|A Message From Aries|
For years I have had trouble with occasional shortness of breath. It was chalked up to asthma, and smoking. I visited more than one ER on more than one occasion, over a period of 9-10 years, and was always told the same thing “You have asthma. Quit smoking” .
In June of this year, 2012, after having the symptoms of my “asthma” continue to get worse even after having quit smoking months before, I went again to my primary care Dr. I had gotten to a point where I could not even walk across a parking lot without feeling like my chest was going to explode. I had thought that by quitting it would magically just get better. She ordered a chest x-ray. She called me a few days after and said that they found “spots” all over both my lungs. Of course my first thought was cancer. She told me that it did not look like cancer, as the spots were all over up and down both lungs. Then she ordered a CT scan. While waiting for the insurance company to approve the scan (gotta love the bean counters) I ended up in the ER again, with severe shortness of breath, and chest pains. In the ER they ordered an EKG and a CT scan. They admitted me that evening as my EKG came back abnormal as did my CT scan.
The next morning, one of the residents came into my room and told me that my CT scan had shown “impressive” damage to my lungs. Now Doctors use words like impressive in a whole different way than you or I would, as I was about to find out. He took me down the hall to where they had a computer set up and showed me the CT scan of my lungs. Impressive didn’t quite seem to describe what I saw. Where there was supposed to be lung tissue (he showed me what my regular lung tissue looked like in a small segment) there were only large empty spaces, or what looked like air pockets or holes. As he scrolled down through the image of my lungs, the holes got bigger and worse. Impressive, he called it. Downright scary as hell, I called it. I had gone into the ER thinking I might have pneumonia or an infection, not THIS. I am 39, what the hell is THIS about!?! Later that day my soon to be Pulmonologist comes in, introduces himself, and says “Hi! Your lungs are swiss cheese” He can not attribute all of the damage in my lungs to smoking, as the damage is catastrophic and something you’d see in a 96 year old man, not a 39 year old rock n roll singer. He did tell me, that I had made it a million times worse with years of smoking, and I might as well have been playing Russian roulette with myself. After a few days the resident Dr had me discharged. My pulmonologist ordered an echocardiogram to check for heart damage, and because of that test they found the Pulmonary Hypertension. I was put on inhalers like Advair and Spiriva while they ran more tests.
An appointment was made with a cardiologist, as heart failure was also suspected in the echocardiogram. The cardiologist ordered a right heart catheter. Again we waited on the insurance company. Again, I went back to work and tried to get back to life as normal. Again, I ended up in the ER with even worse symptoms, whatever this was it was getting worse and getting worse fast. The right heart cath was finally approved and done while I was in the hospital. My heart appeared to be pumping with enough force, however with a “disorganized” rhythm. The PH however was bad, and would not budge. After 16 days in the RCU they released me. They would not do the lung biopsy as the surgeon said it could kill me. I literally did not have enough lung left for him to feel safe doing the procedure. There was nothing left to do but medicate me for the symptoms, and start the ball rolling for a double lung transplant. This is where I am at now.
I am waiting for an evaluation with the University of Miami Hospital's transplant team for a double lung and possible heart transplant. This is a progressive disease and will eventually kill me without the transplant. Going back to work was a decision I made because I can't just let this take everything away from my life now. Every day is a struggle in some ways....I sit at my desk and wonder how bad do I need that glass of water, or that cup of coffee, or to use the bathroom because I just don't want to drag the oxygen tank with me or the walk to the kitchen seems so far. The medications have some nasty and painful side effects, my whole body hurts and I have "steroid issues" LOL. I keep on, however, because I am lucky to even be able to leave my house and go to work, and for that I am so grateful. There will soon come a time that I will not be able to. During the transplant recovery I will be unable to work or drive or really do much of anything for quite a long time. This is why I am so grateful for the support I am receiving, though the whole thing makes me so uncomfortable. I am just me, no one special or more deserving than anyone else. Those of you who know Jackie and I, know that we routinely donate our time and money to various organizations, and are used to things being that way. Not the other way around.
I was fairly certain in life that the last time I would ever need money from some one else would have been when I was 19 and homeless. Jackie lost her job the day I was discharged from my last hospital stay.. Life is funny some times...as funny and fickle as it is beautiful and wondrous. we must play the cards we are dealt and we don't always get a winning hand. I am not ready fold quite yet though.
To make a donation go back to http://www.ariesstead.com