On this current trip there has been one component that has really thrown security agents and has been a real pain and a place of anxiety for me, which is my extra insulin pump. On all previous trips I have not carried an extra insulin pump with me. I may start to now, knowing how easy it is to arrange a loaner pump with Medtronic; however in the past I didn’t realize it was an option. In the pump manual, Medtronic (the maker of my insulin pump) has written “If you are going to have an X-ray, CT scan, MRI or other type of exposure to radiation, take off your pump, meter and remote control before entering a room containing any of this equipment.” BUT then one sentence later it also states, “The Paradigm pump is designed to withstand common electromagnetic interference, including airport security systems.” I have always interpreted this as I can walk through the metal detector just fine, but I should not send my insulin pump through the X-ray machine. I have talked to a Medtronic representative who confirmed this.
So this means that I have to ask for a ‘hand-check’ of my loaner insulin pump. I take it out of my suitcase, send everything else through the X-ray, and then I ask for a hand-check of it before I walk through the metal detector. In the US this goes over fine. They seem used to this concept when I explain that it is an insulin pump because I am diabetic. In other countries this has been a big problem.
Surprisingly the place I had the biggest problem was the Schipol airport in Amsterdam. When returning from South Africa to Seattle our layover was in Amsterdam. Based on a policy created after 9-11 Northwest Airlines (now Delta) has you go through another security check before entering the gate area for flights into the US. Duncan and I had our passports screened by an agent who asked something that prompted me to tell her that I was diabetic and carrying diabetic supplies including an insulin pump. Ironically, she responded that she was also diabetic and had an insulin pump and gave me some encouraging words about how long she had been diabetic and complication free. I thanked her and headed to the last stop on the screening, the X-ray and metal detector machines. Here I did the usual, took off my shoes, and jacket, put all my liquids including insulin separately in their plastic tub, took out my loaner insulin pump and then sent my bag through the X-ray machine. Then, holding my loaner pump, I stood near the metal detector and asked for a hand-check, stating what the pump was.
This greatly confused the agent I asked, who looked at me quizzically and then told me to wait there. After five minutes another agent came and told me that I had to put it through the X-ray. I refused (politely) saying that it could not go through the X-ray. This agent then had his supervisor come over. He explained the situation to her; she told me that I had to put it through the X-ray because this was a flight to the US. I refused (politely). She called her supervisor (located somewhere offsite) and then relayed back to me that I really had to put it through the X-ray. At this point both Duncan and I are getting very frustrated. I asked them to talk to the security agent who had checked my passport. Here’s where the big problem was. This agent, despite being diabetic herself and wearing an insulin pump, believed that the insulin pump would be fine to go through the X-ray machine as long as it didn’t have insulin in it. This logic made no sense whatsoever - that somehow the liquid insulin would be affected by magnetic fields but that the pump which actually has intricate metal parts would not be is beyond me. Her testimony was the kiss of death. Completely defeated and seemingly without any other option, I sent the loaner pump through the X-ray.
Duncan, who is really my advocate when I can no longer be, understood the severity of the situation and made a complaint with the supervisor on site and asked for her name so that we could file a formal complaint. Once we were in Thailand I was able to take some time to write my formal complaint which I sent to Northwest Airlines via email. I had assumed that because they were the ones who mandated another security check before flights going to the US that they were also the ones who mandated the security policy. A month after I sent the email I received a thoughtful email back stating (my summary) that while they were very sorry for this experience, Northwest Airlines did not make the security policy even though the security agents in Amsterdam specifically stated that it was Northwest Policy. They also gave both Duncan and I some air miles and thankfully gave me the name and address of the company that provides security services at Schipol. I’ve sent a letter to this company stating my experience and my concerns and asking that they figure out how to hand-check medical equipment that cannot be send through the X-ray. I have not received a response yet.
The good news is that the loaner pump seems to have not been affected by the X-ray. (Albeit, this is only based on my opinion of using it for a short time after this experience to make sure it was still alive and kicking).
So here’s what I learned from this experience. Hold out! Do not let airport security make you do something that you know could damage your medical supplies and therefore threaten your health. Also I now carry a printout of the page of the manual that states that the insulin pump should not go through X-rays. However, my next task is to let Medtronic know that the way they write this (as quoted above) can be confusing since it states that common airport security systems are okay. This needs to be changed to say that only metal detectors are okay.
While I definitely understand the need for airport security, any organization with a good policy should also know the policy’s limitations and when it is acceptable to make exceptions. I hope in writing the security company for Schipol that this will be acknowledged and that there will be different protocol on handling medical equipment that cannot go through the X-ray machine.
Andrea
Showing posts with label Diabetes. Show all posts
Showing posts with label Diabetes. Show all posts
Friday, May 29, 2009
Wednesday, May 27, 2009
Diabetic Supplies and Airport Security Part 1
As we prepare to be on the road once again, I thought it timely to talk about my experiences as a diabetic carrying diabetic supplies through airport security.
First of all, you have to know that I never, ever put any of my supplies in a checked bag. This is because one missing checked bag, if holding my diabetic supplies, could easily end a trip, not to mention that the small amount of money that the airline gives you if they’ve truly lost your bag pales in comparison to the actual cost of supplies. My suitcase (carry-on size) packed for these last five months in Asia carried about $8000 USD worth of supplies ($4000 of this was an extra insulin pump). Too valuable to simply trust to the system of destination city stickers and conveyer belts!
For the non-diabetic reader, you should also know that this suitcase carries a lot of needles and a lot of plastic accessories. All of the needles are small and nothing that could actually do any real damage to anyone, so they should not be perceived as a threat. In all of the US airports I have ever been through, this is precisely the reaction I get. My suitcase goes through the X-ray machine and almost never gets another look. A few times in smaller airports the conveyer belt backs up and moves my suitcase through again for another look but usually all it takes is a friendly, “That’s my suitcase, and I’m diabetic” from me to end the scrutiny. Sadly, I think this is a reflection on how common diabetes has become in the US.
Previous to this big trip the only place I’ve ever had more than a look at my belongings is in Thailand. On return flights to the US (specifically on Northwest Airlines (now Delta)) passengers have to go through another security screening before being allowed into the gate area for the flight. After placing your baggage through another X-ray, each passenger must also open each piece of luggage for a physical inspection. One look at all of my needles usually gets me some special attention. This results in my bag being carried to the gate for me (with me in tow) and a security agent presenting me and my bag to the gate agent. My Thai has never been good enough to know what is said about me, but whatever is said doesn’t elicit much of a reaction from the gate agent who looks at me once and then resumes whatever work they are doing. I take my bag and sit down and board as normal later.
On this current trip I’ve had a few curious interactions and one horrible one (coming up in the next post). Going through Amsterdam on the way to Paris the security agents were intrigued by my pack of AAA batteries which I use to power my insulin pump. The quantity of the pack (16 batteries) seemed to be the concern. My bag was initially run through the X-ray and then it was taken off the conveyer belt by a security agent who asked me if I had batteries. When I said yes, I was asked to locate them. Once found (at the bottom of my bag, of course) they were taken, visually inspected and then run through the X-ray machine again, nothing more. We were then free to run for our plane to Paris.
This April, in the Bangkok airport on our way to Manila I made it through the first security check point without a problem but was stopped at a second security point that allowed you into the gate area. After my bag went through the X-ray I was told to take it to another agent for a physical inspection. I told this agent that I was diabetic in English, which she didn’t understand. So then I tried in Thai, which elicited an understanding that I had said ‘diabetic’ but not any other sort of understanding. As I pulled things out of my bag she realized that I had some syringes (they are backup-backup, in case the loaner insulin pump fails). She went away, found a scrap of paper and then came back, wrote down my passport number and asked me how many syringes I had. I told her 7, she wrote ‘7’ down next to my passport number on her scrap of paper and I went on my merry way.
I find it a little troublesome that I never know what I’m going to encounter at the airport with regard to security and my diabetic supplies. Usually internationally, I encounter a few extra hoops that I have to jump through, which while frustrating especially when you’re literally running to catch a flight, are not horrible. Unfortunately the next post will tell of one experience that I had on this trip that was a great example of how systems and policies can sometimes do harm to innocent travelers – even those who aren’t involved in politically sensitive activities.
Andrea
First of all, you have to know that I never, ever put any of my supplies in a checked bag. This is because one missing checked bag, if holding my diabetic supplies, could easily end a trip, not to mention that the small amount of money that the airline gives you if they’ve truly lost your bag pales in comparison to the actual cost of supplies. My suitcase (carry-on size) packed for these last five months in Asia carried about $8000 USD worth of supplies ($4000 of this was an extra insulin pump). Too valuable to simply trust to the system of destination city stickers and conveyer belts!
