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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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Old Thu Aug 2, 2007, 09:25 AM
katherineann59 katherineann59 is offline
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Posts: 41
Coping with work

Hi,
I'm writing to ask how others with this disease cope with working and managing their doc visits and treatment schedules? I am a teacher and I do not have tenure as I have just finished my second year at my current school. At the end of school last year, the folks at the administration building began giving me grief due to the amount of time I have to miss due to doc visits and treatment schedules. For MDS, I have to miss 1/2 day every month to see my doc before I begin my Vidaza treatments. I get 2 shots of Vidaza daily for seven days. In order to get to treatment, I leave with students - teachers are supposed to be on duty for an addition 45 minutes. I also am in stage 4 renal failure due to polycystic kidney disease. As of right now, I am not on dialysis (required at stage 5 renal failure), but I have to miss 1/2 day every 3 - 6 months to visit kidney doc. Please, if anyone has any suggestions about managing work and doc appointments/treatment schedules, I'd love to hear from you. Thanks for all of your support,
Kathy
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Kathy, 47, diagnosed with MDS IPSS Intermediate Risk, Refractory Anemia and Thrombocytopenia both secondary to MDS. 8/06-treatments include 14 shots Vidaza monthly, aeranesp, neulasta when needed also have polycystic kidney disease
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Old Thu Aug 2, 2007, 11:47 PM
Zoe's Life Zoe's Life is offline
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Join Date: May 2007
Location: Logan, Ohio
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Kathy,

Are you in the US? What about FMLA (Family Medical Leave Act)? This should protect your job.

Zoe
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Diagnosed MDS-RA 5q- at age 47 (November 2006). Aranesp 2/07, good response.
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  #3  
Old Fri Aug 3, 2007, 11:48 AM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Here are some ideas about the schedule problems at school:
  • Make sure the administrators know of your appointment dates in advance.
  • Help find other teachers or substitutes to cover any class time you must miss.
  • Find other time to make up the 45 minutes that you miss by leaving when students do.
  • Ask your doctor about adjusting your treatment schedule slightly so you wouldn't have to leave school so promptly after classes end.
  • Talk to the administrators in person to make sure they understand the seriousness of your illness, and that you must get these treatments.
If you're doing these things, I would hope they'll be more accommodating. If not, you might talk to your teacher's union representative about what rights you have.

Juggling your schedule is a problem many of us have faced. Sometimes it's possible to make the necessary adjustments. But when you can't be in two places at once, you have to give priority to your health.
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