Blood clots & flying

[originalmyndzi]

55F dx PV JAK2+ in early 2023.

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

[KLCTJC]

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!

[KLCTJC in reply to KLCTJC]

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.

[originalmyndzi in reply to KLCTJC]

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

[KLCTJC in reply to originalmyndzi]

I hate this happened to you. I am so glad you are ok though. Hopefully they will fix you up so you can travel again🙏🏻

[RoundTheWorld in reply to originalmyndzi]

I’m so sorry you took all precautions and still had clots. Hope recovery is quick. Glad you have blood thinners to reduce risk further.

[TTA_]

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.

[originalmyndzi in reply to TTA_]

I had no idea about these additional mutations and exponential impact on clotting risk, but I will certainly ask my Doc. Thank you for the insight!

[originalmyndzi in reply to TTA_]

As follow up, I've now been referred to a hematologist who specializes in clots/clotting at the Cancer Related Thrombosis clinic. First appointment is a 40 min phone consult. Any suggestions on what I should ask outside of these additional clotting factors you mentioned?

[TTA_ in reply to originalmyndzi]

If they do a full thrombophilia profile, both biomarkers (e.g., Antigen and Activity of Protein C, Protein S, AT-III, APCR, Lupus Anticoagulant, Homocysteine, Beta-2 Glycoprotein 1 (IgG/ IgM), ACA (IgG/ IgM)) and genetic tests for genes that can increase the risk for clotting, that is a good start.

Different clinics will have a slightly different list of biomarkers and genes for their thrombophilia profile, but many overlap.

I asked my hematologist and they were not calculating a risk score based on this information from the thrombophilia profile, but a thrombosis clinic might be able to do that.

Depending on the medication you take against thrombosis, and your experience with said medication and medical history, you can ask more questions aimed at that, for example some people can be aspirin resistant (but rarely tested for it), how would you fare with anticoagulants, as there are individual differences that make so that anticoagulants are not equally effective in everyone, some anticoagulants work better than others at individual level.

For me, I would make a list of goals and priorities and what is the most important for my health to get out of this.

These are some studies on ET and PV patients and thrombophilia profile and the meaning of some markers depending on mutation. Hope they help you prepare for the meeting at the thrombosis clinic.

sciencedirect.com/science/a...

ncbi.nlm.nih.gov/pmc/articl...

ashpublications.org/bloodad...

nature.com/articles/s41408-...

Good luck with your consultation! I hope you get the help you need to avoid clotting in the future.

[Poppy6060]

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

Poppy