For the non-diabetic reader, you should also know that this suitcase carries a lot of needles and a lot of plastic accessories. All of the needles are small and nothing that could actually do any real damage to anyone, so they should not be perceived as a threat. In all of the US airports I have ever been through, this is precisely the reaction I get. My suitcase goes through the X-ray machine and almost never gets another look. A few times in smaller airports the conveyer belt backs up and moves my suitcase through again for another look but usually all it takes is a friendly, “That’s my suitcase, and I’m diabetic” from me to end the scrutiny. Sadly, I think this is a reflection on how common diabetes has become in the US.
Previous to this big trip the only place I’ve ever had more than a look at my belongings is in Thailand. On return flights to the US (specifically on Northwest Airlines (now Delta)) passengers have to go through another security screening before being allowed into the gate area for the flight. After placing your baggage through another X-ray, each passenger must also open each piece of luggage for a physical inspection. One look at all of my needles usually gets me some special attention. This results in my bag being carried to the gate for me (with me in tow) and a security agent presenting me and my bag to the gate agent. My Thai has never been good enough to know what is said about me, but whatever is said doesn’t elicit much of a reaction from the gate agent who looks at me once and then resumes whatever work they are doing. I take my bag and sit down and board as normal later.
On this current trip I’ve had a few curious interactions and one horrible one (coming up in the next post). Going through Amsterdam on the way to Paris the security agents were intrigued by my pack of AAA batteries which I use to power my insulin pump. The quantity of the pack (16 batteries) seemed to be the concern. My bag was initially run through the X-ray and then it was taken off the conveyer belt by a security agent who asked me if I had batteries. When I said yes, I was asked to locate them. Once found (at the bottom of my bag, of course) they were taken, visually inspected and then run through the X-ray machine again, nothing more. We were then free to run for our plane to Paris.
This April, in the Bangkok airport on our way to Manila I made it through the first security check point without a problem but was stopped at a second security point that allowed you into the gate area. After my bag went through the X-ray I was told to take it to another agent for a physical inspection. I told this agent that I was diabetic in English, which she didn’t understand. So then I tried in Thai, which elicited an understanding that I had said ‘diabetic’ but not any other sort of understanding. As I pulled things out of my bag she realized that I had some syringes (they are backup-backup, in case the loaner insulin pump fails). She went away, found a scrap of paper and then came back, wrote down my passport number and asked me how many syringes I had. I told her 7, she wrote ‘7’ down next to my passport number on her scrap of paper and I went on my merry way.
I find it a little troublesome that I never know what I’m going to encounter at the airport with regard to security and my diabetic supplies. Usually internationally, I encounter a few extra hoops that I have to jump through, which while frustrating especially when you’re literally running to catch a flight, are not horrible. Unfortunately the next post will tell of one experience that I had on this trip that was a great example of how systems and policies can sometimes do harm to innocent travelers – even those who aren’t involved in politically sensitive activities.
Andrea
Tuesday, May 5, 2009
Wilsons Published...
Two interesting things to note with regard to this blog and our travels so far. As you know Andrea really wanted this to be a resource for others with Type 1 Diabetes who want to travel internationally. This past week The Wilson's Wanderings and specifically Andrea's diabetes supply packing list was highlighted among many other resources on www.sixuntilme.com . Sixuntilme is a blog read by many around the world written by Kerri Morrone Sparling who writes daily about her experience with diabetes. Andrea has found Kerri's words encouraging and entertaining. Because of this exposure over 100 people checked out Andrea's packing list and our blog on the first day it was listed!
Here's the link to the specific post: http://sixuntilme.com/blog2/2009/04/grand_rounds.html
Then we also learned that a letter I wrote to the editors of Go! magazine is featured in the May 2009 edition. Go! is one of the two premier travel magazines in South Africa. The letter highlights the story of my encounter with the lifeguards back in December. What is really cool is that though much was edited, the magazine left in the main point of the story and published a photo of the lifeguards along with all their names. I had told the lifeguards that I would write their story and am really glad and grateful that Go! picked it up as an acknowledgement of their hard work! I am excited that so many will read about them.
To read Go! Magazine's Letters to the editor click on the following link:
http://sites.google.com/site/thewilsonswanderings/Home/LetterstotheEditorMay2009-Go!mag.pdf?attredirects=0
To read the original story, click here: http://thewilsonswanderings.blogspot.com/2008/12/luthando-bonginkosi-and-patrick-three.html
Duncan
Here's the link to the specific post: http://sixuntilme.com/blog2/2009/04/grand_rounds.html
Then we also learned that a letter I wrote to the editors of Go! magazine is featured in the May 2009 edition. Go! is one of the two premier travel magazines in South Africa. The letter highlights the story of my encounter with the lifeguards back in December. What is really cool is that though much was edited, the magazine left in the main point of the story and published a photo of the lifeguards along with all their names. I had told the lifeguards that I would write their story and am really glad and grateful that Go! picked it up as an acknowledgement of their hard work! I am excited that so many will read about them.
To read Go! Magazine's Letters to the editor click on the following link:
http://sites.google.com/site/thewilsonswanderings/Home/LetterstotheEditorMay2009-Go!mag.pdf?attredirects=0
To read the original story, click here: http://thewilsonswanderings.blogspot.com/2008/12/luthando-bonginkosi-and-patrick-three.html
Duncan
Saturday, February 21, 2009
3.5 Months on the Road - Diabetic Travel Update
As the first portion of our trip is finished it is time to update you on my general diabetic health. The 3.5 months were a wonderful experience and have given me a gift of not only great travel but a reminder that anything is still possible for me - it sometimes just takes more work. Securing the 9 months of diabetic supplies was probably the most tangible example of this. (See post titled '18 Bottles of Insulin and 2700 Test Strips - Securing Diabetic Supplies').
In the past 3.5 months I have been generally healthy. It has been a little more work to figure out food and carbohydrate counts of meals, but this is a daily diabetic task wherever you are. However, what I wasn't expecting was getting colds once a month. Right after we first arrived in Europe I got a cold. Then right after we arrived in South Africa I got a cold and finally another one almost a month later.
I chalk this up to 'new enviroment = new germs' and a generally weakened immune system. However, of all the illnesses to get I am thankful it was just colds.
Besides taking malaria pills there was only my toe problem that had to be dealt with. There was nothing else that had to be treated or prevented. In the spirit of transparency about diabetic problems, despite my strong aversion to talking about my feet, I will explain the problem for all who care to continue reading.
For several years on and off I have had problems with infections along the side of the nail of one of my toes. This problem has nothing to do with diabetes but the necessity of getting it healed quickly has everything to do with diabetes. One of the complications of diabetes is nerve disease (neuropathy) which results in limited feeling or no feeling especially in the feet and hands. I have the very beginning signs of neuropathy in my feet. Neuropathy can cause diabetics to not realize when they have cuts, infections, blisters, etc on their feet and thus can subsequently result in a lack of treatment which in the case of infections can result in gangrene and amputation.
Knowing that we were going on this trip and knowing that we would be walking everywhere made the reoccuring infection really irritating. The problem arose again in June 2008 and I went to a podatrist who treated the infection. Two and a half months later the infection was back and I was particularly worried. The podatrist suggested that I have part of the nail removed from that toe and a chemical put on the skin so that the nail would not grow back, hopefully solving the problem. I had this procedure done in September only two weeks before we took off. For the first few days I seemed to be healing fine but then I got a horrible infection, much worse than I had ever experienced before. A full course of antibiotics helped the infection to go away but the toe remained puffy and irritated. For the next month and a half on the road I soaked my foot in hot salt water almost every day to keep infection away and try to get the toe to heal, but it would not heal.
It wasn't until we were in Nelspruit, South Africa that we had the time and relationship with people to understand how the health care system worked and get the recommendation of a good podatrist. In the private sector of health (South Africa also has state run health care) you are able to completely choose your doctors but you are also fully responsible for the bill. And while private care is certainly much more expensive than state care, compared to US prices even when insurance is paying, it is ridiculously cheap. I paid a total of $30 USD for the entire appointment. Another bonus of the South African private health care market is that doctors have more time to see you. In the US I am generally given just 15 minutes with my doctor which is never enough (for me or any other patient) and which usually results in doctors running late for all their appointments.
Dr. Fuhrie (in Nelspruit, South Africa) saw me for an hour and explained many things that my podatrist in the US should have explained to me before the procedure, namely that the chemical he put on my skin to ensure that the nail would not grow back is harsh acid and often times wounds the skin. Thus the reason for my horrible infection. The acid also made the good (not removed) part of the nail splinter which resulted in a piece of the nail sticking into the toe making it red and puffy. Dr. Fuhrie removed this piece and the toe healed in a week.
When we were back in the States briefly in January I had my regular, every three months, appointment with my endocrinologist and I had my regular labs done. I expect my A1C (three month blood sugar summary) to be higher than normal, not because of travel, but because of getting three colds. When diabetics are sick it is much more difficult to control blood sugar. Because of this back-to-back cold record I fully expected to get another cold when we arrived in Bangkok (again, simply because of being exposed to new germs) but I'm happy to report that I haven't seemed to pick anything new up yet.
