I was newly diagnosed with "mild PH" due to sleep apnea. Systolic pressure, measured by right heart cath, was 55 while mean was 33. I reacted well to nitric oxide during the cath., with mean pressure going down to 26 (systolic went down to 40, I believe).
I have "mild" sleep apnea, based on sleep study, but also showed desaturation down to 79% at its worst, and have just been put on CPAP machine.
My doctors have told me the following, for which I would like your opinion:
1. Based on my numbers, the PH is on the mild side (they are using the mean as the relevant number - is this correct?).
2. My long-term prognosis is good
3. Treatment plan is to determine the extent to which the CPAP reduces my lung pressure (am told that CPAP can possibly reduce my pressure to normal levels - is this correct and if so, what is the likelihood and appropriate time to allow this treatment to work?); then start calcium channel blockers, if advisable, after determining efficacy of CPAP
4. Flying and moderate exercise okay
I am 45 years old, male, very fit, and not overweight; I exercise regularly, but do have shortness of breath climbing stairs, etc.
Based on the foregoing, what are your thoughts about my condition and treatment plan? Hoping for some reassurance, here . . .
Based on the information you provided me, it sounds like you DO have pulmonary hypertension and I agree that it appears to be relatively mild based on the numbers provided. However, what is not clear is exactly WHY you have PH.
1. Sleep apnea can, indeed, contribute mildly to PH but you MUST undergo a thorough evaluation (I saw your second post which was helpful) but there is information not provided that would be helpful to know such as whether or not your doctors measured an LVEDP (or a pulmonary capillary wedge presure). I would also like to know what your cardiac output is.
2. If you have confirmed sleep apnea, than I completely agree with being treated with CPAP. However, I do NOT agree that you should necessarily be treated with Ca channel blockers despite your encouraging response to nitric oxide. I''m not saying that you certainly should not be given this medication but this is a medication reserved for a select group of PH patients and I suspect that you do not fit into that category.
3. Are you being evaluated/treated at a center that specifically SPECIALIZES in PH? If not, I would encourage you to do so. If you happen to be in the chicagoland area, I would be happy to see you.
4. Agree that flying and exercise at this stage are likely to be generally safe.
Hope this helps. As I always tell the posters on this forum, there is nothing more important than ensuring that you are receiving expert care. Most doctors out there are very well intentioned but that is not an assurance for excellence.
Dr. Rich: Thank you for your response. If I may, some follow-up questions and replies:
1. I do not know whether the wedge pressure and cardiac output were measured. If not, should this be done and how will the results inform a doctor's judgment?
2. Why do you suspect I would not fit into the category of patients to be treated with calcium channel blockers? If not those drugs, what other drugs would you consider?
3. Based on CT scan, blood tests, endoscopy results, x-ray, etc., the doctors I have seen attribute the PH to the apnea. One is at NIH, one in Baltimore (William Krimsky), and one in DC. The NIH doctor specializes in sarcoid, while the other pulmonologists treat PH patients. Do you agree that the apnea might be the cause?
If you have referrals to PH specialists in the DC or Baltimore areas, I would welcome them.
4. Do you agree that treating the apnea may normalize the pressure and, if so, how long should I treat the apnea before a reduction in pressure might be seen? Do you think it necessary to start drug treatment now, or wait until we see how the CPAP affects the PH?
5. Other tests mentioned, to be conducted at some point in the future, may include a high res CT scan (to further rule out clots, but doctors have no reason to suspect I have them),VQ scan (although I understand there are different schools of thought on this), and a repeat of 6 min walk test (I walked far but desaturated to 86%). Thoughts?
6. Long-term prognosis?
Even mild PH is unfortunately fatal. However, given your stats you may very be looking at much better prognosis then most people w/ pH. My sister recently passed away from PH that started very mild (mean 29). She was originally told her life expectancy would be between 3-5 years. She survived nearly 7. Good luck. Sorry for your DX.
First of all, please ignore the post by johnjay535. While I sympathize greatly with the loss of his sister from what was likely "PAH", and absolutely terrible disease, this was a terrible post and highly inaccurate and frankly ignorant.
At Johns Hopkins, I would recommend either Paul Hassoun or Stephen Mathai (and please say hello from me if you end up seeing either of them).
All of your questions are reasonable and should be asked of your current physician.
I suspect that you are going to be ok in the long run. But you need an thorough eval, diagnosis, and treatment plan.
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