Traveling Abroad with Sickle Cell

Question: I am a sickle cell warrior and I'm afraid to travel to certain countries like Ukraine or China. Help!

Okay, so I know that one of the main tenets of this blog is that sickle cell should not limit you. And I say that if you wish to travel to other countries, go for it. Just be sickle smart, plan and prepare for every eventuality.

Do everything in your power not to fall sick. Pace yourself, listen to your body, hydrate, be transfused before you leave your home base, avoid stress, get rest...you know, the usual sickle cell regimen. That way, should you get sick, hopefully it won't be a full blown crises but just a mini one that you can deal with in your hotel room.

 If you can afford it, get traveler's medical insurance. This will cover most emergency room visits and treatments post ER visits while you are abroad. Some countries require this as a contingency plan before you get a long-term visa (greater than 90 day stay). Just make sure before you buy in, that you read and understand the Pre-Existing Conditions clause. If you have Kaiser insurance, you are extremely lucky. They will cover the full bill of your medical care abroad, and might even fly you back to the US for treatment if you need to be hospitalized.

When traveling abroad, make sure you have some of your medical history with you. You should have a printout of your current labs, your last discharge summary, and a list of medications that you are on. I usually visit my doctor a few weeks before my trip for a routine checkup and ask for a letter that I can give physicians in other countries that details my most common sickle cell complications, medications and treatment plans. I also ask for a prescription for my pain meds that will cover me for the full period when I am abroad. I never want to run out of meds in a foreign country, because it will be hard to get the same meds and doses abroad. Keep all this stuff in a safe place, probably close to where you have your passport.

If you are visiting non-English speaking countries, make sure you understand the language. If not, I suggest to stay away from the rural areas and visit the big cities where there are alot of tourists and more English speakers. Chances are there, you will be able to find an English speaking hospital/physician that can attend to your needs. Some cities have hospitals that are exclusively English speaking, a good internet search or phone call to the embassy can help you in your research.

Know something about blood transfusions. If the country you are going to has a low population of Africans/African Americans, it might be hard to come up with the right antibody/antigen match for your blood. Sure, they can match your phenotype real easy, but each cultural group has antigen markers that are not present in others and put you at risk for having a transfusion reaction. This was one of the reasons that the embassy of Australia did not want to give me a work visa, because they were concerned that there wouldn't be a blood match if I did need a transfusion. This is why I highly recommend a pre-transfusion before you travel abroad.

Not all countries have a significant sickle cell population i.e. Scandinavian countries and some parts of Asia. You might find a couple of sickle cell warriors, but not a huge community. As a result, most hospitals and doctors will not have current exposure with treatment of a sickle cell warrior in full blown crises. (This can actually be a good thing). However, all physicians learn about sickle cell in school, it is a hematologic condition and is studied in all medical schools. The only thing is that not having current exposure puts the doctor at a disadvantage as to what to test for, and what to prescribe for your treatment. But not having exposure also means that the doctors are not prone to misjudge, discriminate, or stigmatize against sickle cell patients. The medical professionals are more compassionate, are more prone to listen to you and try to help you.

Ask for a hematologist or oncologist. They generally have more experience with blood disorders and may have come across sickle cell. If all else fails, I guess you have to settle for an internal med doctor, but don't worry...they aren't like the internal med docs here...they actually do not act like they know everything, will research your condition with peers and professional journals, and will read the documents you give them from your physician.


Know that medications are different when abroad. They have different drug manufacturers, different drug concentrations and different meds, just the same way they have a different currencies. So the docs might be giving you  a different drug that hopefully will have the same effect. If you have any allergies, research the alternate names and tell the docs so they know prior to your treatment. For example, Tylenol is called Paracetamol...(sorry, this is the only one I know offhand).

Beyond this, just follow the basic traveler rules. Only drink bottled water, get your immunization shots, stay safe and have fun!

Tips for Flying with Sickle Cell

So to all my darling warriors that are fretting about their first long trip in a plane...here a a few tips to keep in mind.

Layovers: Do you have a layover? If not, make sure that you stretch your legs periodically to prevent leg cramps. When booking, I always recommend at least one layover for sickle cell warriors. Remember, high altitudes=less oxygen concentration=the possibility of a crises. So heading to the ground for even 20 minutes and getting some normal atmospheric air and pressure helps immensely.

Stretch: I usually walk 5-10 minutes for every hour of my flight, from one side of the plane to the other. This helps to reduce the possibility of getting clots or your legs cramping up. If it's a short flight (less than 2 hours), you might be okay, but anything longer than that...stretching is the key.

Accessibility: Have your pain meds easily accesibile in case you need them. It's very frustrating trying to direct a flight attendant where your pain meds are as you are writhing about in pain. Pack your pain meds in your purse or laptop. Have them with you at all times.

