Pulmonary Arterial Hypertension ~ Not Much Fun !by: Don Jones = Underdog~Heart-Transplant#189-Vanderbilt
3/25/11
I have not written about my Pulmonary Arterial Hypertension(PAH) lately. Not much to write about. I do suggest that you click on the link above and read the latest in regard to advancement and new treatments. I know, that my lips still turn purple along with my finger nails and extremities. It is a characteristic of the disease itself. I do not go back to Vanderbilt Pulmonary until July., Dr. Anna Hemnes is doing all she can do to keep me up and going. There just isn`t a lot they can do. I seem to be a little worse. My feet and ankles are now swelling. I have my good days and bad days. I`m on oxygen 24 hours seven days a week, supposedly ! My SPO2`s> Oxygen levels, stay constant. They run about 73 - 86...normal is around 98-99. Then, when I walk a short distance, say 50-75 feet. I get short of breath. my (SPO2`s) go down to 58-65. I am still trying to exercise on my treadmill and bike. At times, I can actually do those, better than just walking. I`m doing 15 minutes on treadmill and 15 minutes on stationary bike. Now, I do not break any world records. I do about 0.350 mi on treadmill (1/4 mile) and then 1.75 mi on bike(1 mile & 3/4) Not too shabby for a guy with a Heart-Transplant and PAH ! Just let me reemphasize (Shortness of Breath) is not much fun ! At one time, I loved to take a shower, I looked forward to it, almost like a kid looked forward to ice cream. no longer is that the case. Taking a shower at times can be a nightmare. It is one of the most difficult things I do now ! I dread it ! Hey, ya gotta do it ! I try to stay positive. At times it is very difficult to do. I still take Tyvaso and Revatio for this disease. Is it helping ? I`m not sure.
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