High altitudes

[ERei]

Does anyone know if it is dangerous for ppl with PV to take a trip to areas that have a high altitude ? I'm thinking of taking a vacation to an area of Italy with an elevation of 6,000-9,000'. My local hematologist says it's fine but he's been wrong about so many things. I don't see my MPN doc until March & the deposit is due in Feb. TIA

[hunter5582]

I expect your hematologist is right about this one. I would not think that is particularly risky. You might see a rise in RBCs if you stay there long but it will be temporary. There are people with PV who live in higher elevastions. This just becomes a factor in maintaining their HCT at target, which does not change based on where you live. I would ensure that my HCT was not nearing 45% before traveling to any higher elevation for any length of time but would not do anything else.

If you think your local hematologist does not have the MPN knowledge you need, suggest you consult with a MPN Specialist periodically to ensure you receive the care you need. mpnforum.com/tsr-the-list/

Happy travels.

[ERei in reply to hunter5582]

Thanks Hunter for your reassuring response. I've tried 4 local hematologists since I was diagnosed 5 years ago & have not found any that are knowledgeable in regards to PV so I gave up! None of them believe in doing a BMB or any of the Rxs. Three of them were adamant that PV is not cancer! I finally started seeing an MPN doc at Weill-Cornell 3 years ago that has made a huge difference. The problem in this situation is that my appointment with him is too late to get this question answered & I don't like to bother him unless it is absolutely essential.

[hunter5582 in reply to ERei]

I would send a message in the patient portal to the MPN Specialist. It is not a big deal and would likely give you some reassurance.

Enjoy your trip.

[C_Anne_Orange]

Hi ERei -

I can't really answer the question for you, and you should really try to touch base with your MPN specialist, but I have PV and when I'm at high altitude, especially 8000+ I am uncomfortable and try to avoid over 6000. Even before I had PV I was uncomfortable at high altitudes, 13000 was my limit (MANY years ago and before PV) and I did not enjoy it. When I fly any distances my MPN specialist makes sure my HCT is under 42, and if it is borderline, they recommend a therapeutic phlebotomy before I go. Good luck and hope you can enjoy your trip, sounds like a lovely area!

[yibberat]

I have PV (including an HCT in the low 60's which is still being moved downwards since I was only recently diagnosed) and live at mile high altitude in Colorado. Nothing about Denver has ever been a problem for me. It does take time to adjust to altitude - esp in winter when it is dry and hence also nosebleed prone which could also be the case for your vacation - and until then sleep can be fitful with an occasional need to take a big breath.

At a mile high, there is 17% less oxygen in the air so you definitely do not want to push exercise too much too quickly. But that is the case even if you don't have PV and are an athlete. It's why the local Denver teams take full advantage when they are playing at home - and why athletes train at altitude in order to 'acquire' more efficient blood cells. I'd guess a 12% per day adjustment - so 36 hours or so for Denver. I have stopped skiing at higher altitudes over 12,000 and climbing the 14k (43% less oxygen) summits. For me 10,000 feet (35% less oxygen) was the limit for a 'good night's sleep' (fitful and an occasional headache) even before I was diagnosed. Likely a bit lower now.

[IKEALover]

I don’t know the verified factual answer, but as for me I’d never risk it. Doctors are often wrong more than they’re right; they only know so much, they’re not God. Best of luck.

[ERei in reply to IKEALover]

That's for sure! I have asked the same question about natural immunity to RSV to 4 different docs & gotten 4 different answers! My MPN doc & local hematologist never agree! I only hang on to the local hem in case of emergency as my MPN doc is far

[monarch5000]

I would advise against it since you have no prior experience knowing whether or not even 4,000 feet above sea level would cause problems like rapid heart rate, shortness of breath, generalized physical weakness and malaise.

I have PV and one of the ways I discovered even 5,200 feet would make me feel ill, even though my blood counts are well controlled with interferon, is that during a flight from California to Omaha, Nebraska the plane briefly stopped over in Denver and while sitting in my seat, as the plane was about to land in Denver, I experienced rapid heart rate, shortness of breath and generalized physical weakness and malaise. It was horrible and there was no escaping from it other than waiting for the plane to take off again and land in Omaha which is only 1,060 feet above sea level. Since then I have avoided altitudes over 3,000 feet.