Thus, my conclusion from the 3.5 months of travel is that while there is a certain inherent risk when traveling internationally as a diabetic I believe that with a lot of forethought and work before the trip any diabetic travel. Also as a result of this trip there is a certain courage that has replaced some of the fear that I used to carry as a diabetic, and that far outweights the struggle of getting supplies and three colds.
In the past 3.5 months I have been generally healthy. It has been a little more work to figure out food and carbohydrate counts of meals, but this is a daily diabetic task wherever you are. However, what I wasn't expecting was getting colds once a month. Right after we first arrived in Europe I got a cold. Then right after we arrived in South Africa I got a cold and finally another one almost a month later.
I chalk this up to 'new enviroment = new germs' and a generally weakened immune system. However, of all the illnesses to get I am thankful it was just colds.
Besides taking malaria pills there was only my toe problem that had to be dealt with. There was nothing else that had to be treated or prevented. In the spirit of transparency about diabetic problems, despite my strong aversion to talking about my feet, I will explain the problem for all who care to continue reading.
For several years on and off I have had problems with infections along the side of the nail of one of my toes. This problem has nothing to do with diabetes but the necessity of getting it healed quickly has everything to do with diabetes. One of the complications of diabetes is nerve disease (neuropathy) which results in limited feeling or no feeling especially in the feet and hands. I have the very beginning signs of neuropathy in my feet. Neuropathy can cause diabetics to not realize when they have cuts, infections, blisters, etc on their feet and thus can subsequently result in a lack of treatment which in the case of infections can result in gangrene and amputation.
Knowing that we were going on this trip and knowing that we would be walking everywhere made the reoccuring infection really irritating. The problem arose again in June 2008 and I went to a podatrist who treated the infection. Two and a half months later the infection was back and I was particularly worried. The podatrist suggested that I have part of the nail removed from that toe and a chemical put on the skin so that the nail would not grow back, hopefully solving the problem. I had this procedure done in September only two weeks before we took off. For the first few days I seemed to be healing fine but then I got a horrible infection, much worse than I had ever experienced before. A full course of antibiotics helped the infection to go away but the toe remained puffy and irritated. For the next month and a half on the road I soaked my foot in hot salt water almost every day to keep infection away and try to get the toe to heal, but it would not heal.
It wasn't until we were in Nelspruit, South Africa that we had the time and relationship with people to understand how the health care system worked and get the recommendation of a good podatrist. In the private sector of health (South Africa also has state run health care) you are able to completely choose your doctors but you are also fully responsible for the bill. And while private care is certainly much more expensive than state care, compared to US prices even when insurance is paying, it is ridiculously cheap. I paid a total of $30 USD for the entire appointment. Another bonus of the South African private health care market is that doctors have more time to see you. In the US I am generally given just 15 minutes with my doctor which is never enough (for me or any other patient) and which usually results in doctors running late for all their appointments.
Dr. Fuhrie (in Nelspruit, South Africa) saw me for an hour and explained many things that my podatrist in the US should have explained to me before the procedure, namely that the chemical he put on my skin to ensure that the nail would not grow back is harsh acid and often times wounds the skin. Thus the reason for my horrible infection. The acid also made the good (not removed) part of the nail splinter which resulted in a piece of the nail sticking into the toe making it red and puffy. Dr. Fuhrie removed this piece and the toe healed in a week.
When we were back in the States briefly in January I had my regular, every three months, appointment with my endocrinologist and I had my regular labs done. I expect my A1C (three month blood sugar summary) to be higher than normal, not because of travel, but because of getting three colds. When diabetics are sick it is much more difficult to control blood sugar. Because of this back-to-back cold record I fully expected to get another cold when we arrived in Bangkok (again, simply because of being exposed to new germs) but I'm happy to report that I haven't seemed to pick anything new up yet.
Thus, my conclusion from the 3.5 months of travel is that while there is a certain inherent risk when traveling internationally as a diabetic I believe that with a lot of forethought and work before the trip any diabetic travel. Also as a result of this trip there is a certain courage that has replaced some of the fear that I used to carry as a diabetic, and that far outweights the struggle of getting supplies and three colds.
I hope this will encourage other diabetics to not feel limited in their travel dreams.
Andrea
Monday, December 15, 2008
Diabetic Chillin' in South Africa (Keeping Medication and Supplies Cool)
Insulin, the key that opens your cells to allow them to 'eat' the sugar in your blood stream, needs to be refrigerated. Blood glucose test strips have a specific range of temperature that they are to be kept at, and the blood glucose meter itself will actually stop working if temperatures are too high or too low. All this high maintenance paraphernalia, which keeps me alive, means I don't travel particularly easily as a diabetic.
Insulin, being the most temperature sensitive has always been my main concern when traveling. Often in the past when traveling I hunt down the closest refrigerator I can find. Often times in Thailand this has meant that my insulin ends up in a refrigerator by the front desk of wherever we are staying along with the beer or soft drinks they are trying to sell. While I have had my concerns about it going missing from such a public place, I have never had a problem.
This trip produced more of a challenge because we were moving so often and are on the road for so long. In Europe I had no problem with keeping my test strips and meter within its temperature range, but finding a refrigerator for my insulin proved more difficult. My insulin is packed in a small 6x4 inch cooler case which at the beginning of this journey held 10 bottles of insulin and three small blue ice. Whenever we got the chance (mostly at friends houses) these were frozen and subsequently provided a day of cooling when traveling between places by train. The problem of refrigeration arose at hotels. Two of our hotels in Europe had a small refrigerator in the room and another had a small communal fridge for guest use. However, all others did not provide a refrigerator for guest use. Mostly this was not a huge problem, because I brought several items with me.
The first helpful item is a small medi-fridge. While it holds only 3 bottles of insulin, I found this helpful when I put my insulin the communal fridge – the thought being, if someone walks off with my insulin at least I will have some still with me. The second and
third items are both Frios – a UK product that is specifically designed to keep medication cold when you have no access to a refrigerator. This product was brand new to me and while it is no where near refrigeration cold it has come in handy. The extra large Frio is essentially a small purse with an inner and outer camber. The inner camber is removed and then soaked in cold water for a few minutes to allow the gel inside of its walls to expand and hold some of the water. Once removed and dried off the pouch is then placed back inside the outer pouch which keeps the 'wetness' inside. The Frio cools by evaporation. The advertisements for the Frio claim that it will keep whatever is inside the inner pouch around 68F when outside temperatures are 100F.
While using it in Europe to try to keep my insulin cold I didn't feel much of a difference between the room temperature and the insulin temperature inside the Frio. I believe this is because the Frios real testing ground is those places where the temperature really is 100F. The Frio has been a beneficial edition to my supplies while in South Africa – not to keep my insulin cool, but my test strips.
When we first came to South Africa three years ago we went on a group tour of Kruger National Park. It was late October so summer was near but the rains had not come to cool the park down. It was HOT, really Hot. I refused to be told the actual temperature because once my brain knows it really starts complaining. If I can keep it in the dark it just has to deal. However, it was hot enough that when just sitting inside the vans, let me emphasis 'just sitting', sweat would be constantly rolling down the backs of my legs. While my body knew how to cope the real problem was my diabetes supplies. I had found and put my insulin in a fridge so it was fine, but the rest of my supplies sat all day in our canvas tent, which as you can imagine became much hotter than even the outside temperature. When we left two days later to drive back to Joburg my test strips had literally swelled from the heat and would not fit into my meter! Fortunately 7 hours later with the help of air-con they had returned to normal size and worked fine. This problem which I had never heard of before or since this episode taught me to adhere to the temperature range on the test strip bottle.
Having returned to Kruger this time and experienced 100+ degree temperatures again, the Frio was put to work cooling my test strips, as we were able to keep my insulin cool in a cooler with ice. The extra large Frio would only hold 8 bottles of test strips so I had to rotate them in and out, but where in Europe I couldn't really tell if the Frio was cooling, in South Africa it was very evident. I believe its advertising claim to be true.
The other thing of note for any diabetics traveling to South Africa is that almost all of our accommodation have had communal fridges for guest use. Most of the places we stay are 'backpackers' and provide self-catering kitchens. And in general I have always felt that my insulin is safe in there.
Andrea
Insulin, being the most temperature sensitive has always been my main concern when traveling. Often in the past when traveling I hunt down the closest refrigerator I can find. Often times in Thailand this has meant that my insulin ends up in a refrigerator by the front desk of wherever we are staying along with the beer or soft drinks they are trying to sell. While I have had my concerns about it going missing from such a public place, I have never had a problem.
This trip produced more of a challenge because we were moving so often and are on the road for so long. In Europe I had no problem with keeping my test strips and meter within its temperature range, but finding a refrigerator for my insulin proved more difficult. My insulin is packed in a small 6x4 inch cooler case which at the beginning of this journey held 10 bottles of insulin and three small blue ice. Whenever we got the chance (mostly at friends houses) these were frozen and subsequently provided a day of cooling when traveling between places by train. The problem of refrigeration arose at hotels. Two of our hotels in Europe had a small refrigerator in the room and another had a small communal fridge for guest use. However, all others did not provide a refrigerator for guest use. Mostly this was not a huge problem, because I brought several items with me.
