Yep, I’m From Pluto

When I was a child, I always had an unconventional sense of humor that some people didn’t understand. I always told anyone that could not understand my humor a story that went like this. There were two souls in the soul bank,  located directly between Earth and Pluto. One soul was meant for Earth, the other for Pluto. Due to a miscommunication at dispatch, the soul for Earth was sent off at the same time as the soul for Pluto, but from opposites sides of the bank. The two pods collided in mid space, bounced off in opposite directions and the soul for Earth was accidentally sent to Pluto, and the soul meant for Pluto came here to earth. I was the soul meant for Pluto, and I am trying my best to assimilate to your planet. I think people probably thought I should be institutionalized at that point.

On Monday I went to my primary physician, who is also my primary pulmonologist, to go over the results of my stress echo test performed last week. My primary cardiologist wanted me to speak with him because while I was doing the stress test, my oxygen saturation levels dropped to 77%, and he felt that was cause for concern. Since the heart function was ok (for my condition) at rest, at exertion, it was not good.

My primary pulmonologist is a really great person, a doctor that thinks outside the box. I always credit him for my being alive today, not for some miracle procedure, but for thinking outside the box. He believed that what I had back in 2007 was a mini stroke and not because I slept badly (see my story) and he was the one that told the cardiologist to do a transesophogeal echocardiogram, and to add a saline test to check for a PFO, when my cardiologist thought it was not necessary. He is the only doctor of all the specialist that I have that talks WITH me and not TO me. He listens, and I trust him. For that reason, I listen when he talks, and going to his office to hear what was up with me was worrisome, because I knew he was not going to bullshit me or just pass everything off as nothing, unless it was nothing.

It turned out that he was concerned, but not worried. As he explained it to me, my case is unique. When he speaks with my other specialist (I have six different specialist that work together on my puzzle), they all agree that I am a very unique and baffling case, and none have come across someone with my combination of issues. Not only my combination of issues, but they are all baffled by my functionality. I told my primary pulmonologist I am from Pluto, and he agreed because a normal human should not be functioning as well as I do.

According to all my doctors, my combination of issues (sarcoidosis of the lungs, sarcoidosis of the heart, class three heart failure, secondary pulmonary hypertension, and a PFO that has not sealed completely, should make anyone almost incapacitated, even at my “young” age of 48. The doctors all say that I should need oxygen at all times, and pretty much be unable to do a lot of things.

Admittedly, if anyone were to see me that does not know of my condition, they would never guess I had anything wrong with me. I walk pretty briskly (on flat ground), and I look normal. I have been on prednisone for four and a half years now, and the only side effect (other than the occasional crazies) is weight gain. I have put on 30 pounds over those years, which I am told is remarkable because some people “blow up” to over 100 pounds of weight gain in the first year. My answer to that is what my sarcoidosis specialist said to me: “Prednisone has no calories”. In other words, although it’s hard, just control your eating. Luckily I never got any of that puffy face or buffalo bump on my back which can also be prednisone side effects. My combination of medicines sometimes plummets my blood pressure to 88/52, but I don’t get dizzy. For the level of severe scaring of the lungs from sarcoidosis, my lungs always sound crystal clear. According to the doctors, they should sound like plastic grocery bags rubbing together, and they are all baffled.

What it all boils down to is that I have portable oxygen, and I am not using it enough. I strictly only use it when I go to the gym and for hikes, but as explained to me, my culmination of issues is causing my blood saturation levels to plummet under other less strenuous conditions, like walking around in the mall. Over time, this lack of oxygen will have a negative effect on all of my organs, and in a few years to come, the shit is gonna hit the fan.

I really find it a hassle to walk around with my oxygen, although it’s a lot easier now that I switched to the smaller, lighter and longer lasting liquid oxygen pack from Helios. I admit that there is a bit of self-consciousness there also. People do tend to stare when a “younger” man has an oxygen pack, but my beautiful wife says she is not embarrassed with me having the pack when we are out together, and that’s all that matters really. Better to have the “hassle” of taking my O2 with me everywhere than the complications of oxygen deprived organs in years to come.

Composed using WordPress for BlackBerry.

2 Comments Add yours

  1. The seeming disconnect between strcutrural damage from Scd and functional impairment can be enormous. My wife had a routine chest CT to monitor the lung changes from her Scd and we had an urgent phone call after to go and see her consultant, after further breathing tests. He was astounded; based on the CT he was certain that steroids were indicated, but the breathing tests were excellent “those of an athlete”. So we held off steroids, whereupon she went down hill over 12 months with Scd spreading to other organs! Life, eh?

    (PS She is now on steroids and much improved!)


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