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Living with Illness Coping with disease, getting help, dealing with family, staying optimistic, quality of life, hospice care

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  #1  
Old Fri Apr 8, 2011, 11:10 PM
cheri cheri is offline
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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!
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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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Old Sat Apr 9, 2011, 02:15 PM
cathybee1 cathybee1 is offline
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This is a wonderful story of having a dream and the determination to see it through. Congratulations on your road trip, Cheri.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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Old Sat Apr 9, 2011, 09:43 PM
Greg H Greg H is offline
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Cheri,

Congratulations! It took guts to make that trip. Thanks much for sharing the story.

Take Care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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Old Sun Apr 10, 2011, 02:35 PM
Snuuze Snuuze is offline
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Great story and great attitude. I've been frustrated by the possibility of no more travel, so I'll keep your story in the back of my mind. Finding transfusions isn't an easy task, though, is it?
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Sue, age 72; Dx 6/2010 MDS Int-2. Revlimid unsuccessful, began Aranesp 10/2010; additionally Dx PNH 2/2011, Soliris added 3/2011. ATG 5/2011, Cyclosporine 5/2011. Nplate 10/2011 to 10/2012 . Exjade began 12/2013 due to high ferritin level, discontinued 3/2014 because of increase in creatinine.
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Old Sun Apr 10, 2011, 08:21 PM
cheri cheri is offline
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Location: Tuckahoe New Jersey
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Transfusions while travelling....

Hi Snuuze~
Well, if you go to the emergency room, eventually you will get transfused. (may take 12 hours!) In the first ER, I was told I needed to wait 3 days to get HLA matched platelets! Clearly, that was not an option as my platelets were already at 12! But in that case, I took the run of the mill variety and guess what...I got a bump up to 75K, my biggest ever! (Some southerner had some powerful platelets!)....I continued getting the garden variety during the trip--didn't seem much different than HLA at home. If you were going to a place to stay for a week or two, it would be easier to set up. It wouldn't have made a difference for me as my insurance would only cover the ER visits...
So, maybe it can work for you too!
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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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