Living Well with a Bad Diagnosis - Lung Disease

Monday, April 24, 2017

Comprehensive, Coordinated Medical Care - Part 1

Comprehensive, coordinated medical care. It is what we expect when we are being treated for a serious illness or disease. It is what I have been experiencing since meeting Dr. K. in 2005. When any of the other specialists want to perform surgery or an invasive medical test, I tell them they have to run it by Dr. K. then she and I talk about it.

She is the coordinator of my medical care.

The reasons I am alive today after contracting Hypersensitivity Pneumonitis in 2002:
  • The amazing pulmonologist Dr. K. leading my care
  • Good pharmaceuticals
  • Diet and exercise
All three were needed to work together for my exceptional quality of life and additional years on this planet. I was lucky. Dr. K. arrived to my university hospital in May of 2005 and realized that I was not being treated properly. I was being given prednisone. Period. "See you in three months." That was it. As little as possible. That was my care before she arrived on the scene. As head of the clinic, she told me not to see anyone but her and she took control of my case by:

1. Testing for GERD (fumes going into my lungs causing infections) even though I had no symptoms. It was such a serious case, drug resistant, that I had the surgery call a Nissen Fundoplication to insure the fumes were not able to flow into my lungs. That alone saved me from having so many infections and permanent scaring on my lungs.

2. Pulmonary Rehab. No doctor at the university hospital had mentioned it to me from October 2004-May 2005. I didn't know it existed. My first class was in October 2005 and I believe that this program has prolonged my life plus provided me with much needed social and emotional support through the years.

3. Tested for Sleep Apnea. I didn't have sleep apnea but it proved that I needed supplemental oxygen at night.

4. Airplane Test. This test was to determine if my lungs were strong enough to be in a plane in high altitude. Clearly, I failed that test. She banned me from flying, which I believe has saved my life. My friend died after his lungs crashed while flying, he sought lung transplants and died less than a year later. He told me he wished he had listened to my doctor instead of his own and had not flown.

5. Whether I was strong enough to exercise. There is actually a test to see if one is strong enough to exercise including a blood gas study while under stress and an echocardiogram.

6. Insisted that the antigen that caused my disease was in the portable classroom where I used to run the huge music program. She demanded that I leave the space immediately (May 2005) and then later placed me on permanent disability (August 2005).

7. She continues to test for Pulmonary Hypertension. Negative, so far.

I am primarily treated with prednisone and imuran then a bunch of other drugs to offset the side effects of the prednisone. When I become ill, Dr. K. will treat me with a run of antibiotics. This routine has worked for us for many years.

I am a huge advocate of diet and exercise. We can't control these diseases, we can only control what we put into our mouths and how hard we push ourselves to exercise everyday.

This is the trifecta of what has worked for me for 15 years after I was told I had just a few years to live.

SO WHAT HAPPENS WHEN THERE IS NO COMPREHENSIVE, COORDINATED CARE?

A friend lost her husband a year ago. In one of her emails, she wrote, "We never found a Dr. K." What she was saying is that they never found a doctor to provide full comprehensive, coordinated medical care. Most did as little as possible.

What happens when no physician has taken an interest to drive the treatment? To delve further when the test results are unusual? Sadly, it is a story I hear too frequently. Is it that the doctors are so driven by the hospitals and insurance companies to see so many patients a day and are too swamped to think deeper than the standard responses? As in my friend's case and also present at my university hospital, many of the pulmonologists are:
  • On the lung transplant team
  • Teaching
  • Doing research and publishing studies
  • On the boards of other clinics (several at my hospital are on boards internationally)
When is there time to consider a case that doesn't fall into the usual pattern? My friend walked through a maze of two university hospital pulmonology clinics and one hospital across the country trying to find out what was wrong with her husband. They were given bad information and poor treatment at almost every vital moment.

They had done all that they were told to do. But, at every turn, they were just left on their own. The one hospital across the country was the one who was offering the proper care and provided their opinion to the two local university hospital but they were not interested in even considering their comments. At one point, the pulmonologist at their little local hospital called one of the local university hospitals about moving him for more extensive care. They were told: No one will do anything for you now. Sadly, after an office visit, a doctor told him to check in with the lung transplant clinic then come back to see him in 4 months. In 4 months, my friend's husband was dead.

So, what can you do when you are bumping into this same mess of being treated as little as possible? No answers? No searching for answers? We are lay people, not medical people. We don't know the protocols for treatment. We are scared and trying to be "good patients." This is a whole new world. It is not until a few months into the process when you might realize you are not getting the proper care.

NEXT: What, if anything, can you do if you are not receiving comprehensive, coordinated medical care? 

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