I had an abdominal aortic aneurysm (AAA) repair, thrombosed, not burst, in 2001. While I was recovering, protein was found in my urine and upon investigation I was informed that I was suffering from idiopathic globular membranous nephritis, an incurable disease. Thirty-three percent of patients recover spontaneously, 33 percent are stable with drugs for life and 33 percent lose their kidneys.

I was in the last group and in 2006 my kidneys failed completely. I started dialysis in a very weak condition.

I was a smoker for about 45 years and had a mild case of emphysema and used oxygen on occasion.

My primary care physician advised that I start regular pulmonary therapy exercise and so I did, three days a week. Life was sweet with only dialysis to be boring and time consuming.

On January 7, 2008, I first had difficulty completing my exercise and it continued. Also, I now needed oxygen 24 hours a day.

I sought the opinion of the medical community and it was suspected that it was caused by sleep apnea, which I had been tested for a year earlier, with negative results.

They insisted and I went through another sleep study and this time it was positive. But the doctor prescribed the wrong type of machine and it took a long time to get it sorted out. Finally they prescribed a VPAP ASV machine and except for mask fittings that has been a good thing.

But my strength was decreasing weekly. I quit exercise altogether as I just could not do it.

I had lung scans: negative, X-Rays: negative, echo cardiograms: not definitive, chemical stress tests: negative, and finally a physical bicycle stress test that indicated severe oxygen problems. This was followed by a right heart catheterization which showed that my pressures were high. The diagnosis was PPH, idiopathic again. This was in August of 2008.

I changed doctors and got a PH specialist at UNC where I had been on the kidney transplant waiting list, but with PPH I was removed as a high surgery risk.

I am now satisfied with my medical staff and don't expect too much.

I am back on pulmonary therapy and some days I can do it and some days not. Often my blood pressure goes to 80/_. No reading for diastolic.

My meds and machines are:

Oxygen 24/7

Sitting 4l/m

Walking 6l/m

Sleeping 3l/m

VPAP ASV machine for sleeping

Tracleer

Lipitor

Renal vitamin

Tums for phosphorus removal w/meals

Dialysis diet

Epogen

Vitamin D

So really not much, but I suppose that I will get another PH medication next week at the next appointment.

I am an active advocate for dialysis and diabetes education and have visited both state and federal representatives for various Medicare and Medicaid bills and issues.

I am not active in advocating for PH. I have volunteered, but it seems that NC is not a hot bed of PH.

So I just do what I can and will continue as long as possible.

God have mercy on us all.