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Old Fri Apr 8, 2011, 10:10 PM
cheri cheri is offline
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Join Date: Nov 2010
Location: Tuckahoe New Jersey
Posts: 243
Thumbs up Travel notes & tips while tranfusion dependent

Hi All~
Well, I just wanted to share my experiences of late...or "how to do the seemingly impossible with MDS!"

I decided that if the end of my life might come sooner than later, what did I really want to do? I love to travel in my camper van and I figured better to use it than lose it, after paying a pretty penny for it and the continual insurance and associated costs of a second vehicle. Just prior to getting diagnosed, I was planning a trip to Boston in the fall of '09 to see my daughter in her new life in Beantown. Unfortunately, that never happened. And I was thrilled to see Christmas 2010 after completely missing it in 2009, as I was in a coma as a result of sepsis. As this winter approached, I began to fantasize about a "road trip" to the south, with warm breezes, palm trees and anywhere there wasn't cold and snow....I have made this trip as a child, a teenager, a Mom-to-be and a Mother of two. It was only natural to go again! Long story short, I grabbed a very supportive girlfriend and away we went. A 3 week adventure from Southern New Jersey to Southern Florida, with stops in Charlestown, Savannah, Jacksonville, Sarasota, and Ft Myers(Pine Island) as our final destination.
Having been on Vidaza for 5 months, I took and break (ok w/ DR) and I did as much homework as I possibly could to research places along the way where I could get the help I would surely need....Despite my extreme planning, Here is what I found ...I'll use the + for positive points; - for the "challenges"--*suggestions for next time!

1) + Without Labcorp*, I would not have been able to do this--they are all over the East Coast and I was able to locate one in virtually every town. I would get my blood tested every 3 or so days, and armed with an Rx from my DR and insurance card, it was relatively easy. (A laptop and GPS a necessity for this)
-The idea of "STAT" is relative to the ambient temperature: the further south we went, the longer it took to get the results faxed to my doctor!* They do NO testing at Labcorp and blood must be sent to nearest lab/hosp for processing (*there was a disconnect between the lab and my DR--I would make sure I had access to my own lab results beforehand next time--took far to long to find out my #s to decide if I needed treatment)
2) -My Insurance--is only a local tri state group and therefore I would not have been covered at a Onc Group and had to use ER's for treatment. The fact that I was not stationary added to this situation. This resulted in a copay of $125 per ER visit and there are associated other charges; ER doctors, etc and who know what when the bills start rolling in...
3) - Going to assorted ER's meant starting from scratch each and every time (history, insurance and describing my need to admissions, nurses, doctors for cbc and or platelets/blood/neupogen) and the worst place to go is an ER in Florida in the winter. Luckily, I didn't pick up any serious germs. Most ER doctors had never heard of MDS! But since I was so prepared, it made their job easy. We had several 6 and 12 hour stints, and getting HLA matched platelets was impossible! In fact, one hospital had 0 platelets at all and we had to go to the next hospital, 2 hours away. I had become spoiled with the efficiency of my little hospital close to home, where I get tested on Monday and blood products are there Tuesday!
4) + My girlfriend was supportive and patient and at times, even she was frustrated with the slow southern hospitals...but I couldn't have done it without her! There were times I needed that 2nd pair of hands and having company was invaluable, and of course, she was there in case of emergency. Being sans spouse, a great travel partner is a blessing! And we met some wonderful medical professionals along the way, and spread the word about MDS!

But WE DID IT! And although about a weeks worth away was spent in labs and emergency rooms, (all in all I needed 5 transfusions) we still had 2 glorious weeks in the Florida sunshine! It was exhilarating and exhausting! And expensive...but it felt wonderful to feel somewhat "normal" for a change.
The reason I am writing this is to encourage us all to think outside of the box!
If you want to travel, there may be a way you can with your Doctors help. Mine is very supportive about my wishes for a great quality of life while I'm here...And next I am planning to head to Boston for Easter!
Feel free to contact me with any questions!
__________________
Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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