[ERei in reply to monarch5000]

Sorry to hear of your experience. Thanks for your response

[AnPV]

Hi ERei, I have PV and there are no heights where I live. I went to Austria this summer and was staying at an altitude of 5.200 feet. I have been hiking at 8000 to 10.000 feet. I experienced no problems whatsoever. My hematologist was not worried at all. She said it could become a problem at a height of 13.000 or more. If you decide to make the trip, enjoy it!

[Sprat19]

I have ET diagnosed after a Skiing holiday. So flying and altitude.at 3000 metres Developed an extremely painful discoloured toe. Causation , correlation, coincidence? Anyway skied plenty since on aspirin no issue.

[Lena70 in reply to Sprat19]

I was diagnosed after spending two weeks at high elevation in the Colorado Rockies. I used to live in Salt Lake City at 5K and regularly hiked and skied in Utah with no problems. On the fateful trip, I struggled and felt exhausted 24/7.

[Blucloud in reply to Sprat19]

Did you have the toe diagnosed?

[Sprat19 in reply to Blucloud]

unfortunately not. At the start I wordered if it was broken which would have led the medics down the wrong track. X-ray was normal. Then skin started peeling so treated antibiotic no help. But did result in bloods which showed raised platelets. The pain was great and something in me said thrombosis. I put myself on aspirin and almost straight away it got better. Of course by the time I saw a haematologist there was nothing to see and 15 years later I have never had a repeat.

[Blucloud in reply to Sprat19]

Thanks for replying. I had the same with my big toe after much walking when visiting Chicago. My doctor said it wasn’t gout and diagnosed it as caused by my toe repeatedly hitting the inside of the shoe. Perhaps she was right, but at the time, I felt unsure.

[larka13]

I had the worst case of altitude sickness in Santa Fe, NM at 7,000 ft. I'd been there before and never got sick. This time I had PV. Don't know if that made the difference.

[Treeah]

Hi ERei, I have had PCV for 4O years. My ability to handle high altitudes has become more challenging over the years. I use to go to Colorado twice a year to visit family and also had to fly for work several times a year. I fly best when my hct is below 42. I take baby asa in am and pm, no sugar before or during flights (It thickens the blood) and I drink a lot of water before and during flight . If I start getting sick in high altitude places, I take 2 tsp of organic black strap molasses as it is rich in iron and immediately helps me oxygenate. About 10 years ago, sixty minutes had a show on how airplanes maintain oxygen levels in alignment with cabin pressurization. The higher a plane goes, it is supposed to add more oxygen however, it is never brought up to what is normal and some airlines “skimp on o2 to save money. People have had strokes from diminished cabin oxygen, and PCV puts us at a greater risks for strokes and clots in situations like this. The last time I went to the mountains, I was extremely challenged and got elevation sickness and had to get an IV. This challenged my immune system for a good month. I have had PCV a long time so am more restricted as I age with it, but this dis-at-ease has taught me alot lot about myself and health! Best wishes to you.

[ERei in reply to Treeah]

Thanks so much for your response!

[Blucloud]

I have PV, take baby aspirin and hydroxyurea. Last September, in my mid 70’s, I visited Cusco, Peru which has an altitude of 11,150’ This was a new experience for me. My hematologist had given me the ok and my blood work was good before I left. I experienced some altitude sickness which lessened after a few days. It consisted mostly of feeling tired. The main thing I noticed was the difficulty walking up inclines. I was with 5 other "seniors" (69-79) who did not have an MPN and everyone experienced it differently. There was a fair amount of walking, but no onerous hiking. We all got so much from our trip and we’re glad we went, despite our initial fears. That said, you need advice from your doctor, preferably an MPN specialist. I’m just relating my experience in case it’s of interest.

[ERei in reply to Blucloud]

Thank you Blucloud!

[Bluetop]

I can only speak from personal experience but I did check with my haematologist before travelling to high altitudes a few years ago and she said it would be fine -and it was for me!

[ainslie]

I would definitely e mail or contact your doc at Cornell, your question is a very valid one and that’s not “bothering” them