This is a Blogging A To Z Challenge Post
The blogging A to Z challenge has brought some new traffic my way in the past two weeks, and the majority of the visitors never heard of Sarcoidosis until they came my way. One person wrote to ask me what exactly are the conditions caused by Sarcoidosis, and I shot back an email with the list of my conditions caused by the disease.
The other day however, I went in for my quarterly appointment with my sarcoidosis specialist, and the nurse before hand was going over my medications as they always do, but this time she went over my conditions.
If you follow my blog, you know that I am not one to harp on my disease or whine about it, so when someone asks me about them I give the standard list of Sarcoidosis of the lungs and heart, heart failure and pulmonary hypertension. Not that I am in denial, believe me, I am not, but I don't constantly think of what I have.
The nurse started to call out other stuff besides that list I just gave, and as she was calling out stuff I was just saying “Oh, yeah, forgot about that”, and she got all huffy and matronly telling me that I must not forget as it is important for medical personel to know these things. She is correct to a point, but really, I don't go around with this list in my head of everything that is not perfect with me.
So for that person that asked me if sarcoidosis is really a “serious” disease, and what history of conditions do I have since getting it, here is the more detailed list of my conditions. After I post this, I am sure that in a couple of weeks the majority of them will return to the place in my brain where I store my “what evers”.
So here goes. Pulmonary Sarcoidosis, Cardiac Sarcoidosis, Heart failure, Pulmonary Hypertension, Implanted Defibrillator, Patent Foramen Ovale (Hole in the heart), Dypsnea, Elevated Hemidiaphragm, Transient Ischemic Attack, Mitral valve regurgitation, Ectopic heartbeats, Ventricular tachycardia, cardiomyopathy, Abnormal PFTs
Before anyone looks at this list and their eyes fly open, here is the very positive side of all this. Yes, there is a positive side, and that is why I don't ever focus on that list. Each of these have a positive side to them, and here they are.
Pulmonary sarcoidosis and cardiac sarcoidosis are not “active”. Heart failure has improved to the point where my heart function is now considered “normal”, baffling doctors. Pulmonary hypertension is now non existant at rest. Implanted defibrillator, yep I got one. PFO, is closed and finally stopped leaking after six years. Dysnea, yeah, still got that so sleep with oxygen. Elevated hemidiaphragm, well, I am an anomaly, and although it is very elevated, it still functions, which doctors are baffled about. Transcient Ischemic Attack, it happened only once. Mitral Valve Regurtitation is still there but nothing to talk about. Ectopic heartbeats, well those are my latest thing to figure out. Ventricular Tachycardia has decreased, so much so I have not had an episode in a little over a year and a half. Cardiomyopathy, heart has returned to normal size, again baffling doctors. My PFT numbers have improved.
So you see, being an anomaly can be a really good thing.