This is my story.
Let’s just say that there’s been a few bumps in the road this last decade of my life!
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After years of having a low potassium level that would get so low my muscles would completely cramp making it impossible to move, my family doctor decided it was time to see a nephrologist. The doctor that I saw was very knowledgeable but puzzled by my case. He diagnosed me with Gitelman Syndrome, an inherited kidney disease caused by a defect in the kidney’s ability to reabsorb magnesium, sodium, potassium, and chloride. My family believed that it could be controlled with medication and things would improve. As time went on, despite many alterations to the medication, there was no significant improvement.
Life Takes a Serious Turn
Things ramped up just before Christmas in 2010. We went to the emergency room for what we thought was a dehydration flare up and after 3 liters of fluid and a lot of potassium, things were not improving. Lying down, my heart rate was around 90 beats per minute, but as soon as I would stand up it would shoot up to 150 beats per minute. The ER docs said that I was severely dehydrated and admitted into the hospital so they could rehydrate me overnight and monitor my potassium level along with my heart. After several liters of fluid and countless infusions of potassium and potassium pills, my potassium level would not rise.
My kidney doctor at Banner Thunderbird had never come across a case as severe as mine, and he believed it was time for me to transfer to a facility that could provide a higher level of care and had access to better resources and more extensive laboratory testing. I will be forever grateful to my Banner doctor because that day he put a call in to the ‘greatest nephrologist in the country’. I was quickly transferred to Mayo Clinic where I would spend the next two weeks.
At Mayo, my mom and I met with several specialists who were perplexed over my diagnosis and the results of the treatments. I had several characteristics of Gitelman’s, but the disease typically does not have such severe symptoms. This led the doctors to consider that it might be Bartter Syndrome, but there was a catch here also. Bartter Syndrome is typically diagnosed in infants who suffer developmental and growth defects if they make it through the early years of childhood.
Despite the best efforts of my medical team, there was no improvement. My Mayo Clinic doctor said it would probably be best to start potassium-hydration infusions for 4 hours, 2 times a week, to see if that would help. Two times per week quickly became 3 times per week. Although I was staying better hydrated, my condition was not improving like the doctors had anticipated. My test results showed that I was actually losing more fluid and electrolytes than I had been in December. My potassium, magnesium and calcium “recipe” was reformulated, and after 4 months, the tests were repeated. Still not the improvements we hoped for. The doctor increased the infusions to 4 times a week. I was now investing 20 hours a week praying that my lab values would pick up. It didn’t happen. As the months went by, I continued to waste more electrolytes and fluids. My doctor determined that it was time to switch to daily infusions at home.
In January 2012, I celebrated my 25th birthday, and received the news I hoped I would never hear:
You need a kidney transplant.
This past March, we started the transplant evaluation process. Mayo’s decision to move forward with this surgery was very difficult because they have never encountered a case similar to mine. With any transplant, the Medical Board must meet and discuss if a transplant is the best option. In addition they must also determine if it is a medical necessity. After discussing my case for 3 weeks, the Board concluded that a kidney transplant was essential. They advised that it is only a matter of time before my kidneys will fail. The Medical Board also recommended that it would be best to do the transplant while I’m still relatively healthy, and soon, before my conditions worsens.
I need a kidney transplant. I need a living donor.
Because my kidneys still technically “filter”, I do not meet the criteria needed to be listed with UNOS (deceased donor list). But frankly, even if I did qualify, the average wait time is 3-5 years, and time is not on my side. The average wait time with a living donor is roughly 3 months.
My ONLY option is to receive a kidney from a living donor.
With that said, this brings me to the hardest part of this journey: finding someone who is willing to donate. It is a very difficult decision for anyone to make and for me it has taken many prayers to build up the courage to put this out there and ask for help so I can continue my journey in life. One of the things that makes kidney donation a little different from other transplants is the matching is not quite as specific. The team primarily goes by the blood typing match. My blood type is A- (negative) so anyone who is type A or O (negative or positive) qualifies as a potential donor.
I really appreciate your time in reading my story. Although there have been many dark and truly difficult moments in the last several years, I have been blessed with positive experiences over and over again. Whether it has been making new friends, or bringing loved ones closer, or just spending time with family in celebration of life itself, there has always been something positive that lifts both my heart and my spirit.
I am grateful for all the support that has come my way . . . all the thoughts and prayers over the years. My family and I truly appreciate everything that everyone has done – and will do for us in the days and months ahead.
Every day I remind myself that
everything in this life is about attitude.
The better the attitude, the better the outcome!