Lessons Learned. . .

 

Over my life, I’ve had several medical encounters, which I think others might find useful. To give a background, these have taken place in a small town of about 50,000 people in northern Indiana, in the U.S.

The first occurred in the early 80’s. We noticed that my son, about 4-5 years old, was limping, favoring one leg when he walked and ran. We took him to his pediatrician, who suspected, and it was confirmed by x-rays, that he had a condition called Legg Perthes.

It happens typically in young boys 4-10 years old where the ball of the femur loses blood supply, and dies. We went from his pediatrician to a local orthopedic specialist, who confirmed the diagnosis, and prescribed a treatment which consisted of sewing a loop onto the back of his shoe of the effected leg, and putting a chain between that loop, and a belt loop on his pants, thereby keeping his knee bent, and his foot lifted, so no weight could be put upon it, allowing the femur ball to regrow without further damage.

He had to use crutches. We continued with this treatment, with regular appointments with his orthopedic doctor for more than a year. His effected leg had lost significant muscle mass, from lack of use.

I was with him standing in the checkout line at the local Target store, when a lady approached us, and said, “Excuse me, but I was wondering, does your son have Legg Perthes?” I replied that he did. She related to me that her son also had the condition, and that there was a much better treatment, involving a leg brace, which Riley’s Children's Hospital had provided for her son.

We asked our pediatrician for a referral to Riley’s. After a series of appointments for diagnosis, and measurement, etc. My son was fitted with a brace, which kind of reminded you of a saddle. It attached to both legs, and around his waist. It kept his legs open at an angle, designed to keep his femur ball in the hip socket, thereby providing a good form for the regrowth of the ball.

I remember the trip back from Riley’s from his receiving the brace. He wore sweats, so that you couldn’t actually see the brace, but it was apparent that his gait wasn’t normal. He was upset, at first at having to wear such a contraption, and the attention that it brought him. We stopped for lunch at a fast food restaurant on the way home from Riley’s.

He and I left the table to use the restroom, and after a few tentative steps, he found that he could very rapidly walk, almost run in an odd bow legged crab-like gait, for the first time in a year, and he had a big smile upon his face.

He wore the brace for several years, and when the brace was no longer required, he was fully able to walk and run with full range of motion, and without any pain.

I thank God for that lady in the checkout line at Target. Her having the courage to insert herself into someone’s life, made a huge difference. At the same time, I’m disappointed that it took that chance meeting, and that my son’s medical providers weren’t aware of such a vastly improved treatment. I learned a lesson that day. Doctors are not infallible. Their knowledge is limited. You are responsible for your health and treatment. Search out other options.

The second of my medical experiences involved me. In 1999 I was 44 years old. I experienced increasing fatigue. I’d never been 44 years old before, so I didn’t know what was ‘normal’. I thought that possibly I was just getting old, but it came to a point where I could no longer ignore my symptoms.

I was greatly fatigued. On a Saturday I would lay down for a nap around noon, and not wake up until 7 p.m. Mowing the lawn was exhausting. I would be covered in sweat, like I had run 10 miles. I went to my family doctor, and we began investigating my fatigue. My blood pressure was very odd. A normal reading for me would be 150 over 50. My doctor began treating me for high blood pressure.

I wasn’t improving. I asked my family doctor for a referral to a cardiologist. My wife was present at that appointment, and she witnessed him saying to me, “Why would you want to go to a cardiologist? I can do the same things for you that he can.” We were shocked at his attitude. . .REALLY??? All the additional years of specialized training to be a cardiologist mean nothing?

After that I was adamant. I’m not sure if he referred me or if I went on my own, but five minutes into my appointment with the cardiologist, and his reviewing the same heart echo results that my family doctor had, he told me that I had a bicuspid aorta valve, with moderate to severe leakage, and I needed an operation to correct this birth defect in my heart. My heart was pumping 10 gallons of blood for the 5 or 6 it needed. I was exercising when I was sitting in a chair.

We discussed the treatment options, which he told me were to have my valve replaced with either a mechanical, a pig, or a cadaver valve. Each having their own advantages and disadvantages, the largest of which was that this surgery would likely need to be repeated every 10-15 years according to the life of the replacement valves, and that I would have to be on powerful blood thinners such as coumadin for the rest of my life.

