Visit to PH doctor today

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by , 11-02-2011 at 02:09 PM (452 Views)
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!
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  1. purplemem's Avatar
    I got this test done, doctor confirms the CPAP is working. My oxygen drops into the 80s at night which is why I still feel tired.

    Next week I have some kind of pulmonary effusion tests, looking for peripheral blood clots and scar tissue, requires admittance to hospital in the BIG town.

    Used my wheelchair today when I went out and it helped my stamina but still came home and took a 2 hour nap. Headed to bed now.
  2. purplemem's Avatar
    Went out today and shopped for groceries. Was not able to stand for very long, but all the getting in and out of the car did make some exercise. I guess I walked at least a 1/4 mile total today. All the steps do add up.
  3. purplemem's Avatar
    I'm feeling better today. I did a lot around the house, was able to keep my food down and walked very moderately around the yard. I am interested to see what the Pleural effusion test will identify and then to confirm if I can increase my exercise or if it is still a "bed rest" situation.

    The days I feel good I want to "stretch myself" but the days I feel bad I just want to practice breathing. I wish there was a happy middle.

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