Who here has Pulmonary Hypertension and how do you manage it?

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During my transplant evaluation last year the doctors found out I have pulmonary hypertension (the pressure on the valve should not be above 25, mine is 29).
At the time they said everything was okay with my heart and strangely it wasn't until my most recent appointment (last week) that mt doctor mentioned I do have this problem, in passing.

He said the only known way to manage it and stop it from progressing further is to be on oxygen 16 hours a day, including during sleep (I was already on it during sleep and exercise, so it isn't a huge stretch).

I am a little surprised that they did not see this as a big deal especially when I read about PH online and how serious this seems to be.

As a side note, I am not on the transplant list yet. Even though I do get very tired during exertion and my O2 saturations drops to 80%, it goes back up to the 90s within a minute. I used to think the saturation dips were due to CF but I think it might be more the PH. I am not sure.

So I would be interested in hearing your experiences with it.

Thanks in advance for any input!
Vera, 31

 

[Melissa75]

I'm replying to bump your thread. Hoping someone will see it and have input.

It is interesting to me, too, as I was dx and then un-dx with pulmonary hypertension. There was nothing abnormal/enlarged with my right ventricle--no signs of right-side heart failure--so that was also reassuring along with the normal re-measurement I had. I think as PH advances, it becomes evident in the heart that way. Maybe your doctor doesn't see these signs in you yet either?

I hope you get some replies.