Friday afternoon I received a phone call from Andrea, my Anti-coagulation Pharmacist at Kaiser. She wanted to know how I'm feeling and what's been going on with me. It wasn't a personal call; I had my blood drawn earlier in the day and the results came back: my Prothrombin Time PT/INR was 5.7. This is WAY higher than where it's supposed to be (in the 2.0 - 3.0 range).
The INR (International Normalized Ratio) measures how "thin" the blood is. In truth, the blood doesn't get thinner; the platelets get slipperier and don't form clots as easily. People take anti-coagulants (aka "blood thinners") to avoid blood clots and strokes.
Warfarin (brand name: Coumadin) is the old standby drug. It is affectionately called "rat poison" because it is, indeed, the poison in rat bait. The rats eat the bait and go back home and die of internal bleeding. Those of us who have a history of blood clots (I had the clot trifecta in 2007 that almost killed me) must stay on anti-coagulants forever. There is no amount of exercise or dietary change that will alter the deficiencies in my blood that cause it's propensity to clot.
Back to Andrea's call and questions:
Any bruises, she asked. I did a quick scan and noticed 2 bruises on one calf and a bruise on 1 arm and a big toe. And I have no idea from whence they came (sorry -- no wild activities lately!)
Any changes in your medicines? No.
Any changes in your alcohol in-take? Hmmm... (be honest!) Yes -- I haven't had any all week.
Any changes in your diet? Well, I've got 2 Behcet's ulcers in my mouth so I haven't been able to chew all week. Soup or broth each day.
BINGO! When you take the same dosage of warfarin but your diet changes significantly, it can throw the blood level off.
She told me to stop taking the warfarin for the weekend and come back on Monday for another PT/INR test. She will call me with the results and advise me on the next dosage.
Until then, she said, be careful! If you have any accidents or falls, go straight to the hospital and tell them you're on warfarin and your INR is high. (I know that I am highly susceptible to internal bleeding when the INR is this high).
I've become accustomed to this in the last 3.5 years, but I tell you that I do not enjoy getting "stuck" every 3-6 weeks. Since I have been trying different medications for other chronic illnesses (sounds much more dignified than "experimenting with drugs" doesn't it?!), my body is constantly re-calibrating.
There were rumors for years about more stable alternatives to warfarin. Anti-coagulants that are more patient-friendly would not be sensitive to how much spinach salad we eat this week (vitamin K), would not require frequent blood testing, and could be administered in a consistent dosage.
Guess what! Such a drug exists. It's used in Europe and Canada. It's been approved by the FDA, but is expected to be cost-prohibitive for most of us "regular" users. And if the insurance companies and medicare won't cover it, we won't get it. Here's a few links to information about Dabigatran (brand name: Pradaxa).
NOTE: I am not recommending or endorsing Dabigatran.
I really like MedScape website. It has lots of helpful information:
Dabigatran -- A Good New Replacement for Warfarin
Here's the pharmaceutical company's website for Pradaxa: Pradaxa website
If you hear more info or get to try the new med, let me know.
Peace,
Marina
Sunday, April 17, 2011
Friday, April 01, 2011
Top Ten Travel Tips for Folks with Chronic Illness
I learn something new each time I venture out with Polly and Behcet’s. While I get the “You don’t look sick” comment all the time, I’ve learned that the physical limitations are real. If I don’t listen to my body and pace myself, I will pay for it handsomely with several days in bed or worse.
At the same time, it is important for many of us (especially those with children) to keep up strong appearances as much as possible. Kids are in tune with our actions even more than what we say. “Oh, I’m great, really!” doesn’t convince my teenagers anymore. But if I get out of the house and cheer him on at tennis or volunteer with my daughter’s theatre production, then they feel more certain.
TIP #1: Rest up A LOT before a trip. Seriously! Lay low; essential errands only. Let your body get as calm as possible before upsetting it with travel, time zone changes, new foods, beverages, etc.
TIP #2: Take LOTS of photos, no matter how long you are out and about. Take pictures of cool buildings, crowds, bridges, flowers, street signs, billboards, people… whatever you see. They don’t all have to go in a photo album (does anyone make these anymore?). If you are a facebooker or email your friends, share the pics. It gives the impression you are out and about a lot longer than you actually are.
I did this during a 3 day trip to Venice and people thought I was all over the place. The truth? I had one meal each day and spent 6 hours one day “touristing.” Probably spent a total of 12 hours “out and about” over the 3 days, but no one would have guessed from all the photos I shared on facebook.
TIP #3: Don’t be shy about using a cane or other assistive device. There are a lot of good looking canes and walking sticks on the market now, so don’t be shy! It serves many purposes:
1. Gives you something reliable to lean on when covering unfamiliar areas, especially stairs and cobblestone areas.
2. Enables you to stay out longer.
3. Keeps your hands off public railings and other things that people touch with who-knows-what.
4. Signals others that you may need a bit of patience or kindness.
I used my cane in Venice when I did the walk-about with some of the other wives and simply explained that I have chronic conditions that make me fatigued and a bit unsteady; the cane helps me keep up with everyone else. I know I wouldn’t have lasted the 6 hour day without it.
