Cassettes
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I split my Flolan each day into two cassettes. One large (100ml) and one small (50ml). I mix it as usual in the larger cassette. Then I draw out about 40ml of Flolan, and put it into the small cassette. That is enough for about 8 hours, and I carry the pump in a small light pack without ice. I use the larger cassette at night, with about 60ml of Flolan, and regular ice packs. When I get up in the morning, I can remove the icepacks for the last few hours until I hook up the small daytime cassette. It makes the pump much lighter and easier to carry at my waist during the day, and I only need ice packs at night. This makes traveling much easier also.
Submitted by -- Judy Vucci
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You have heard the old saying....be sure to wear clean underwear in case you are in an accident.... in that same thinking, it bothered me that I was the only one that knew when my pump needed to be changed. I am on the 8 hour cassettes and change them at 6:30 am, 2:30pm and 10:30 pm. I have now taped this information to my pump so that in case of an accident, the paramedics will know if the medicine is good and when it needs to be changed.
Submitted by -- Louise Pennewell
Editor's note: Same can be done for the 24 hour cassettes.
Clothing
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I find that my dress or long blouse looks better if I cut slits in them where my flolan fanny pack will lay. I cut the slits and pull the straps through so that the straps are not showing. This way the dress/blouse can lay correctly and not all bunched up around my waist.
Submitted by -- Mary Brown
Ice Packs
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Use a larger gel pack at night. You can sleep longer without worrying so much about thawed gel packs. We found some Rubbermaid® Blue Ice® 7"x5" gel packs at WalMart® for about $1 each. Recently I saw them in a 2-pack for about $2. Some other stores also carry them. They have more gel in them than the packs provided to us by Accredo®. At first glance, they appear to be too large. And, they are too large… Just fold one end over, pushing all the gel to one end, tape the fold with some plastic packing tape so they stay folded, and then freeze them. The bulkier & heavier packs aren't a problem when the pump is sitting on a table beside the bed at night. Karen sometimes gets 12 hours of use out of these "night packs", as we call them. Go ahead. Sleep late tomorrow morning!
Submitted by -- Larry Moody
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I put the ice packs in zip lock bags. This keeps the dampness from getting on me. Also if one of the ice packs springs a leak, all the fluids will stay in the baggys and not on me. I also put a paper towel around the cassette that I am using before I put it in the pouch. This works for me.
Submitted by -- Jana Rivera
Pump
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I am on 8 hour cassettes. My Hickman site is just below my breasts. I take a wide ACE bandage and wrap my entire torso in it. I then take the CADD pump and slip it under the bandage so it is "strapped" to my back. I tuck the extension tubing into my bra and nobody sees a thing!
Submitted by -- Whitney Decker
Traveling
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I flew from ohio to calif. last year. a 5 hour flight. A month a head of time I contacted my doctor and Accredo (pharmaceutical company) for a letter of supplies I needed to carry on plane. I purchased a small backpack on wheels which carried my pump, 2 days of supplies , letters and other things needed for trip. I used a small thermos carry cool for my ice and medication cassette. the small lunchbag ice packs last for about 6 hours. Going through the security I requested to step aside where I was checked by a guard. they reviewed the letters and were very nice. I was even allowed to have the small scissors in the repair kit with me. I also was provided the name of hospital in city I was visiting if I needed medical attention by Accredo. I learned, on this first trip with flolan, that I need not panic, I can handle the change over of cassette and mixing of med.. in almost any location. (restaurant, in car, plane, whatever) It is a part of me. Accredo sent 10 days of meds to my mothers house (no need to pack all of it!!). It was a good experience if you plan ahead. Keeping the med. cool is only factor if taking along trip. airline, restaurant, hotel, will keep in their frig, freezer for you. Hotels will supply a refrig. with the small freezer section. Hope this is of some help.
Submitted by -- Ellen Miller
Editor's note: Being hand wanded in the airport is a necessity. You will always sound the alarm going thru the security passes.
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Instead of taking your mixing board with you, take a roll of aluminum foil.. (plastic wrap works great too) or call Accredo and ask them to send you a sterile drapes with your shipment. Easy to pack and use, aluminum foil is inexpensive if you forget to order the sterile drapes!
Submitted by -- Alex Flipse
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My caretaker/roommate reminded me of the time that I got out of the car and forgot my pump !#$%^&^%$# it was dragging on the ground...thankfully I had it well taped to me !!! Musta been a day that I felt GOOD...on those days I hafta remind myself to take the pump with me as I don't like to wear the pump.
Submitted by -- Joyce Suckow
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When traveling with Flolan, we have used dry ice in a thick (~1¼") foam ice chest for up to three days during car trips. Gel packs re-freeze solidly in about two hours. Our ice chest uses "about" 5 lbs per day. In the cold of Winter, dry ice lasts only a little longer than in Summer. The quality and thickness of the insulation on the ice chest is as, or more, important than the outside ambient temperature when trying to estimate how long the dry ice will last. Err on the side of getting too much dry ice, not too little. Recent prices we've paid range from $0.50 to $2.00 per lb., so shop around. Look up "Dry Ice" in the yellow pages. Dry ice comes in blocks and/or pellets. It doesn't seem to make much difference which we use, but in larger quantities the pellets fit better. Never touch dry ice with your bare hands. Not even for an instant. Damp skin can stick to it, causing loss of skin and/or severe frostbite in just seconds. An oven mitt works nicely for handling blocks of dry ice. A thick winter glove also works well for blocks or pellets. Plan Ahead!… Before your trip, freeze your gel packs in your home freezer before putting them in the ice chest with the dry ice. This will help the dry ice last longer. Make a note of when & how much dry ice you bought, and how long it lasts in your ice chest. Let experience be your guide when buying dry ice for future trips.
Be careful. Dry ice is EXTREMELY cold, -108ºF or colder! A really good home freezer might get down to 0ºF. Be careful when using gel packs that have been in with dry ice for awhile… They also get extremely cold! Much colder than in your freezer. Too cold, in fact… There is a very real possibility of freezing the Flolan in your cassette if you insert two gel packs, frozen with dry ice, in your bag at the same time! Either use only one gel pack at a time, or change out your gel packs at staggered times so that one is partially melted at all times. DO NOT put your spare pre-mixed Flolan cassette in any container along with dry ice. It will freeze the Flolan, destroying it! DO NOT use Flolan that has been frozen!
Submitted by -- Larry Moody
Tubing
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Watch Flolan tubing when cooking and esp...baking! Sometimes I wear a sleeveless cotton turtleneck as my Hickman site is kinda 'high'...then I run the tubing out the right armhole and whether I wear a long or short sleeved shirt over it my tubing is not so noticeable.
Submitted by -- Joyce Suckow
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