N Is For Navigation

This is a Blogging A to Z Challenge post

April 16th – N

When I started along this journey of my life with sarcoidosis and the accompanying conditions of heart failure and pulmonary hypertension, I had to learn quickly how to navigate my way through the medical establishment. Since I have different conditions, I somehow ended up with a primary care physician, a Pulmonologist, a cardiologist, a heart failure specialist, an electrophysiologist, a sarcoidosis specialist and a cardiac specialist dealing with heart defects.

Needless to say, juggling seven different doctors and their different instructions and trying to keep each one in the loop, lead me to become proficient in my conditions. I learned all the medical terms and procedures and am able to speak with doctors at their level and understand what they are talking about when they start spewing medical jargon, or worse yet, the abriviation for the medical jargon.

More and more, all the different appointments (at one time I had an average of three doctor or lab appointments every week) and the making sure that each doctor knew what the other was doing or wanted to do got me exhausted. Luckily, all the doctors worked well together. But I needed to cut back, and slowly I was able to bring the amount of doctors I have to four.

But still, navigating those four was still tiring. Then insurance stepped in. I would no longer be able to go to Mt. Sinai as they did not accept my new insurance. At first I saw it as a hassle and I was in a slight panic as I was going there for the past eight years. I was comfortable with them and they with me. And therein lies the problem. All the doctors were “comfortable” with my development and no one wants to change anything. Don't rock the boat. Nope. Just keep everything as it is.

And now I found a new doctor that is a cardiologist, heart failure specialist and pulmonary hypertension specialist, all in one. And I like him. He is not a coward and he wants to work with me, not shut me down. And now I have just him and my primary care physician, both of whom get along well. So I can put away my medical navigation system and relax and let someone else steer the way for a bit.



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