TIP #4: Establish an Opt-In Policy with your travel companions. Set the expectation that you are content to hang out at or near the hotel while your family/friends do major sightseeing. You will go with them when you feel like it. This takes pressure off of everyone. The others don’t have to limit their plans (e.g., that might take too long and mom will need a rest; can’t do that because mom can’t climb to the top of the lighthouse). It also takes pressure off of you from having to ‘suck it up and go’ when you really don’t feel good enough.
When we planned our spring break trip, we explained to the kids that mom is not going to go on many of the adventures. In fact, we’ll assume that she is NOT going unless she tells us that she IS going to join us. I get to hear all their stories when we connect at the end of the day – sometimes we meet at a restaurant, sometimes they come back to the hotel.
TIP #5: Be adventurous on your own! While the others are out and about, you need not stay in your hotel room. Get some fresh air and wander outside a bit. Find a café or park nearby and do some good people-watching.
I love to see people in their natural habitat. Each new city is like a human zoo to me. Do they make eye contact / smile / greet passersby? Are they taking in their environment or wrapped up in their own mental worlds? Do they smoke? Do they litter? Do they spit on the sidewalk? Are they talking on cellphones or bluetooths? Do they eat while walking or stop and eat? Are there a lot of dogs on leashes? Small dogs or large? Are there babies in strollers – pushed by moms or nannies? What type of shoes do the men and women wear on the street? What are the locals wearing versus the tourists – can you tell the difference? Is there graffiti? Posters on walls – for entertainment, political statements, advertisements?
TIP #6: Plan ahead and check out excursions or sites that are easily accessible. You may inquire: are there benches to sit? Can I get water if needed? Are there ramps or elevators instead of stairs? The internet is a wonderful resource (and so is your public library); you can find out about interesting places to visit that are accessible to you ahead of your arrival. You may choose to see some things while your companions do other adventures. It will provide great dinner conversation later!
TIP #7: Keep some of each of your medications with you at all times. Don’t leave all them at the hotel/cruise ship or wherever you are staying at night. You never know what might lead you off the planned schedule, and it is good to have them handy. This includes a pain reliever and bandages for foot blisters or minor cuts (just in case).
TIP #8: Keep a list of all your medications, dosages, and times of day for each in your wallet (and near your passport). This is important for those who travel with you. Should something happen to you, the handy list will relieve some stress of trying to recall all your meds.
TIP #9: Keep a list of the diseases, ailments, ALLERGIES, health issues in your wallet (with your medicine information). It is helpful for emergency personnel to know if you are diabetic, hypertensive, on blood thinner, allergic to medications, etc.
TIP #10: Bring healthy snacks with you. Particularly if you have food allergies (like gluten, nuts, lactose, etc.), it is wise to bring some dry food bars and snacks that you can access if the right kind of meal isn’t available when you are hungry.
I find that breakfast bars are my salvation. I need to eat something with my morning medication cocktail, and I’m hardly “dining room ready” when I take the meds. Those breakfast bars come in very handy!
At the same time, it is important for many of us (especially those with children) to keep up strong appearances as much as possible. Kids are in tune with our actions even more than what we say. “Oh, I’m great, really!” doesn’t convince my teenagers anymore. But if I get out of the house and cheer him on at tennis or volunteer with my daughter’s theatre production, then they feel more certain.
TIP #1: Rest up A LOT before a trip. Seriously! Lay low; essential errands only. Let your body get as calm as possible before upsetting it with travel, time zone changes, new foods, beverages, etc.
TIP #2: Take LOTS of photos, no matter how long you are out and about. Take pictures of cool buildings, crowds, bridges, flowers, street signs, billboards, people… whatever you see. They don’t all have to go in a photo album (does anyone make these anymore?). If you are a facebooker or email your friends, share the pics. It gives the impression you are out and about a lot longer than you actually are.
I did this during a 3 day trip to Venice and people thought I was all over the place. The truth? I had one meal each day and spent 6 hours one day “touristing.” Probably spent a total of 12 hours “out and about” over the 3 days, but no one would have guessed from all the photos I shared on facebook.
TIP #3: Don’t be shy about using a cane or other assistive device. There are a lot of good looking canes and walking sticks on the market now, so don’t be shy! It serves many purposes:
1. Gives you something reliable to lean on when covering unfamiliar areas, especially stairs and cobblestone areas.
2. Enables you to stay out longer.
3. Keeps your hands off public railings and other things that people touch with who-knows-what.
4. Signals others that you may need a bit of patience or kindness.
I used my cane in Venice when I did the walk-about with some of the other wives and simply explained that I have chronic conditions that make me fatigued and a bit unsteady; the cane helps me keep up with everyone else. I know I wouldn’t have lasted the 6 hour day without it.
