Air travel with low counts, any helpful ideas?

[Meri T.]

Hello everyone,
My brother is a match, my transplant is set for mid-April, but before my SCT, I will need to fly out of the country.

My flight is a bit long, Tokyo- San Francisco non-stop. Then flying back SFO-Narita again in a few weeks time. My hematologist has booked me for a transfusion a day before I fly, because my counts are too low : WBC 1.4, RBC 2.94 and especially Plts 22 only.

Besides low counts, I have joint pains, fatigue and diarrhea - I know, I shouldn't be flying right!? But it's a visa thing so I have to. To those brave hearts who have gone before me:

- Could you tell me your symptoms while up in the air? (I'm imagining dizziness, heart palpations, out of breath, swollen feet...)
- What did you bring to alleviate your symptoms? (a pillow maybe? headphones? some food and drinks?)
- and other questions I should be asking????

I've searched through this forum in the travel with low counts, and came up with an important detail, having a prescription to go with the meds is a recommended when going through security check points.

Actually I haven't flown since 2011, so please, just throw out your ideas, they might be more helpful than you think!

Meri

[Marlene]

Meri,

You may want to think about having transfusion orders from your doctor too just in case you need transfusions when you get to your destination. Also, line up in advance, a local hematologist at your destination point. Your doctor can send any records or orders to them in case you run into issues while traveling. If you can't get a local doc in advance, then scout out a clinic when you arrive. You'll be there for two weeks and it may be a good idea to have your levels checked before returning.

Think about wearing a mask during your flight and also wipe down the tray table and seat arms with an antibacterial wipe.

HGB is the best way to assess red cells. What is it now and what is the target goal your doctor wants to get to before your flight? If you get to a 10 or above, you should be fine.

[tytd]

My hematologist says it's OK to fly with my platelet count below 20k but I've always been afraid of the possibility of cerebral hemorrhage or nosebleeds. It's probably an unfounded fear but also would like any advice from others out there that might have flown with very low platelets and low Hemoglobin. Thanks

[Hopeful]

Hi,

I had flown across country the week before I was diagnosed with pancytopenia. My platelets were in the teens and HGB <10 at the time.

I used to take shorter flights to see my specialist after diagnosis when all my counts were low. I would wear a mask then because i knew better!

I didn't have any issues with flying, but would defer to your doctor for their opinion on whether it is okay for you.

[Charo]

Hi, I had to travel internationally after diagnosis with pancytopenia in order to receive treatment. The doctor gave me extra whole blood the day before and a double dose of platelets about an hour before the flight as they disappear so quickly. The risk of infection is high so bring lots of antibacterial wipes. I arranged for a wheelchair to transfer as the long walks between gates can be exhausting when levels are low. I agree with the advice to have medical care cued up on arrival, too. You are likely to be extremely tired.

[Meri T.]

Marlene,
Thank you. My hemoglobin level is 9.8, just below the 10 point limit airlines have.

I've google searched some hematologists and will ask my sister in law over there to find a local clinic should I need a transfusion before heading back.

As for the transfusion order from my doctor here, I'll try to get it if possible. Thanks for the heads up.

This is a long shot, but does anyone know of a hematologist/center in the Milpitas 95035 area?

Meri

[Hopeful]

Milpitas is near Stanford University. I'd recommend the expertise of Dr Peter Greenberg or Dr Jason Gotlib there.

[Meri T.]

Charo and Marlene,
My platelets are falling, now at 22 so according to the trend, I'm predicting before I fly they will be somewhere around 16 and going lower after every blood test. My doctor said that platelets <10 will cause internal bleeding, so he wants to raise my plt counts before I fly.

I will get a transfusion on Thursday, then fly off on Saturday, so I guess I will make it through the flight. Once there, I'll prepare myself for the flight back!

Anti bacterial wipes, check.
Mask, check.

This forum is great. Thank you.

Meri

[Meri T.]

Hopeful, thank you. I was thinking more on the lines of local hematologist for a count check and transfusion to boost my counts should I need one before flying back. But driving up to Stanford could be just what I need.
Meri

[Meri T.]

And I came back from the US in one piece. The most exhausting part was not the 10 hour flight, but the long queue at Immigration, and the few days of jetlag.

Some suggestions from experience:
- Not only wear a mask on the plane, but change the mask regularly.
- Wipes. I used up the whole box during my stay, especially while eating out. Most restaurants did not have wet towels, even though they were serving finger foods or spring rolls which you eat with your hands.
- Platelet transfusion. It is amazing how many times I bumped into things. When you go to unaccustomed places, and especially jetlagged, it is so easy to trip, fall or bump yourself. So slow down a bit while travelling.
- Try to keep track of medication by taking them about 6 hours apart instead of relying on morning, afternoon and evening. It's so easy to miss a dose while you are sleeping off the jetlag.

I have a blood test this Monday, let's see how many points this trip has cost me.

An aside, fun as the trip was, I was quite frustrated at being told by close friends and relatives, Oh so you don't have leukemia or cancer, you only have a blood disorder, some syndromes. Or being dismissed, so you have a match, you'll be fine.

I think most of you have experienced this form of sympathy from family and friends. I chose only to tell very close relatives and my two best friends only.

Keep well everyone.
Meri

[Barb M]

For many years I have used an air purifier for airplane travel as well as anytime I'm in a crowd and hear people coughing or sneezing. It has worked extremely well and my ANC very seldom goes above 1.0.

Had a "healthy" friend who took a trip to Europe and she purchased the AirTamer 302, wore it in the airports and on the planes. She was the only person out of 30 on the tour who was not sick at the end of the return flight. Up to now she has always been sick for a couple weeks after any intl flight.

[Cheryl C]

That's interesting info, thanks Barb. I've ended up with an infection of some kind almost every time I've traveled overseas, though not necessarily from the plane flight. Like you, my ANC is rarely above 1.0 (it rises only when I have an infection). I know about and have used masks. I didn't know there was such a thing as a wearable air purifier.

[Meri T.]

Barb, thanks. The air tamer really is a great idea. I didn't even know that it existed.

My blood counts took quite a beating after the flights.
These are the counts before and after flying.
23Mar -> 10April
WBC 2.1 --> 1.5
Plts 30--> 19
Blasts in per. blood 2.5(!)

Besides that, I have bruises all over, and my arms and elbow joints have been hurting. When my knees hurt and I couldn't walk so much, I used to cycle to get some exercises, but now that's out too since it hurts to steer.

What a disease. Whenever I think I've managed to catch up with my ailments, they up the ante.

Good thing, my donor brother is flying in tomorrow.
Happy Easter everyone.
Meri