I had to stay in the hospital until they got my rejection medicine figured out.         

I seemed to be doing better for awhile except for a few tweaks in my medication.

Then in July my creatin started going up a little. They did another biopsy and it showed inflammation in my kidney. They changed medications again. I had to go to the transplant clinic a lot.                 

I started school in September and thought I was going to be fine, but my creatin started going up again. My body did not like this new kidney. I spent a lot of time in the hospital in the fall. Doctors everywhere were trying to figure out what was going on with my kidney. At one point my sister, my god-sister, and I had to get a bunch of blood drawn at the same time. A team of doctors picked it up to do testing on it. Our blood was sent to all of the majors hospitals in the United States. Doctors at Duke University determined that our antibodies were fighting. I had to go through several treatments called plasma pheresis, where they took all of my blood out and cleaned it. They then separated my red and white blood cells and only returned my white blood cells. I had some kind of blood put in place of my red blood cells. They also thought that the inflammation in my kidney was coming from too much fluid being retained. So they put me to sleep and imported a tube into my kidney to drain it. They found no fluid, just inflammation. I also had to have a central line put in around then because my veins were collapsing from so many IV’s.

After that they decided to give me all the medications they could to try to save my kidney. I went through a series of IV steroids and thymoglobulin treatments against antibody production. I also had a series of IVIG, which is an immune medication and then a series of rituxan, which is an antibody suppressor. All of these procedures were pretty tough on my body. My blood cell count was dropping and they needed to give me a blood transfusion, but my mom would not let them do it until my doctor came back from vacation. Two days later when the doctor got back, she sent me to a hematologist. He agreed with my mom and said that I should not have a blood transfusion because it would just make more problems with my antigens and antibodies.       

   

My doctor finally said that I was going to need another kidney. The problem is that I keep making antibodies against HLA antigens, DQ4, and CW7. They are looking for a kidney without these antigens, which is very hard. I have had several people match, but then when they do further testing they find out that they have the DQ4 and CW7 antigens.     

Right now they are still looking for another kidney. People ask my mom and I what they can do to help and we say…just keep praying.

|Please click here for more information on being tested as a potential donor|

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4 responses to “Mitchell’s story

  1. deanna says:

    Mitchell,
    We love you… Stay strong… We will continue to pray and know the power of prayer holds hope for a kidney just for you … Your courage and strenth and the love that you pocess will carry you through your fight and when you feel not so strong know that we all will continue to pray for you and your family. We love you and will always cherrish your family.
    sincerly,
    Deanna, Amber & Callie Hornbarger

  2. Stacey Daub, Mitchell's oldest sister says:

    Even as his sister…even though I’ve been along side him through this journey… I still cannot fathum all that he’s been through in his short life….

  3. Michael Lyne, Mitchell's BIG brother says:

    Mitchell as by far the strongest person i have ever met in my life, he battles pain everyday and i don’t ever hear him complain, I love you buddy just stay strong your gonna pull through just like you always do

  4. Tricia Glanz says:

    Hi Mitchell,

    Marybeth’s Facebook page led me to your story and I just wanted to reach out and let you know that even people who don’t know you are praying for your recovery. Your strength and perseverance is truly inspiring. Never give up!

    Tricia Glanz

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