Treatment regime is (was) daily low dose aspirin and weekly injections of PEG at 46ish units.
To my understanding blood clots from flying are a "risk factor" but I was under the impression it was pretty manageable. Drink lots of water, make sure to move/stretch legs, compression socks for long trips.
I've had two trips to Houston, TX since the end of June. No direct flights so each leg is about 3 to 3 1/2 hours.....6h 15m total. Writing from the hospital today because this last flight had me running a low grade fever for 3-4 days with shortness of breath. Assumed it was just an infection ( which was part of it) but the surprise was a right lung containing "significant" PI's with almost complete occlusion of my pulmonary artery. WTF?? How is this a "risk factor" when I'm hitting 50% odds. I did everything right
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I just went to Europe three times over the last 2 years without any issues. I take my aspirin and get up to really use the bathroom and that is about it. The longest flights were 9-10 hours. And I have done shorter flights too. And planning a trip to Poland in December. My MD Anderson doctor years ago told me no restrictions for me at least for travel. Happy traveling!
I need to do a better job of reading the whole post! I am so sorry that happened to you. And hate you are in the hospital. Flying technically can be a risk for anyone. I am so sorry. Sometimes we do everything right and still end up with issues. But I hope you feel better soon.
Thank you KLCTJC and I'm happy your ability to travel hasn't been hindered. I've been put on blood thinners for the time being...whether they become a regular part of my regime will be decided by my MPN specialist when I see her. Without that change (or equivalent) I'd probably be hesitant to try to fly again as it seems I have a excellent capacity to form clots. Plus the Doc felt that they came from my pelvis vs my legs as I had zero evidence to support DVT.
My HCT was a little high at 46 so I went for a phlebotomy on Friday (flew Sunday) but it only brought me down one point. So maybe too high still? I dunno man......just so confusing & disappointing. I've already had to realign my thinking and life approach once with this stupid disease
This is very individual, the propensity to get blood clots when flying. There are other genetic mutations rather frequent in the population that also increase risk for blood clots (thrombophilia genetic testing can detect them), and combined with one having an MPN, it can increase the risk for having blood clots. Also, depending on the genetic mutation and other individual factors, one can have hyperactive platelets, and this means that even trivial stressors such as changes in pressure common when flying or a small injury can trigger these hyperactive platelets to form clots.
I did get several times the same blood vessel burst in my left calf after flying. The flights were short, 2.5 - 5 hours each, and now I am aware this is where I am. On top of ET, I have a genetic mutation relatively common in the general population suspected of increasing the risk for clotting, PAI-1 4G/4G genotype.
I hope your MPN specialist is open to discussing this with you. You should not be left on your own in handling all this.
Hi sorry to hear you are in hospital hope you will recover soon I haven’t flown since 2018 has I had a vain burst in my leg on fight going ended up having to go to hospital 3 times my doctor said some people just can’t fly I ended up coming home from Italy by train
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