The first helpful item is a small medi-fridge. While it holds only 3 bottles of insulin, I found this helpful when I put my insulin the communal fridge – the thought being, if someone walks off with my insulin at least I will have some still with me. The second and
third items are both Frios – a UK product that is specifically designed to keep medication cold when you have no access to a refrigerator. This product was brand new to me and while it is no where near refrigeration cold it has come in handy. The extra large Frio is essentially a small purse with an inner and outer camber. The inner camber is removed and then soaked in cold water for a few minutes to allow the gel inside of its walls to expand and hold some of the water. Once removed and dried off the pouch is then placed back inside the outer pouch which keeps the 'wetness' inside. The Frio cools by evaporation. The advertisements for the Frio claim that it will keep whatever is inside the inner pouch around 68F when outside temperatures are 100F.While using it in Europe to try to keep my insulin cold I didn't feel much of a difference between the room temperature and the insulin temperature inside the Frio. I believe this is because the Frios real testing ground is those places where the temperature really is 100F. The Frio has been a beneficial edition to my supplies while in South Africa – not to keep my insulin cool, but my test strips.
When we first came to South Africa three years ago we went on a group tour of Kruger National Park. It was late October so summer was near but the rains had not come to cool the park down. It was HOT, really Hot. I refused to be told the actual temperature because once my brain knows it really starts complaining. If I can keep it in the dark it just has to deal. However, it was hot enough that when just sitting inside the vans, let me emphasis 'just sitting', sweat would be constantly rolling down the backs of my legs. While my body knew how to cope the real problem was my diabetes supplies. I had found and put my insulin in a fridge so it was fine, but the rest of my supplies sat all day in our canvas tent, which as you can imagine became much hotter than even the outside temperature. When we left two days later to drive back to Joburg my test strips had literally swelled from the heat and would not fit into my meter! Fortunately 7 hours later with the help of air-con they had returned to normal size and worked fine. This problem which I had never heard of before or since this episode taught me to adhere to the temperature range on the test strip bottle.
Having returned to Kruger this time and experienced 100+ degree temperatures again, the Frio was put to work cooling my test strips, as we were able to keep my insulin cool in a cooler with ice. The extra large Frio would only hold 8 bottles of test strips so I had to rotate them in and out, but where in Europe I couldn't really tell if the Frio was cooling, in South Africa it was very evident. I believe its advertising claim to be true.
The other thing of note for any diabetics traveling to South Africa is that almost all of our accommodation have had communal fridges for guest use. Most of the places we stay are 'backpackers' and provide self-catering kitchens. And in general I have always felt that my insulin is safe in there.
Andrea
Sunday, December 14, 2008
Diabetes Supplies Packing List
I've attached a document on our google site (link in the upper right corner of the blog site) that is a list of the diabetes supplies I packed for the Europe and South Africa portion of the trip. While this was only about 3.5 months actual travel time I packed at least 4 months worth of supplies and some, like insulin pump sites, that have a tendency to need to be moved more often because of problem sites, I brought almost 5 months.Most of these items will be common sense to a diabetic, so I'll just highlight the unusual that I have found valuable:
Medication Cooling Devices:
Medi-fridge (holds 3 bottles of insulin)
Extra large Frio
Insulin pump Frio
My next post will describe how I used these to keep my medication cool.
Equipment:
1 extra insulin pump
Hopefully you won't need to use this, but as you know if you've been following along, I had a insulin pump malfunction just 10 days into the trip. I got my loaner insulin pump by 'applying' to Medtronic (they actually have a loaner pump program). The pump, usually only on loan for 3 months, was kindly extended to the entire 9 months. I only had to pay a non-refundable $50 and will have to return the pump shortly after I return, or a $4000 charge for the pump will be put on my account. The only part of this that I am a little unsure about is that I seem to be completely liable if the loaner pump malfunctions or breaks, which if true could result in me having to pay for something that was not my fault. . .
Medication:
Some sort of general antibiotic in case of infection
Malaria pills
Don't mess with malaria, take your pills and precautions (bug spray, long sleeved shirt and long pants at night)). In South Africa there are only a few areas in the country that have malaria which were ironically everywhere we camped: Cape Vidal, Sodwana Bay, and Kruger. We took every precaution and amazingly only ended up with one bite between the two of us (of course it was me- mozzies LUV me :)). We took Malarone (atovaquone and proguanil HCI) which was simple enough - start pills two days before entering a malaria area, one pill everyday you're in the area, and then continue one pill a day a week after you've left.
Andrea
Tuesday, December 9, 2008
Nutritional Information Packaging and the Diabetic
Having not written for some time about traveling with diabetes here's the first of a few thoughts. . .
In the US almost all food comes in a wrapper that has nutritional information printed on the outside. This information is very important to diabetics as diet is key to good blood sugar control. The particular piece of information that is important to healthy blood sugars is not the amount of sugar rather the amount of carbohydrates consumed. For me, a type 1 diabetic with an insulin pump I give one unit of insulin for every 15 grams of carbohydrate. This system allows me to eat whatever I want (including sugar) as long as I 'cover' the carbs with the right amount of insulin.
Back home in the US I didn't really need to check the information on packaging anymore, because I knew the food and the amount of insulin I would give. Traveling, you can imagine that I have run into foods unfamiliar to me. Normally this would not be a huge problem, I could find a grocery store and peruse the nutritional information on the back of packages to know what I was eating and what to bolus (giving insulin to cover food intake), but I have been dismayed to find that the nutritional information packaging both in Europe and in South Africa (if there is any at all) is inadequate. The nutritional information is there but only measured and stated for 100g even if the package is a different gram count. This would not be bad information if the package also included the gram serving size and how many servings were in a package, but without it, I find it irrelevant – having to make too many guesstimates and divisions or multiplications to get an accurate number that would have been easy for them to put on the package in the first place. So I simply guess as to the carb amount I'm eating based on what I already know. Sometimes this works and sometimes I am really off. It makes me wonder what diabetics do in these countries and if I'm missing something. . .
Andrea
In the US almost all food comes in a wrapper that has nutritional information printed on the outside. This information is very important to diabetics as diet is key to good blood sugar control. The particular piece of information that is important to healthy blood sugars is not the amount of sugar rather the amount of carbohydrates consumed. For me, a type 1 diabetic with an insulin pump I give one unit of insulin for every 15 grams of carbohydrate. This system allows me to eat whatever I want (including sugar) as long as I 'cover' the carbs with the right amount of insulin.
Back home in the US I didn't really need to check the information on packaging anymore, because I knew the food and the amount of insulin I would give. Traveling, you can imagine that I have run into foods unfamiliar to me. Normally this would not be a huge problem, I could find a grocery store and peruse the nutritional information on the back of packages to know what I was eating and what to bolus (giving insulin to cover food intake), but I have been dismayed to find that the nutritional information packaging both in Europe and in South Africa (if there is any at all) is inadequate. The nutritional information is there but only measured and stated for 100g even if the package is a different gram count. This would not be bad information if the package also included the gram serving size and how many servings were in a package, but without it, I find it irrelevant – having to make too many guesstimates and divisions or multiplications to get an accurate number that would have been easy for them to put on the package in the first place. So I simply guess as to the carb amount I'm eating based on what I already know. Sometimes this works and sometimes I am really off. It makes me wonder what diabetics do in these countries and if I'm missing something. . .
Andrea
Wednesday, October 22, 2008
The Insulin Pump that Devoured Batteries: Our First Major Diabetic Problem of the Trip
The morning that we left for this trip my insulin pump alarmed and said I had a low battery. This is a very normal interaction between my pump and I that, although I have never actually timed it, happens every 3 weeks to a month plus. The battery the pump uses is just a simple AAA. I replaced it and thought, 'that's good – I'll have a fresh battery for Europe,' meaning I knew I wouldn't have to change it soon in some awkward location like the plane or a bus, etc. We arrived in France, toured around for 3 days and then made our way to Switzerland for our friend's wedding. Right before we were about to walk out the door for the wedding (5 days after the new battery) my pump alarmed and said it had a low battery. While I thought this was quite strange and a little panic arose in me, I simply changed the battery to a new one and went to the wedding. Exactly five days later while we were still in Switzerland, this time visiting Hedi (Duncan's 'Auntie' who also worked in North Thailand), I was sitting at breakfast and I heard the pump alarm. When I looked down the pump said 'No Power, 0% battery left, pump off.' What!? Not even a warning this time.
I changed the battery and we set off on our journey to stay with Lotte, another Swiss Auntie who had worked in North Thailand. By the time we reached her village several hours later I was quite panicked and had devised several schemes in my head around how to get another insulin pump.