Hydrate: Hydrate, hydrate, hydrate. You can never have too much water. Skip the caffenated drinks and alcohol, both of them are known to dehydrate you.

Snacks: Some flights don't feed you at all, and it's always good to have something in your stomach before you take some pain medication. That way you won't have to fight nausea on top of everything else.

Oxygen: Make sure that your airline has onboard oxygen, they usually do for emergencies, but sometimes, esp if it's a long flight, it's nice to know ahead of time if they have it.

Read my tale of flying here. I must say I learned my lesson after that.

Road Trip!!!

So I just did a cross country road trip down 101. Whoever said people with sickle cell could not drive long distances obviously has never met me.

I drove 997 miles from Portland, OR to Santa Barbara, CA...all by my wonderful, fabulous self! Much to the consternation of my parents, who wanted me to take Norio or a friend, I packed up Viola (pictured right---->) and headed south.

The first day, I drove through the wintery, snowy passes of Oregon for five and a half hours, and stopped for the night at a hotel in Yreka, CA. I was listening to music, books on tape (The Camel Club by David Baldacci was amazing!), and talking on the phone to my friends and family.

The second day, I drove halfway to San Fransciso...then turned around about 150 miles to visit my friend in Chico, CA...about 70 miles from Sacramento. That was a 7 hour drive. My friend Shay is 8 months pregnant, and this would be the last time seeing her before she delivered her bundle of joy! I spent the night with her talking...and took off early the next morning.

The last day, I drove 9 hours...and drove through SF, stopped at the Nigerian store for foodstuffs and kept on going until I reached Santa Barbara. All in all, I would say it was an awesome first solo road trip. Here's to many more!

So far, no problems, just minor soreness and some aches at the end of the day, but I'm sure a regular driver would have had this as well. I took some Motrin with me which I had to take on days 2 and 3.

I'm feeling great now, I'm down here ready to start work. So here is to defying another sickle cell rule.

Vacation Plans

Hello darlings,

Do you like my spiffy new signature? I saw it and totally fell in love with it. Bonjour from the beautiful city of Toronto...I had such a blast and I can't wait to go back. The trip was lovely---no sickness whatsoever, the people are great and it's truly a city of multiculturism. I almost want to move there!

School has been a bust, my new teacher is a PIA, but I'm hanging in there tryng to keep my 4.0. I'm just 2 classes in and I'm feeling overwhelmed already. I think it's more time management than anything, I spent 6 hours reading the new Acheron book versus working on my paper. What can I say...work hard, play harder!

No news on the Nicosan front. I've been taking it as religiously as I can being that I'm not a pill person and so far it's been treating me really well. I barely have pain anymore...probably 10% versus the 85% of the time that it used to be. If anyone is interested in ordering this, please email me and I'll send you the info.

I'm looking at my work schedule and it looks like I have 10 days coming up with nothing to do. I want to do something really cool and exciting, but airfare is a beeyotch right now, darn energy crises. Flying to Toronto was 600 bucks even though I bought the ticket hecka early.

Anyway, here are my options for my August trip.

1. Stay in Portland, drive up to Seattle for a few days to see my cousin.
2. Fly to Alabama to see my best friend who just got her heart broken.
3. Fly to NJ to annoy the heck out of my sister the Diva.
4. Go on one of those last minute trips to an exotic locale like Barbados, Mexico or St. Barts to get more stamps on my passport.

Leave your thoughts after the jump.
Hugs and I hope you are doing well.

Plans and Updates

In July I have 2 trips planned, one to visit my family in Indiana and another to see my friend in Canada. I'm really excited and can't wait, but you know I'm still filled with the trepidation that every sickle cell warrior goes through when the holiday time comes around---Am I Going to Fall Sick? My last trip flying to Hawaii was filled with pains and rigors, and of course a major crises when I got home. Although it's not in my usual routine to be sick in July---there is always the first time for everything.

Today was my first day of classes, I'm finally going back to school for my advanced degree. It's so weird having to learn APA style all over again for school, but I'm sure that I'll get used to it after a while. Why---oh why do they make us use APA?

About Nicosan, alls well on that front. No major changes so far from the last report. I told my mom about it so hopefully she will score a few bottles on her way over here to visit. So all in all this has been a pretty good week for me, just a couple of minor L2s daily and nothing requiring narcs this week. Yay! Go me!

Mahalo!

The flight to Hawaii was really long, about 8 hours in total. I was worried that my sickle cell would flare up but it held up. The main thing is that I can't go into the water as much as I would like to because my core body temperature drops when I'm immersed in water. Plus my right leg and knee has been paining me all week long and is causing a serious dent in this holiday. Every day it is getting better, the pain a little less, but I've been taking painkillers around the clock to keep from getting into a crises while on vacation.