TIP #4: Establish an Opt-In Policy with your travel companions. Set the expectation that you are content to hang out at or near the hotel while your family/friends do major sightseeing. You will go with them when you feel like it. This takes pressure off of everyone. The others don’t have to limit their plans (e.g., that might take too long and mom will need a rest; can’t do that because mom can’t climb to the top of the lighthouse). It also takes pressure off of you from having to ‘suck it up and go’ when you really don’t feel good enough.
When we planned our spring break trip, we explained to the kids that mom is not going to go on many of the adventures. In fact, we’ll assume that she is NOT going unless she tells us that she IS going to join us. I get to hear all their stories when we connect at the end of the day – sometimes we meet at a restaurant, sometimes they come back to the hotel.
TIP #5: Be adventurous on your own! While the others are out and about, you need not stay in your hotel room. Get some fresh air and wander outside a bit. Find a café or park nearby and do some good people-watching.
I love to see people in their natural habitat. Each new city is like a human zoo to me. Do they make eye contact / smile / greet passersby? Are they taking in their environment or wrapped up in their own mental worlds? Do they smoke? Do they litter? Do they spit on the sidewalk? Are they talking on cellphones or bluetooths? Do they eat while walking or stop and eat? Are there a lot of dogs on leashes? Small dogs or large? Are there babies in strollers – pushed by moms or nannies? What type of shoes do the men and women wear on the street? What are the locals wearing versus the tourists – can you tell the difference? Is there graffiti? Posters on walls – for entertainment, political statements, advertisements?
TIP #6: Plan ahead and check out excursions or sites that are easily accessible. You may inquire: are there benches to sit? Can I get water if needed? Are there ramps or elevators instead of stairs? The internet is a wonderful resource (and so is your public library); you can find out about interesting places to visit that are accessible to you ahead of your arrival. You may choose to see some things while your companions do other adventures. It will provide great dinner conversation later!
TIP #7: Keep some of each of your medications with you at all times. Don’t leave all them at the hotel/cruise ship or wherever you are staying at night. You never know what might lead you off the planned schedule, and it is good to have them handy. This includes a pain reliever and bandages for foot blisters or minor cuts (just in case).
TIP #8: Keep a list of all your medications, dosages, and times of day for each in your wallet (and near your passport). This is important for those who travel with you. Should something happen to you, the handy list will relieve some stress of trying to recall all your meds.
TIP #9: Keep a list of the diseases, ailments, ALLERGIES, health issues in your wallet (with your medicine information). It is helpful for emergency personnel to know if you are diabetic, hypertensive, on blood thinner, allergic to medications, etc.
TIP #10: Bring healthy snacks with you. Particularly if you have food allergies (like gluten, nuts, lactose, etc.), it is wise to bring some dry food bars and snacks that you can access if the right kind of meal isn’t available when you are hungry.
I find that breakfast bars are my salvation. I need to eat something with my morning medication cocktail, and I’m hardly “dining room ready” when I take the meds. Those breakfast bars come in very handy!
Please share your favorite tips and I'll add them to the list. Safe travels!
Cheers!
Here are some more tips from fellow MPN and Behcet's Travelers:
TIP #11: Remember to bring your physician contact information with you, along with your health insurance information.
TIP # 12: Keep a set of all your medical information (Tips 8, 9, & 11) together for easy reference. Keep it in an envelope marked "Jane Doe's Medical Information" along with a copy of your passport, drivers license or other photo identification. Again, if you are this organized, you will most likely never need to share this information. But imagine if something happened to you... having all your info in one handy place would make treatment so much smoother!
TIP #13: Group tours are a great way to travel. Once you choose a destination, look into tour packages. Someone else plans the itinerary and arranges the logistics, you can ride in comfortable buses and learn from knowledgeable tour guides.
TIP #14: Pack spare underwear in your carry-on bag. You never know when you and your luggage will be separated for a day or two. While you can live in the same street clothes for more than a day, a fresh pair of undies makes life a bit more pleasant.
Here are some more tips from fellow MPN and Behcet's Travelers:
TIP #11: Remember to bring your physician contact information with you, along with your health insurance information.
TIP # 12: Keep a set of all your medical information (Tips 8, 9, & 11) together for easy reference. Keep it in an envelope marked "Jane Doe's Medical Information" along with a copy of your passport, drivers license or other photo identification. Again, if you are this organized, you will most likely never need to share this information. But imagine if something happened to you... having all your info in one handy place would make treatment so much smoother!
TIP #13: Group tours are a great way to travel. Once you choose a destination, look into tour packages. Someone else plans the itinerary and arranges the logistics, you can ride in comfortable buses and learn from knowledgeable tour guides.
TIP #14: Pack spare underwear in your carry-on bag. You never know when you and your luggage will be separated for a day or two. While you can live in the same street clothes for more than a day, a fresh pair of undies makes life a bit more pleasant.
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