First of all I must tell you that I do have a back-up insulin pump. It is a loaner pump through the loaner pump travel program at Medtronic (the maker of my insulin pump). They were kind to me and extended their usual agreement to loan out a pump for 3 months to 9 months. I paid $50 and signed an agreement that said if there was any damage to the pump or if it was lost or stolen I would pay the $4000 to replace it. Medtronic has devised this program in part because it is difficult to send the insulin pump to another country. The pump, a medical device, has to go through customs, and as they told me may not even be an 'allowed' medical device in that country. Customs solely decides how quickly the pump will be released, which for a traveler like me, who is moving from city to city, country to country may make it impossible to meet up with it. This problem of meeting up with the pump also assumes that you even have a safe address to send it to in the first place.
So I'm 10 days into the trip and realize that my pump is not working correctly. In particular I worried that the shutting off without warning could lead to bigger problems. I know I have a loaner pump, but I also know that I'm not back in the United States until January and only for 10 days then. My logic followed as such, if I just had a problem 10 days into the trip, what's to say that my loaner pump won't have a problem before we're back in January and then I will be up a creek without a paddle.
At the time, the most workable scheme involved me calling Medtronic who would send the new replacement pump (mine is still under warranty) to my parents who would then cart it over to Rome when they leave for their (unrelated) trip. While we miss each other in Rome, I thought they could potentially leave it at a hotel we would shortly stay at. This of course counted on the willingness of the hotel to do so and assumed that the hotel would have a safe to keep the pump in until I arrive.
When we arrived at Lotte's, she was very gracious and allowed me to use her phone (with my international calling card) to call Medtronic. I called the helpline and told the agent what was going on. The agent first suggested she send just a replacement battery cap to Switzerland, but I quickly told her this was my only chance, as I saw it to get a new pump (somewhat) safely and quickly because my parents were to arrive in Rome before we arrive there. She understood and agreed to send a new pump to my parents address in the United States. Having had a new pump sent as a replacement for a malfunctioning one before, I knew Medtronic's policy that once a new pump was sent you had to send your old pump back within 14 days so that your account would not be charged for the $4000. I brought this policy up and explained that there was no way that I could get it back within 14 days and that I worried that even if I got it in the mail within that period that it would take longer to arrive in the US from Italy. She explained very calmly yet forcefully that I was not to send the pump from ANY other country. I was to send it from within the US because of the risks of sending it from another country. Hmmm. . . so then I explained, if that is true, I will certainly be outside of the 14 day return window because I will not be able to return it until January. I asked her what would happen to my account. She said that she would put a note in my account/file that explained the situation but that my account would still be 'charged' the $4000 after 14 days, and that I would receive letters to the effect of I owe $4000. More importantly to me, this charge would freeze my account and Medtronic would not send my three month supply shipments until I returned the pump or paid the charge. This was troubling to me because one of my three month supply shipments is scheduled to arrive at my parents house right before we briefly return to the States in January and I need to take these supplies with me to Thailand in February. The window to: get back to the States, send in the old pump, have them receive the old pump, clear my account, allow me to order supplies, and then ship the supplies all in January was too short to accomplish all this.
I was quite stressed at this news, but fortunately Duncan reminded me that later this week we are scheduled to go to Meina (north of Milan, Italy) to a conference on third-culture kids. We are connected to this conference through a friend, Tom, that first knew Duncan from church in Seattle. Tom has worked in Europe (with his wife and four children) for over 16 years specifically working in Christian ministry for an organization called Youth Compass that supports third-culture kids in international schools. He and his family recently moved back to the States from Germany and are located in the Seattle area. When Tom heard our travel plans, he invited us to come to the conference in Meina. Knowing all this, Duncan had the brilliant idea, that if willing, my parents could give Tom the insulin pump for him to bring over to the conference and then take the old one back to my parents for them to send in to Medtronic, thus clearing my account. I emailed Tom, who quickly emailed back, saying he was happy to help. Ahh!! Instant Relief! As far as I know I will have a new working (not a battery eating monster) insulin pump within a few days!
Again I have been so grateful and thankful for my community who so willingly help with these problems. A big thank you to my parents and to Tom. I'll let you know how it all goes, but please keep me and all my equipment in your prayers and thoughts, because neither I nor my community wants to have to fix another problem again. :)
Andrea
I changed the battery and we set off on our journey to stay with Lotte, another Swiss Auntie who had worked in North Thailand. By the time we reached her village several hours later I was quite panicked and had devised several schemes in my head around how to get another insulin pump.
First of all I must tell you that I do have a back-up insulin pump. It is a loaner pump through the loaner pump travel program at Medtronic (the maker of my insulin pump). They were kind to me and extended their usual agreement to loan out a pump for 3 months to 9 months. I paid $50 and signed an agreement that said if there was any damage to the pump or if it was lost or stolen I would pay the $4000 to replace it. Medtronic has devised this program in part because it is difficult to send the insulin pump to another country. The pump, a medical device, has to go through customs, and as they told me may not even be an 'allowed' medical device in that country. Customs solely decides how quickly the pump will be released, which for a traveler like me, who is moving from city to city, country to country may make it impossible to meet up with it. This problem of meeting up with the pump also assumes that you even have a safe address to send it to in the first place.
So I'm 10 days into the trip and realize that my pump is not working correctly. In particular I worried that the shutting off without warning could lead to bigger problems. I know I have a loaner pump, but I also know that I'm not back in the United States until January and only for 10 days then. My logic followed as such, if I just had a problem 10 days into the trip, what's to say that my loaner pump won't have a problem before we're back in January and then I will be up a creek without a paddle.
At the time, the most workable scheme involved me calling Medtronic who would send the new replacement pump (mine is still under warranty) to my parents who would then cart it over to Rome when they leave for their (unrelated) trip. While we miss each other in Rome, I thought they could potentially leave it at a hotel we would shortly stay at. This of course counted on the willingness of the hotel to do so and assumed that the hotel would have a safe to keep the pump in until I arrive.
When we arrived at Lotte's, she was very gracious and allowed me to use her phone (with my international calling card) to call Medtronic. I called the helpline and told the agent what was going on. The agent first suggested she send just a replacement battery cap to Switzerland, but I quickly told her this was my only chance, as I saw it to get a new pump (somewhat) safely and quickly because my parents were to arrive in Rome before we arrive there. She understood and agreed to send a new pump to my parents address in the United States. Having had a new pump sent as a replacement for a malfunctioning one before, I knew Medtronic's policy that once a new pump was sent you had to send your old pump back within 14 days so that your account would not be charged for the $4000. I brought this policy up and explained that there was no way that I could get it back within 14 days and that I worried that even if I got it in the mail within that period that it would take longer to arrive in the US from Italy. She explained very calmly yet forcefully that I was not to send the pump from ANY other country. I was to send it from within the US because of the risks of sending it from another country. Hmmm. . . so then I explained, if that is true, I will certainly be outside of the 14 day return window because I will not be able to return it until January. I asked her what would happen to my account. She said that she would put a note in my account/file that explained the situation but that my account would still be 'charged' the $4000 after 14 days, and that I would receive letters to the effect of I owe $4000. More importantly to me, this charge would freeze my account and Medtronic would not send my three month supply shipments until I returned the pump or paid the charge. This was troubling to me because one of my three month supply shipments is scheduled to arrive at my parents house right before we briefly return to the States in January and I need to take these supplies with me to Thailand in February. The window to: get back to the States, send in the old pump, have them receive the old pump, clear my account, allow me to order supplies, and then ship the supplies all in January was too short to accomplish all this.
I was quite stressed at this news, but fortunately Duncan reminded me that later this week we are scheduled to go to Meina (north of Milan, Italy) to a conference on third-culture kids. We are connected to this conference through a friend, Tom, that first knew Duncan from church in Seattle. Tom has worked in Europe (with his wife and four children) for over 16 years specifically working in Christian ministry for an organization called Youth Compass that supports third-culture kids in international schools. He and his family recently moved back to the States from Germany and are located in the Seattle area. When Tom heard our travel plans, he invited us to come to the conference in Meina. Knowing all this, Duncan had the brilliant idea, that if willing, my parents could give Tom the insulin pump for him to bring over to the conference and then take the old one back to my parents for them to send in to Medtronic, thus clearing my account. I emailed Tom, who quickly emailed back, saying he was happy to help. Ahh!! Instant Relief! As far as I know I will have a new working (not a battery eating monster) insulin pump within a few days!
