In late 2002, I went out to Colorado and never adjusted to the altitude very well. I started feeling ill and went to a doctor who said I had double pneumonia and severe altitude sickness. I was sent home and had oxygen delivered. I left Colorado two days later and headed back to my then home in Maryland.
A few months later, I had a physical and the lung x-ray showed bulbous air sacs. I went to a pulmonologist who said I had emphysema. Since I was never a smoker this was baffling, and plus at the time I was only 40.
I moved back to NY in early 2004 and went to see a pulmonologist up here who said he didn’t think it was emphysema. He sent me for a bronchoscopy, which didn’t go very well as I am resistant to anesthesia and tried pulling the tube out my throat, so they were not able to get a biopsy. The doctor recommended a lung biopsy instead.
I didn’t like that pulmonologist very much (terrible bedside manner), so I went to see another. The new pulmonologist had a great bedside manner and listened to me. He also recommended a lung biopsy as he suspected that it was Sarcoidosis.
I was hesitant to do any surgery, and resisted, but eventually had the open lung biopsy done in 2006. That was the most painful surgery recovery I ever had (Read my post on “Open Lung Biopsy – My Truth“). The biopsy proved positive for sarcoidosis, and my lung x-rays showed that the lungs were very scarred, so it appeared that I had this for a while.
I was put on Prednisone at a high dose and then eventually tapered down to a medium dosage. Over the next year I was up and down on prednisone and was eventually stabilized at about 20mg
At the end of April 2007, I was put on a new medication. On May first 2007, I awoke at 5:00 am and my entire right arm was lifeless. There was no feeling. I literally picked it up and it flopped like a rag doll. I thought it might be that I had slept badly on the arm, but I had awoken on my back, not my side.
I sat there for a few minutes, not panicking but wondering what the hell was going on. Just as I started to get worried and was about to wake my wife, the feeling slowly returned and I went back to sleep. Later that morning I told my wife and she insisted I go see the Pulmonologist in case it was a reaction to the new medication.
I did go and he dismissed that I may have slept badly and prescribed a bunch of tests – MRIs, CT Scans, Blood tests and a full cardiac work up. Everything came back normal. Then my pulmonologist asked the cardiologist to do a T.E.E., A Trans Esophogeal Echocardiogram. That’s where they do the echo from the other side of the heart. It requires anesthesia and them lowering the echo device into your throat. And my pulmonologist’s suspicions were proven correct. I had a PFO, a patent foramen ovalae, or hole in the heart. The hole was a birth defect never picked up by anyone and likely allowed a small clot to pass through and cause a TIA or mini stroke.
I went to Mt. Sinai to have the hole plugged via a catheterization. Before the procedure, the surgeon asked if they could do it under general as the operation is usually done while awake. He said they wanted to do a complete test of the heart as they were there. I thought it unnecessary as they did a complete work up of the heart just over a month before, and it was perfectly normal except for the hole, but I agreed.
When I awoke the doctor said it all went well, the hole was plugged and in time, heart tissue would grow over and form a complete seal. However, there was another problem. The heart function was seriously low and I had heart failure. My output was low enough to justify them implanting an AICD, a pace maker/defibrillator in my chest. In just over a month, Sarcoidosis had become active in the heart. I was told that if I didn’t have that TIA and all that happened subsequently, it would have probably gone undetected and I would be dead in two months.
I have since developed pulmonary hypertension in addition to the sarcoidosis and heart failure.
Some days are challenging, but everyday I am grateful to be alive. I write this blog for other Sarcoidosis sufferers to get some information and I hope in some way, my experiences help just one person.
** UPDATE JANUARY 2011**
It is now 5 years of being on Prednisone and I have developed pre-diabetes. I am working on eliminating that condition through diet.
** UPDATE NOVEMBER 2011 **
I have been able to get out of the pre-diabetes, mostly through diet changes, although I still do need to lose some weight. I am now on oxygen therapy, which was eventually expected due to my secondary pulmonary hypertension. I use 2L for sleeping, and do need to use it now for any activity, also at 2L. Exercise requires 3L.
It is a lifestyle change, walking around with portable oxygen, but I am now getting out of being self-conscious about it and realize that it is there to help and me and keep me alive longer.
My Sarcoidosis is once again active in the heart, the results obtained by a PET scan. Doctors have not decided how to proceed from here. I will have a echocardiogram soon to see what the heart’s output is, and then they will decide on treatment form there.