I am Diana, 54 years old with PH secondary to interstitial lung damage secondary to scleroderma. I was diagnosed with the scleroderma about 3 years ago but had some CREST symptoms as long ago as 12 years with my esophagus now it is full blown and progressing rapidly. I was diagnosed with PH 1 year ago this month. it has progressed to class 4 and I am on Flolan along with Revatio and lots of diuretics, digoxin and pain meds for the scleroderma. I take 14 pills in the morning..... a few more about 2:00 and then 10 at dinner time. It is very hard to type this with my painful crooked fingers but I fell it is important to share my story with others so they can be encouraged.
I love Jesus and was a church secretary for 15 years at our church. I retired Dec. 08 and went on SSD. That is something I should have done months before I did but I just didn't want to "give in".
I do not drive any more and can only walk around in the house with my o2 on 5 l/m so I cannot walk to the car or from the car to a store or anything like that. I have a wheel chair and a jazzy power chair and someone goes with me everywhere I go outside the house. MY husband is a truck driver and owns his own truck and gets his own loads and is gone quite a bit so Ii am at home on my own in the afternoons.... I have caretakers in the mornings for Flolan stuff and giving me a shower which I cannot do on my own any more. This all has brought my h usband and I closer together than we have ever been. The Lord has been by my side holding me up through all my down times and good times as well.
I am so thankful for everyone who has encouraged me and filled me with helpful info on the PH web site
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