When I first was diagnosed with sarcoidosis, I was just your average sarcoidosis patient. And as time went by, the hole in my heart was discovered, then they found that the sarcoidosis had become active in the heart and the heart went into failure. Then as a result of those things, I developed pulmonary hypertension, and the combination of all of these things together resulted in me being a “special case” to doctors.It was weird having one of
the most respected specialists and most knowledgeable doctors on sarcoidosis calling me up to see how I was doing and to remind me to come in for an appointment. I had his direct email, as well as all the specialist that were selling with me, and they would all answer my emails within an hour.
I was the special patient, but not in a good way. I was, and still am, an anomaly. I technically should not be alive, and my combination of things should have me incapacitated. But I am not. All the doctors are so confused by how clear my lungs sound and according to them, for the amount of scaring I have, they should sound like grocery bags being crumpled. At one time I was going to see a doctor or have some test done every week. Sometimes twice a week. I felt like a lab subject.
Now, it’s five years later, and I have stabilized to the point where I have to see each specialist every three months and not every week. I still need to take monthly blood tests, but that’s a medicine issue, to make sure my liver is not being damaged.
I don’t get those calls anymore to see how I am doing, well because a) Dr. Teirstien passed away, and b) I don’t have to see my new sarcoidosis doctor more than twice a year. I see my heart specialist so infrequently now that the last time time I went to see him he forgot who I was.
Most people would be upset with this change in their “special patient” status. Not me. I am so freaking happy to be not that special patient anymore. To be just one of the regulars in a waiting room that no one really knows by name. To not walk up to a doctor’s receptionist and not be known by name.
It all means I am as normal as I can be, closer to where I was before I got sick. Just one of the gang that does not need special attention. It’s good not to be special anymore.
Originally posted MAY 25, 2012