purplemem

Today was bad news. The doctor said he thinks I have Pulmonary Venous Hypertension, which is now being discovered as another diabetic disorder related metabolic syndrome. The bad news is there is no effective treatment for it. The treatments that are helping PAH, Pulmonary Arterial Hypertension actually make PVH worsen. Where does that leave me?

I really don't know. Untreated PH leads to CHF very quickly. All I know is that right now it is miserable to breathe, I stay exhausted.

Medicare requires a daily O2 level of 88 or less, mine is currently averaging 93 to 95 in the daytime, which leaves me breathless at the slightest effort (showering, etc.). At night my stats drop lower.

I am scheduled to have a telemetry oxygen sensor for the next few days. Although I brought the prescription at 11 this morning to the hospital office, and they confirmed they had received the fax, I am going to bed tonight without the device or the tests.

What the heck, it's just my life! Right??!!

If I go around medicare and pay for the oxygen on my own, I can't afford prescriptions or doctor visits. I am definitely in a catch-22. Arrgghh!