Again I have been so grateful and thankful for my community who so willingly help with these problems. A big thank you to my parents and to Tom. I'll let you know how it all goes, but please keep me and all my equipment in your prayers and thoughts, because neither I nor my community wants to have to fix another problem again. :)
Andrea
Tuesday, October 21, 2008
18 Bottles of Insulin and 2700 test strips – Securing Diabetic Supplies
Notification to readers: Following is a very detailed account of one aspect of my preparation as a diabetic for this trip – getting all of my prescriptions for 9 months of travel. It is specifically written to other diabetics who may want to use information in here to help plan their future travels, hence the great detail. Feel free to read as much or as little as you want. :)
This trip is possible as a diabetic through a lot of hard work, prayer, and getting connected to the right people. When we first got serious about this trip we knew the biggest obstacle would be to get all of the prescriptions and supplies I needed. I have to admit that I first went to the trusty internet and researched to see if anyone had gone before me to see what they did. No real luck. I did find some forums that were country specific where people had posted their questions on how to obtain insulin, but mostly I found the responses were from people who thought they had the right answer but had not done it themselves – a BIG difference. It is because I had difficultly finding information on the web that I write this today.
So, first of all, let me be very clear that I am not a doctor and anything I write here is simply my opinion. However, I have been type 1 diabetic for 15 years and I have traveled internationally before. I also (unfortunately) have been in another country and needed to seek medical treatment, most recently in Thailand in 2006 for blown-out ear drum (not diabetes related).
So almost seven months ago I called my health insurance company and told them about the trip and asked how I could get enough prescriptions. They told me that their policy is to only allow 3 months of a vacation prescription supply at one time. Furthermore, I could only get two 3 months supplies in a calendar year and I would only be allowed to get the second 3 month supply if I ordered a sole one month supply in between. Hmm. . . because they seemed so adamant I didn’t push and instead set about figuring out how I would make this work.
Our trip is broken into two segments because of how we ‘bought’ (we’re actually using frequent flier miles) our plane tickets. This was also by design because we thought we would need to come back to pick up more prescriptions (and we still do because my diabetic supplies literally take up a whole suitcase, more information later). So the first part of the trip is 3.5 months and the second is 5 months. When I was working with the original 3 month vacation supply policy I did several things to start filling in the gaps:
1)I got connected with the diabetes educator at my endocrinologist’s office who was excited for me and knew the importance of me having all the supplies I needed (in particular insulin and blood glucose test strips). She began to gather free samples for me from the diabetes supply vendors.
2)My endocrinologist wrote a prescription for several more test strips than I actually use a month. (Although my insurance company caps the amount they will give in one month to 300 – and I use almost that every month). This allowed me to stock pile about a month’s extra.
3)Several family members who have been diagnosed as type 2 in the last several years gave or were going to give me some of their test strips.
4)I learned that I could reorder my prescriptions every 23 days and thus also stock pile a little.
5)On a calendar I worked out this 23 day schedule so that I would make sure to reorder as soon as I could but also because I was going to have to have my mom order a one month supply of prescriptions in December so that I could get another 3 month supply when I returned to the States in January before we took off again.
6)I began to heavily research how to get insulin and test strips in Thailand (where we would be when the second 3 month supply ran out). This included me emailing a hospital who told me I would have to see an endocrinologist there and have him/her write me a prescription to be filled in Thailand.
All said, a lot of work, BUT here’s the good news.
After all this was arranged or in the works, my health insurance plan was changed to a different plan, and because I wanted to ensure that the new plan would still allow me to get a 3 month vacation prescription supply I called to make sure. When I called I didn’t say anything about what I already knew – I simply told of my situation and posed the same question, ‘How do I get all my prescriptions?’ Either the woman I was talking to was new or she had a heart for wanting to help me because she said “Hmm. . . I don’t know, let me check into it and get back to you.” She called back later that day to say she was working on it with her supervisor and would get back to me the next day. The next day came and she called and said she needed another day. Well then 3 weeks passed. In the course of the next month and a half I called her twice and left messages.
Finally as time marched on I got more annoyed and worried that my fall-back patchwork plan (outlined above) wouldn’t work (or at the very least was and would be difficult to execute), so after leaving her a message that said call me back TODAY, and not hearing anything I called and talked to a new person. My new contact listened to the whole story and said she would get in contact with the woman who wasn’t calling me back and would call me back the next day. When this new woman forgot I called again the next day and talked to someone new. He told me that the first woman who was not calling me back had been very ill and had not been at work for a long time, a very good and sad explanation. He then read me the policy (two 3 month vacation supplies in a calendar year) and told me that I could buy my prescriptions out of pocket before I left and then when I got back call my health insurance provider who would (with the approval of a supervisor) send me a form that would (maybe – if approved) reimburse me for the cost minus my prescription co-pay. I calmly explained to him that the cost of my prescriptions out of pocket would be thousands of dollars and that I did not think this was a good option, especially considering the reimbursement required a supervisor’s approval. He then told me that he was instant messaging with the woman I had talked to the day before and that she would be willing to call me back today. I said I would like to talk to her. I promptly got off the phone and cried. Sometimes being an advocate for yourself day in and out gets exhausting and overwhelming.
I had it together by the time the woman called me back and to my great surprise she said that she and her supervisor thought that they could submit a form on my behalf requesting approval for 9 months worth of prescriptions. I was totally shocked. As she gathered information from me about the length of the trip two things stood out to me as particularly helpful to my cause (and maybe to yours). 1) The woman repeatedly made sure that this was not a business trip (I have no idea why) and 2) I told her to write down on the request that my health insurance contract was through July 2009 – which is what 9 months worth of prescriptions brought me to. This last point was important because I emphasized that there was no way that I was going to take their prescriptions and then get insurance through another company they were assured to get my contracted money. She typed this up and then submitted it to marketing (don’t you love that marketing is making decisions about my health, yes, it warms my heart too :) ). A day later (because they had expedited my request) I heard that my 9 month prescription request had been approved! HOORAY!!! I still get a little adrenaline rush from thinking about it.
However, the process was not quite over. My insurance company would only allow me to get my prescriptions one week before my departure date, which was tight for me because we were leaving our house to allow our renters to move in and were heading up to Seattle to stay with my parents. To make sure that everything would go as smoothly as possible I went into my pharmacy and talked to a cashier to explain my situation. She assured me that everything would be fine. I did not particularly like her answer because it came too quickly without much thought so I came back a few days later and talked to another cashier that knows me by name. She called a pharmacist to the counter to talk with me who not only was really excited for me but told me to call him personally on the earliest day I could order the prescriptions so that he could run them. Several days later I realized that all of my prescriptions would expire (they are only written for 1 year and most were half way through that year) before I would be able to get 9 months so I went in and talked to my pharmacist friend who sent faxes to all of my doctors explaining the situation and asking for a new prescription and also the approval to give 9 months worth. I followed up and called all of the doctors’ offices to make sure they got the forms and would complete them quickly.
On the earliest day I could order the prescriptions I called my pharmacist friend to put the order through. It wouldn’t go through!!! After talking to my health insurance company, my pharmacist friend called me to tell me that my carrier told him they would only allow 3 months of prescriptions at a time and that is why it wouldn’t go through. Fortunately for me I had the direct phone number of the pharmacy services supervisor at my health insurance who had been working on my 9 month approval. I called and talked to her and explained the situation. After several minutes on hold she came back and said she had resolved the issue and that everything should go through. I called my pharmacy friend back and I was still on the phone with him when the prescription order went through. HOORAY!!!
However, the process was still not quite over! When I went to pick up my prescriptions the next day I found out that the company that the pharmacy orders supplies from had thought their request for the huge amount of blood glucose test strips I needed had been someone’s mistake, so they didn’t send them. Thankfully my pharmacist friend called them as soon as he learned of the problem and told them, ‘You are messing with someone’s life here, get those here today!’ I was able to pick them up several hours later.
SO, knowing all of this here’s my advice for a diabetic who wants to travel internationally for longer periods of time:
1)Call your insurance company and be persistent – tell them there has to be a way for them to approve your prescriptions in advance. Talk to or get a supervisor involved.
2)Work with one pharmacist who knows your story.
3)Have direct numbers for all parties who know what’s going on and perhaps backup people and their direct numbers because as you read in my experience many things went wrong and these people and their numbers became lifelines.
4)Tell someone at your endocrinologist’s/doctor’s office who can also be an advocate for you with your insurance company or in getting you some free samples.
5)Write thank you notes to anyone who helped you in this process, hoping that this will help pave the way for others coming behind you or maybe help change a policy.
I hope that there will be many other type 1 diabetics who travel the world. Good luck and good health!
Andrea
This trip is possible as a diabetic through a lot of hard work, prayer, and getting connected to the right people. When we first got serious about this trip we knew the biggest obstacle would be to get all of the prescriptions and supplies I needed. I have to admit that I first went to the trusty internet and researched to see if anyone had gone before me to see what they did. No real luck. I did find some forums that were country specific where people had posted their questions on how to obtain insulin, but mostly I found the responses were from people who thought they had the right answer but had not done it themselves – a BIG difference. It is because I had difficultly finding information on the web that I write this today.
So, first of all, let me be very clear that I am not a doctor and anything I write here is simply my opinion. However, I have been type 1 diabetic for 15 years and I have traveled internationally before. I also (unfortunately) have been in another country and needed to seek medical treatment, most recently in Thailand in 2006 for blown-out ear drum (not diabetes related).