Norio has been really worried, he wanted to cancel the whole trip because I was having pain the 2 days leading up to it. But this is one of those once in a lifetime vacations that I would have totally kicked myself for missing. I very stubbornly told him, "Sickle cell took over my graduation, my birthdays, and every single major holiday in the last 4 years. it's NOT taking my vacation dammit!"

I've done pretty much everything that I've wanted to do so far, just stayed on shore though, I don't want to antagonize myself into a crises. The house is beautiful, the beach is surreal and the ocean is absolutely sublime. I totally can understand why people have their weddings here, it's so romantic.

Tomorrow morning the plan is to go kayaking and 'swimming' with the dolphins. I'll be onshore about 2 miles away but I hope Norio can get some good pics for me.

Hope you all are doing well and aloha from Kona!

Holiday Weekend

"Hey, lets go skiing this weekend," my hubby said this morning. I stared at him. "Baby...what is my name? Do you know me?" I asked staring at him drolly.

"Oh yeah," he continued with a laugh. "Skiing probably isn't good for you because of the cold and the high altitude..."

"Precisely. Let's go somewhere hot instead. Like an island in the Caribbean."

Now that is the perfect sickle cell warrior's vacation. Except I have to worry about flying there and back. Dayum!

Road Trip

I've spent the last couple of days with Norion in the car driving from San Francisco to Portland, OR. He very wisely decided to break the trip in 2 segments, allowing it only to be about 4 hours for me in the car.

I was really worried about travelling such a long distance, but now that it's over I'm glad I came along. One thing about sickle cell is that we've gotta worry about blood pooling in the legs and causing clotting issues, especially when you are sedentary for hours at a time.

I did get out every couple of hours to walk around and it didn't feel bad at all. The only drawback really has been the awful cold, rainy weather. I'm still not sure I have a viable solution to that yet, but hopefully I will come up with something soon.

You would think that having grown up in Michigan, and lived in Baltimore for so many years I would be prepared for the coldness, but truly the last 2 years in the Bay Area have spoiled my capability of what is considered dressing warmly.

I'm going to Target tomorrow to stock up on thermals and thicker socks. My ass is freezing.

Cheers.

Flying With Sickle Cell Revisited

Okay everyone, as you can see I'm back, alive and well. I survived both flights with only L3s on the first one (which I quickly handled with a double dose of Vicodin/Benadryl) and L2s on the return trip. I did remember to walk every hour up and down the aisle and drank water like it was going out of style. I know the flight attendants were probably tired of my constant requests for water, but at least I stayed hydrated.

All in all it was a really great trip and I'm glad I went. Even though I thought I might fall sick, it didn't happen. Yay---go me!

Flying with Sickle Cell

As you know one of the precursors of an exacerbation is flying at high altitudes. Although a pressurized cabin is highly recommended---even this manages to trigger a sickle cell crises. Usually I've been fine flying with only minor L2s if anything but usually I didn't live in California and have to fly back east on a long flight.

I always hydrate, pack both my Dilaudid & Vicodin and pray and hope I don't get sick, getting up to stretch my legs and joints often as suggested. But even then, on a trip from Baltimore to Cali with a layover in Atlanta, my ass was laid out on the floor hurting in so much pain. The plane was packed, and I needed to lay down bad. Worse I was in the center aisle, so getting comfortable wasn't an option. My Vicodin wasn't working and my Dilaudid was in my other suitcase in the overhead bin. There was nothing I could do, just retreat into my head and wipe the tears running down my cheeks. Son-of-a-cow!

The stewardess noticed my distress and I told her I had to lay down bad. The only place that I could lay down as was at the back of the plane, between the kitchen and the bathrooms. So you know everyone who was going to pee saw me rolling around on the floor in pain, but I didn't give a rat's ass. She got my Dilaudid from my suitcase, called for a medic and the airline marshal came to check me as well. Luckily there was a doctor on the flight who suggested Oxygen (which they had on board). The rest of the flight was a blur, all 2 hours of it and when we landed in Atlanta, they wouldn't let me get on my next plane.

OH HELL FUCKIN" NO!

I know the reason is cause they were worried for me, but leaving me stuck in frickin' GA was not part of my game plan. I had places to be. I refused the ambulance they brought to take me to the hospital and had to sign a paper stating that I was boarding the plane against medical advice. They told me that if I took sick, they couldn't stop the plane once they started so it was my last chance. I doubled up on the Dilaudid, kicked some Benadryl as well and slept my way through the second flight. I did have pain but it wasn't as bad as the first time, and I got escorted from the plane with a wheelchair---all the way to baggage claim where my Aunt was waiting for me.

The reason this is on my mind is because I'm flying to my sister's wedding on the 29th. And it's a straight 8 hour flight round trip. Perhaps not having a layover wasn't that good of an idea.