I have pavm that is untreatable and am on the highest flow of oxygen outside of a hospital. My doc recommended that I move to a lower altitude. Has anyone had a similar recommendation?
Hi. I saw your post last week but hoped that others might answer you. We do not have many members in the @PulmonaryHeartHHT (and I don’t think being a member of a group alerts when you create a topic. I think alerts work if you create a private Message to a group) so you’re dependent on those of us passing by to offer a little help.
I’ve not read of PAVM people being advised on altitude, although it makes sense to me that it could help. I have read of people with brain AVMs having some advice on avoiding heights, especially during recovery post stroke. I think I’ve also seen mention of hyperbaric (= above atmospheric pressure) oxygen treatment post stroke. I think the reason is to ensure good oxygenation in the case of a stroke, to support good healing and reduce necrosis or the risk of necrosis. The reason being that if you’ve got poor circulation somewhere in the brain and poor oxygen absorption in the lungs, you might get a bit of necrosis going on if the nett effect is insufficient oxygen.
In your case, I assume your PAVM is rather obstructing oxygen absorption in your lung(s) and living at a high altitude means you’re effectively in a hypobaric climate (i.e. below normal atmospheric pressure).
Are you able to travel at all? Do you manage to get away on holiday? I can imagine if you’ve got hyperbaric oxygenation equipment that it is difficult to get away. If you are able to get away or do get away, have you found life any easier at lower altitudes / at the seaside? If it makes a difference in a week or a fortnight’s holiday, then it sounds like the right thing to do. If it doesn’t make any difference in a holiday, I’d be less keen to turn life completely over for little or no benefit. I’d need some more evidence of the value or understanding of how long a difference would take to realise.
Does that help?
Very best wishes,
Dick, thank you so much for the input. I agree with your suggestion to try lower altitude for a while and see if I’m able to get around without using so much O2. That idea makes perfect sense.
In the meanwhile, I’m getting appointments with other pulmonologists (mine has moved) to get their input and to answer some other concerns. Again, thank you so much for taking the time to respond.