So almost seven months ago I called my health insurance company and told them about the trip and asked how I could get enough prescriptions. They told me that their policy is to only allow 3 months of a vacation prescription supply at one time. Furthermore, I could only get two 3 months supplies in a calendar year and I would only be allowed to get the second 3 month supply if I ordered a sole one month supply in between. Hmm. . . because they seemed so adamant I didn’t push and instead set about figuring out how I would make this work.
Our trip is broken into two segments because of how we ‘bought’ (we’re actually using frequent flier miles) our plane tickets. This was also by design because we thought we would need to come back to pick up more prescriptions (and we still do because my diabetic supplies literally take up a whole suitcase, more information later). So the first part of the trip is 3.5 months and the second is 5 months. When I was working with the original 3 month vacation supply policy I did several things to start filling in the gaps:
1)I got connected with the diabetes educator at my endocrinologist’s office who was excited for me and knew the importance of me having all the supplies I needed (in particular insulin and blood glucose test strips). She began to gather free samples for me from the diabetes supply vendors.
2)My endocrinologist wrote a prescription for several more test strips than I actually use a month. (Although my insurance company caps the amount they will give in one month to 300 – and I use almost that every month). This allowed me to stock pile about a month’s extra.
3)Several family members who have been diagnosed as type 2 in the last several years gave or were going to give me some of their test strips.
4)I learned that I could reorder my prescriptions every 23 days and thus also stock pile a little.
5)On a calendar I worked out this 23 day schedule so that I would make sure to reorder as soon as I could but also because I was going to have to have my mom order a one month supply of prescriptions in December so that I could get another 3 month supply when I returned to the States in January before we took off again.
6)I began to heavily research how to get insulin and test strips in Thailand (where we would be when the second 3 month supply ran out). This included me emailing a hospital who told me I would have to see an endocrinologist there and have him/her write me a prescription to be filled in Thailand.
All said, a lot of work, BUT here’s the good news.
After all this was arranged or in the works, my health insurance plan was changed to a different plan, and because I wanted to ensure that the new plan would still allow me to get a 3 month vacation prescription supply I called to make sure. When I called I didn’t say anything about what I already knew – I simply told of my situation and posed the same question, ‘How do I get all my prescriptions?’ Either the woman I was talking to was new or she had a heart for wanting to help me because she said “Hmm. . . I don’t know, let me check into it and get back to you.” She called back later that day to say she was working on it with her supervisor and would get back to me the next day. The next day came and she called and said she needed another day. Well then 3 weeks passed. In the course of the next month and a half I called her twice and left messages.
Finally as time marched on I got more annoyed and worried that my fall-back patchwork plan (outlined above) wouldn’t work (or at the very least was and would be difficult to execute), so after leaving her a message that said call me back TODAY, and not hearing anything I called and talked to a new person. My new contact listened to the whole story and said she would get in contact with the woman who wasn’t calling me back and would call me back the next day. When this new woman forgot I called again the next day and talked to someone new. He told me that the first woman who was not calling me back had been very ill and had not been at work for a long time, a very good and sad explanation. He then read me the policy (two 3 month vacation supplies in a calendar year) and told me that I could buy my prescriptions out of pocket before I left and then when I got back call my health insurance provider who would (with the approval of a supervisor) send me a form that would (maybe – if approved) reimburse me for the cost minus my prescription co-pay. I calmly explained to him that the cost of my prescriptions out of pocket would be thousands of dollars and that I did not think this was a good option, especially considering the reimbursement required a supervisor’s approval. He then told me that he was instant messaging with the woman I had talked to the day before and that she would be willing to call me back today. I said I would like to talk to her. I promptly got off the phone and cried. Sometimes being an advocate for yourself day in and out gets exhausting and overwhelming.
I had it together by the time the woman called me back and to my great surprise she said that she and her supervisor thought that they could submit a form on my behalf requesting approval for 9 months worth of prescriptions. I was totally shocked. As she gathered information from me about the length of the trip two things stood out to me as particularly helpful to my cause (and maybe to yours). 1) The woman repeatedly made sure that this was not a business trip (I have no idea why) and 2) I told her to write down on the request that my health insurance contract was through July 2009 – which is what 9 months worth of prescriptions brought me to. This last point was important because I emphasized that there was no way that I was going to take their prescriptions and then get insurance through another company they were assured to get my contracted money. She typed this up and then submitted it to marketing (don’t you love that marketing is making decisions about my health, yes, it warms my heart too :) ). A day later (because they had expedited my request) I heard that my 9 month prescription request had been approved! HOORAY!!! I still get a little adrenaline rush from thinking about it.
However, the process was not quite over. My insurance company would only allow me to get my prescriptions one week before my departure date, which was tight for me because we were leaving our house to allow our renters to move in and were heading up to Seattle to stay with my parents. To make sure that everything would go as smoothly as possible I went into my pharmacy and talked to a cashier to explain my situation. She assured me that everything would be fine. I did not particularly like her answer because it came too quickly without much thought so I came back a few days later and talked to another cashier that knows me by name. She called a pharmacist to the counter to talk with me who not only was really excited for me but told me to call him personally on the earliest day I could order the prescriptions so that he could run them. Several days later I realized that all of my prescriptions would expire (they are only written for 1 year and most were half way through that year) before I would be able to get 9 months so I went in and talked to my pharmacist friend who sent faxes to all of my doctors explaining the situation and asking for a new prescription and also the approval to give 9 months worth. I followed up and called all of the doctors’ offices to make sure they got the forms and would complete them quickly.
On the earliest day I could order the prescriptions I called my pharmacist friend to put the order through. It wouldn’t go through!!! After talking to my health insurance company, my pharmacist friend called me to tell me that my carrier told him they would only allow 3 months of prescriptions at a time and that is why it wouldn’t go through. Fortunately for me I had the direct phone number of the pharmacy services supervisor at my health insurance who had been working on my 9 month approval. I called and talked to her and explained the situation. After several minutes on hold she came back and said she had resolved the issue and that everything should go through. I called my pharmacy friend back and I was still on the phone with him when the prescription order went through. HOORAY!!!
However, the process was still not quite over! When I went to pick up my prescriptions the next day I found out that the company that the pharmacy orders supplies from had thought their request for the huge amount of blood glucose test strips I needed had been someone’s mistake, so they didn’t send them. Thankfully my pharmacist friend called them as soon as he learned of the problem and told them, ‘You are messing with someone’s life here, get those here today!’ I was able to pick them up several hours later.
SO, knowing all of this here’s my advice for a diabetic who wants to travel internationally for longer periods of time:
1)Call your insurance company and be persistent – tell them there has to be a way for them to approve your prescriptions in advance. Talk to or get a supervisor involved.
2)Work with one pharmacist who knows your story.
3)Have direct numbers for all parties who know what’s going on and perhaps backup people and their direct numbers because as you read in my experience many things went wrong and these people and their numbers became lifelines.
4)Tell someone at your endocrinologist’s/doctor’s office who can also be an advocate for you with your insurance company or in getting you some free samples.
5)Write thank you notes to anyone who helped you in this process, hoping that this will help pave the way for others coming behind you or maybe help change a policy.
I hope that there will be many other type 1 diabetics who travel the world. Good luck and good health!
Andrea
My Diabetes Health and History
I was diagnosed with type 1 diabetes when I was eleven years old. I had no family history of diabetes. I had just started sixth grade and had the symptoms of: unquenchable thirst, insatiable hunger, and extreme fatigue. Because the timing coincided with the first month of sixth grade I thought that my body was taking its time to adjust to the new schedule, six new teachers, and the disappointment of no recess (Boo!). Fortunately, I sprained my ankle (this is probably the only time I have felt fortunate about a sprained ankle) which required me to go see a doctor at urgent care. During the examination my symptoms led the doctor to tell me to go see my regular doctor the next day, who subsequently diagnosed me with diabetes. I spent the next three or four days in the hospital learning with my family how to take care of my health.
Diabetes can be genetically inherited but in the case of someone like me with no family history,
doctors theorize that it was an auto-immune reaction where my confused immune system attacked my insulin producing cells on my pancreas and slowly killed them off. That was fifteen years ago. I had a period of time especially throughout middle school and early high school when I had real difficulty controlling my blood sugar. Because blood sugar control is affected by EVERYTHING: stress, hormones, sickness, etc.; I had several years when growth hormones kicked in (being a 6’3” woman - I had several growth spurts:)) and could not get my blood sugars to be predictable. Late in high school I got an insulin pump in an attempt to control my blood sugars better which turned out to be a great tool especially in college when schedules change often.
As far as my health today, I am doing well. I have the beginnings of some very mild complications of diabetes, but have been assured that these are either genetic (not-diabetes related) or are simply because I have been diabetic for 15 years. I am generally more susceptible to regular illness (colds, flu) and sometimes have a difficult time fighting them off. This year I had about four months (two months two separate times) when I couldn’t shake sinus infections, but this is not usual. I exercise regularly and test my blood sugar eight to ten times a day. I have a great health care team and see my endocrinologist every three months and my regular doctor whenever I have something not diabetes related going on.