He said that the surgery could be scheduled at the local hospital in a few weeks time. I was uneasy about all this. This was a big deal to me. I began searching the Internet for other treatment options, and I found that Cleveland Clinic was pioneering a repair treatment for bicuspid aorta valves rather than a replacement.

This sounded very attractive to me. . . One procedure to fix my heart, and it wouldn’t have to be repeated. No powerful blood thinners, would be required, but a baby aspirin every day.

I had a very vivid dream, that I should go to the Cleveland Clinic for my surgery. Over the following weekend, Sunday my sister called to tell me of a procedure that she saw on a news program interview with Dr. Cosgrove talking about a treatment for bicuspid heart valves. Monday morning a co-worker told me of seeing the same news program. I made my decision, I would go to Cleveland for my treatment.

I asked my cardiologist to forward my heart echo results, and other diagnostic information to Cleveland Clinic. His response floored me. His words were a mirror of what my family doctor had said about going to a cardiologist. He said, “Why would you go to Cleveland Clinic? Their procedure would require a longer recovery, more pain, a less certain outcome, and if I did the surgery here.”

REALLY? Surgery at the little podunk local hospital would be better than the world famous Cleveland Clinic? What arrogance. . . I went to Cleveland, and was evaluated as a good candidate for the Cosgrove procedure. Dr. Cosgrove would be my surgeon.

I had my minimally invasive surgery May 24th of 2000. The Cleveland Clinic is an amazing place. I cannot say enough good about my care while there. My surgery was 25 years ago, and my original repaired aorta valve is still working fine. A baby aspirin is still all I take for my heart valve. If I had had my surgery at the local hospital, I would have required two and possibly three major surgeries to replace my aorta valve.

The third medical event I would like to relate, concerns my mother. May 2nd of 2007, my Mom had a stroke. She was in the hospital when it occurred. If I remember correctly it happened on a Wednesday evening.

I went to the hospital the following evening to see her. She was in the ICU (Intensive Care Unit). My sister was already there, speaking with Mom’s physician and a nurse. He was pressuring my sister to pull the plug on mom. He said that it was a very long time before they could get an airway started in mom, and that her brain was severely damaged. She would be a vegetable. . . never regaining consciousness, or being able to talk, etc. . . that we should disconnect her from the breathing machine, etc., which was keeping her alive and let her pass.

I thought this was foolishness, and I told them that it hasn’t even been 24 hours since her stroke. We are not going to make any decisions like that until the dust has settled, and more time has passed to make our path clearer.

I prayed with mom for three days. She was in a coma, hooked up to all sorts of equipment. You could hardly see her for all the tubes and tape around her face and head. She made random motions. . . twitches of her legs, etc. as she lay there, but she was not awake.

I prayed with her for an hour or two each day, holding her hand. I prayed out loud, just a stream of consciousness prayer. . .whatever came into my head I spoke those words. . .

Thursday. . . Friday. . . Saturday I prayed with her. Saturday late in the afternoon I was again holding her hand and praying with her. As I said before, she had random muscle movements. . . as I held her hand, her hand twitched. . .a few minutes later it twitched again. . . and a few minutes after that her hand firmly grasped my hand, and I knew she was back.

I ran to the nurses station, and they were amazed. They came into her room, and she indeed slowly began to respond to their questions by nodding or shaking her head. It was a few days before the tubes were out and she could speak. When she was able, she related to me that three clouds, she described them as angels, led her to a doorway where she heard my voice praying. The angels told her that she was to return through that door to life again.

My mother lived exactly another 9 months, dying February 2nd, 2008. I treasure those 9 months. She was never able to come home and live independently, but our relationship grew much much closer. I visited her in her room twice a week. I would go there Sundays and Wednesday evenings after I ministered as a chaplain in the local jail. Each week I would take her tacos from Taco Bell, and we would eat them in her dimly lit room.

The doctor wanted to unplug her, figuring her life from that point forward was worthless. . . Her last nine months she and I did an incredible amount of growing in our love one for another. . .

Do not depend upon your physicians for infallible advice. I value doctors, and I give them huge credit for the very difficult decisions that they face every day. I take nothing away from them, but we are ultimately responsible for the direction our medical care takes. Don’t be intimidated by what your doctor says. Seek out other treatments. If it doesn’t seem right, look for other options. . . look for a referral to a big-city hospital or teaching hospital, where they may have treatments that will take years to filter down to the smaller institutions.

Above all else, pray for leading from God. . .

Lessons from my life. I hope they can benefit someone. . .

Dave