Past

During my High school years I was very involved in sports, Football, Wrestling, & Track & Field. I lettered in Football 3 years, Wrestling 2 years, Track & Field 3 years. Following high school I attended the University of South Dakota on a full ride football scholarship. Out of high school I got very involved in the sport of Triathlon. My greatest accomplishment in this sport was completing Iron Man Wisconsin in 2001. During my sports career I never had an injury or any health problems.

1995: The story begins in my father's office. I had been mentioning some light-headedness. He thought I should see a doctor for it. We made an agreement if he would get a physical I would go to the doctor to get checked out.

Soon after, I found myself in my family physician's office. He did some basic blood/urine work. He noted that my blood pressure was elevated and that my creatinine levels were elevated as well. Creatinine is a by product of kidney function. He referred me to a local nephrologist. From there I had a CT scan and (possibly) MRI, all abdominal. Dr. Marple felt that I had multi cystic dis plastic kidney disease, which is basically cysts inside the kidneys. He prescribed blood a blood pressure med, in hope of prolonging the life of my kidneys.

2000: For five years I went with this diagnosis. I have a very good friend and shot put coach, Gus, whose brother was, at the time, the chair of the neurology dept at the mayo clinic in Rochester. Gus thought his brother could get me in for a second opinion with his friend and colleague Dr. Torres who is also the chair of the nephrology dept. Upon my visit many ct/mri's and misc testing, Dr. Torres felt my condition was not multi cystic dis plastic kidney disease but just damaged kidneys from an unknown origin. Basically my right kidney is non functioning and my left has damage as well but has grown to compensate so I have fairly normal kidney function. Dr. Torres' goal was to keep my kidney function from getting worse, which was helped by controlling the blood pressure, a basic physiology kidney stuff.

Following the initial visit with Dr. Torres I returned to the Mayo Clinic approx 3-4 times for maintenance checking Mri/ct scans, blood draws, x-rays, etc to confirm that the kidneys were staying the same, function wise as well as damage wise. The last time I visited Dr. Torres was 2005 when I moved out to Colorado. Living in Colorado I found a local Nephrologist and followed up with her for routine check-ups on the kidney function.

By the grace of God in 2007 I made friends via a business "adventure" who was a neurosurgeon. He, knowing I had sinus issues, recommended a ct scan to check them out. He happened to volunteer to read them and have a fellow colleague of his, an ENT doctor, check them out as well. They both noted sinus irregularities as well as lesions on my brain and a mass located behind my right eye.

June 2007, the ENT and an ocular plastic surgeon went in to remove as much of the mass they could and clean up/open up my sinuses. The Biopsy on the mass revealed a scar tissue type mass, not cancerous. No explanation as to how or why it was there. Before or after the neurosurgeon sent me to a disease doctor to check if I had some autoimmune disease. More blood tests, and a spinal tap later I couldn't get her to follow up with me. Apparently rather then saying she had no idea, and admit she was human, she opted to not return my many phone calls hoping that I would just go away. Her name is Dr. Messa and I have no qualms about letting the world know I think she is a poor doctor.

Also summer of 2007 I had surgery by the same ocular plastic surgeon to repair my defective tear ducts. All my life my eye water would not drain properly through my tear ducts. He performed the surgery in 2 hours which was scheduled for 45min. He ran into more of the scar tissue similar to the mass behind my right eye.

About the same time my local nephrologist had presented my charts at a conference in Aspen and it was suggested to her that I may have a rare form of kidney disease. She asked me to see a local urologist to come up with a plan with her and to confirm the disease she suspected. Dr. Kim is his name. I call doctors such as Dr. Kim, knife doctors being that usually their only solution is to cut on people. I overheard him speaking with another patient nearby, "We must go in and remove the kidney", the patient repeatedly replied "is this the only option?" It seems kind of drastic but he stuck to his guns removal was the only option. Shortly there after he came into my room to note some irregularities and a need to remove the right kidney and that I might have colon cancer. No worries he called me in the parking lot to let me know he read his brain ie a book and I do not have colon cancer. He made a phone call and realized that the numbers were normal for my height and weight - a phone call that should have been made prior to meeting with the patient! One ultrasound and 1 ct scan later. Needless to say Dr. Kim isn't on my top doctors list.

November 2007, armed with all the latest medical records I took a trip to Mayo to see what they could say. I visited once again with Dr. Torres. I wasn't in his office more then 10 min and he told me that he had consulted with some other doctors and he feels I may have ECD Erdheim Chester Disease. He referred me to a Dr. Luthera who has treated others with the condition. So the tests to confirm the diagnosis began. This was my most grueling visit to Mayo to date. Two Mri's one I was inside for 1 hour 45min which was at the time the longest they had done to date at that location. One I fell to sleep in and freaked out, got very claustrophobic and had to push the panic button. Body bone scan where they inject you with some chernobyl. One kidney function test with a catheter and lasics which was by far the most fun, chest xrays, ekg, ct scan, blood work, urianalysis. All the testing came back to confirm ECD. Heather flew up to meet with the doctors and I. Basically Dr. Luthera spoke of what he had had success treating patients with ECD. Two drugs were mentioned, Cytoxan and Tomoxiphan. He suggested that I go on Tomoxiphan being that we were trying to have kids and Cytoxan runs the risk of sterility.

Dr. Luthera gave us basically 3 months to try tomoxiphan then I was to come back and check the results. My belief is he will suggest cytoxan if he is not seeing results. These 3 months were a way for us to get some sort of treatment and still have 3 months to try naturally to get pregnant.

Upon returning we immediately tried to get in with a reproductive clinic called Conceptions and spoke with a doctor Albrecht. Dr. Albrecht basically said we need to have a sperm count check on Doug and some blood work on Doug. About the same time Dr. Torres wanted me to have another MRI they didn't get done up at mayo. This one was an MRI to check if the ECD had affected my reproduction status. Dr. Albrecht came back with the results not very good count and very abnormal FSH levels in my blood. FSH is an indicator of testosterone levels. This told him that the ECD had in fact affected my reproductive ability. He basically believes that it would be a miracle for us to get pregnant naturally and that IVF is the only option due to the low sperm count. He left us to try on our own for 3 months and wanted me to start banking sperm 2-3 days per week. We have been trying for the past 3 months but all the praying and trying has not worked. So here we are facing another trip to the Mayo clinic. We are financially unable to afford the IVF so needless to say we are concerned.

Dec 2007 Following the last MRI at Mayo and the one at Littleton my arms started hurting real bad. Lots of pain. From some internet searching I found that the contrast they gave me in the last two MRI's, gadolinium, is said by the FDA not to be given to those who have kidney function issues. That would be me! Basically the drug created blockages in the superficial veins of my forearms. Found that out/confirmed with a couple Ultrasounds on my arms and a couple more doctors visits. It would have been nice if they had listened to me after the first MRI!

The last 3 months I have felt fine overall. There have been a few side effects but nothing major like blood clots in my legs or anything.