While parts of this trip: adjusting to new time zones, different foods, and non-consistent amounts of exercise, will be challenging to blood sugar control, ultimately I hope to quell the biggest problem I face in diabetes management – worry and stress – which affects not just how I feel mentally but also what and how I eat which affects my physical condition. This year in particular I have found diabetes to be very stressful, especially when I had reoccurring sinus infections that would not go away. My logic said that if I was taking the best care of myself possible (which I was) that I should automatically get better. This is also the same logic that questions why do bad things happen to good people. Well, we all know that the world does not work this way. My faith in God helps me trust that there is something bigger going on in the world and that there is someone that cares for me, but my faith also leaves much room for mystery and if anything, supplies more questions than answers.
Taking this trip is a bit more risky as a diabetic. However, I have a deep sense of peace that I'll come out on the other side of this trip more confident and assured of what I can do. I also, more importantly, have been amazed at how everything diabetes related came together, and can only attribute it to God and His care for me as His child.
Andrea
Diabetes can be genetically inherited but in the case of someone like me with no family history,
doctors theorize that it was an auto-immune reaction where my confused immune system attacked my insulin producing cells on my pancreas and slowly killed them off. That was fifteen years ago. I had a period of time especially throughout middle school and early high school when I had real difficulty controlling my blood sugar. Because blood sugar control is affected by EVERYTHING: stress, hormones, sickness, etc.; I had several years when growth hormones kicked in (being a 6’3” woman - I had several growth spurts:)) and could not get my blood sugars to be predictable. Late in high school I got an insulin pump in an attempt to control my blood sugars better which turned out to be a great tool especially in college when schedules change often.
As far as my health today, I am doing well. I have the beginnings of some very mild complications of diabetes, but have been assured that these are either genetic (not-diabetes related) or are simply because I have been diabetic for 15 years. I am generally more susceptible to regular illness (colds, flu) and sometimes have a difficult time fighting them off. This year I had about four months (two months two separate times) when I couldn’t shake sinus infections, but this is not usual. I exercise regularly and test my blood sugar eight to ten times a day. I have a great health care team and see my endocrinologist every three months and my regular doctor whenever I have something not diabetes related going on.
While parts of this trip: adjusting to new time zones, different foods, and non-consistent amounts of exercise, will be challenging to blood sugar control, ultimately I hope to quell the biggest problem I face in diabetes management – worry and stress – which affects not just how I feel mentally but also what and how I eat which affects my physical condition. This year in particular I have found diabetes to be very stressful, especially when I had reoccurring sinus infections that would not go away. My logic said that if I was taking the best care of myself possible (which I was) that I should automatically get better. This is also the same logic that questions why do bad things happen to good people. Well, we all know that the world does not work this way. My faith in God helps me trust that there is something bigger going on in the world and that there is someone that cares for me, but my faith also leaves much room for mystery and if anything, supplies more questions than answers.
Taking this trip is a bit more risky as a diabetic. However, I have a deep sense of peace that I'll come out on the other side of this trip more confident and assured of what I can do. I also, more importantly, have been amazed at how everything diabetes related came together, and can only attribute it to God and His care for me as His child.
Andrea
Saturday, October 18, 2008
Diabetes and My Emotions
So I have to confess that I don’t particularly like to write about my diabetes. I enjoy talking to others and answering their questions about diabetes but I have never found writing about my experience with diabetes to be therapeutic. I choose to write today because it has been incredibly helpful to me to read other diabetics experiences and thoughts on their blogs. In researching how I would be able to take care of my health and get my necessary prescriptions for this trip I realized that there is very little information out their for type 1 diabetics who want to travel or at least travel extensively. Because of this Duncan and I decided to make this blog in part a ‘how-to/diabetes commentary’ to be helpful to someone someday.
So diabetes and me? I have a love-hate relationship with diabetes. I am fortunate to be able to see the positive affects of having a chronic disease in how it shapes my character and has made me stronger. Lobbying with the American Diabetes Association for increased research funding from the legislature as a Teen Advocate in high school not only allowed me to meet some incredible diabetics who will be life-long friends but it also got me interested in politics/policy/understanding the systems that affect my life. This experience led me to major in Political Science and Comparative Religion in college. I also deeply believe that I have learned through diabetes to be more sensitive to others and observant to the world around me.
However, despite the positive things that have come from diabetes there is no doubt that having diabetes, quite frankly, sucks. In one of my classes in high school I learned of Elisabeth Kubler-Ross's Cycle of Grief which continues to help me explain my emotional life with diabetes. The cycle goes through several stages from the moment of receiving bad news – starting in the stable stage, the person then moves through shock, denial, anger, bargaining, depression, testing, and the acceptance stage. The theory allows for each person to move through the stages in their own time and acknowledges that the person could get stuck in one stage or can regress through stages they have already gone through.
For the most part I spend the majority of my days in the acceptance stage however it is very easy for me to move back into the anger or depression stages depending on what new or reoccurring challenge diabetes produces. Diabetes is always with me. Having been diagnosed when I was eleven years old I have now lived the majority of my life with diabetes and I honestly don’t remember what life is like without diabetes. I am not always thinking about diabetes, many things I do on auto-pilot, but sometimes on those days that require more strength than usual I can find my reserve empty and really struggle to get through the day. I have been fortunate to have a good support system of friends and family who are generally interested in knowing what I deal with and a very supportive husband who sometimes goes through the stages of grief with me, but I also find it difficult to share the darkest times.
Ultimately I take good care of myself but have learned that quality of my (life) time is more important to me than the quantity of my (life) time. This means that I am going to accept dinner invitations, without worrying about what you're going to feed me and what time we're going to eat (admittedly part of this freedom comes from using an insulin pump). I do not measure out all my food and I do not eat at the same time everyday. These are things that may help produce better blood sugar control but ultimately for me would take away too much of my time and effort from some of the important moments of la vita dolce. Diabetes is a personal disease in many ways – meaning that it manifests itself differently in people and that people can have many different reactions and methods to dealing with it. My method is certainly that – my method, and not a recommendation for anyone else. I share all this as simply my emotional life with diabetes in the hopes that it helps you understand me and so that other diabetics may be helped in understanding the context of the decisions I made on this magnificent trip.
Andrea
So diabetes and me? I have a love-hate relationship with diabetes. I am fortunate to be able to see the positive affects of having a chronic disease in how it shapes my character and has made me stronger. Lobbying with the American Diabetes Association for increased research funding from the legislature as a Teen Advocate in high school not only allowed me to meet some incredible diabetics who will be life-long friends but it also got me interested in politics/policy/understanding the systems that affect my life. This experience led me to major in Political Science and Comparative Religion in college. I also deeply believe that I have learned through diabetes to be more sensitive to others and observant to the world around me.
However, despite the positive things that have come from diabetes there is no doubt that having diabetes, quite frankly, sucks. In one of my classes in high school I learned of Elisabeth Kubler-Ross's Cycle of Grief which continues to help me explain my emotional life with diabetes. The cycle goes through several stages from the moment of receiving bad news – starting in the stable stage, the person then moves through shock, denial, anger, bargaining, depression, testing, and the acceptance stage. The theory allows for each person to move through the stages in their own time and acknowledges that the person could get stuck in one stage or can regress through stages they have already gone through.
For the most part I spend the majority of my days in the acceptance stage however it is very easy for me to move back into the anger or depression stages depending on what new or reoccurring challenge diabetes produces. Diabetes is always with me. Having been diagnosed when I was eleven years old I have now lived the majority of my life with diabetes and I honestly don’t remember what life is like without diabetes. I am not always thinking about diabetes, many things I do on auto-pilot, but sometimes on those days that require more strength than usual I can find my reserve empty and really struggle to get through the day. I have been fortunate to have a good support system of friends and family who are generally interested in knowing what I deal with and a very supportive husband who sometimes goes through the stages of grief with me, but I also find it difficult to share the darkest times.
Ultimately I take good care of myself but have learned that quality of my (life) time is more important to me than the quantity of my (life) time. This means that I am going to accept dinner invitations, without worrying about what you're going to feed me and what time we're going to eat (admittedly part of this freedom comes from using an insulin pump). I do not measure out all my food and I do not eat at the same time everyday. These are things that may help produce better blood sugar control but ultimately for me would take away too much of my time and effort from some of the important moments of la vita dolce. Diabetes is a personal disease in many ways – meaning that it manifests itself differently in people and that people can have many different reactions and methods to dealing with it. My method is certainly that – my method, and not a recommendation for anyone else. I share all this as simply my emotional life with diabetes in the hopes that it helps you understand me and so that other diabetics may be helped in understanding the context of the decisions I made on this magnificent trip.
Andrea
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