Bugster2 wrote:Crybaby, do they know what caused your PH? I have only known two people who had it: one got it from using that diet thing called Fen-Fen. The other was a kid of 30 who's PH was genetic in origin.
They
think it might be because of the sarcoid I had in my lung back in 2007 but they're just surmising.
The CDC says: Pulmonary hypertension can occur in association with many other diseases such as lung disease and heart disease. Some common underlying causes include pulmonary arterial hypertension from some types of congenital heart disease, connective tissue disease, coronary artery disease, high blood pressure, liver disease (cirrhosis), blood clots to the lungs, and chronic lung diseases like emphysema. Genetics also play a role in pulmonary hypertension. Pulmonary hypertension occurs at all ages, and the incidence of it increases with age. Pulmonary hypertension is more common among women, non-Hispanic blacks, and among people aged 75 or older.
I had a disease in my lungs (sarcoid) that was diagnosed in Fall 2008 that some doctors think may have been my lucky ticket to this parade but they really don't know for sure. The sarcoid came back around 2011 but not in my lung but rather in my skin; it can affect any organ in the body I'm told. I've also read about heavy drug users, particularly those who have problems with cocaine, developing PH. My doctor has patients aged 8 to those in their 80s (I'm 62).
Only about 300 people a year are diagnosed with it in the U.S. but then it often goes undiagnosed. I've read different numbers ranging from 300,000 to 800,000 as to the number of people in the U.S. currently diagnosed with the disease. I don't read too much about it as it's never good news and says deaths are increasing from it in the last two decades, particularly among women. The fact that I need oxygen at night now is not exactly good news, but rather indicates that my heart is becoming more damaged. My doctor is trying to get me on the list of those waiting for a double lung transplant. Believe it or not, if I get two new lungs, I will no longer have the disease and my heart will repair itself -- that boggles my mind about the heart repairing itself. But there is an age cutoff -- might be 65 -- though she wants the transplant doctors to meet me. I think so they can see I'm still living a very viable life and am not half dead and in bed 24/7. In other words, I present as a "young 62." My PH doctor specializes in both PH and in transplants and the hospital I have to go to receive treatment is the local hospital that does all the organ transplants. I'm far from crazy about the place but it's nice to know they're so experienced with transplants if I can indeed get a set of lungs. If my heart gets worse, a heart and double lung transplant is also a possibility if they think I'm healthy enough to have that surgery and the three organs would become available to me. I recently met two people in the hospital -- one in her late 30s and another in his mid 20s -- who had double lung transplants due to PH. The follow up care of yourself is pretty life changing but it sure beats the alternative. The guy in his 20s missed having cold cut sandwiches as you can no longer have cold cuts. I had to laugh, as we all want what we can't have....
Sorry if this was too much info, Debbie, but I know people are curious about it, as they rarely know anyone with the disease. So I figured I'd give you guys some info about it since you asked. Prayers are always welcome, BTW (big grin)!!!
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