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  1. J

    Hill-Rom vest airway clearance system for sale

    You might want to try www.affordablemedicalequipment They buy and sale vests.
  2. J

    Delta F508 & G542X

    My daughter who passed away did. After DD508 this is probably the next common combination. Also G542X has been traced to the Ashkenazi Jews.
  3. J

    Help needed

    This was years ago. I do remember before diagnosis, she had a lots of stomach pain, I first thought she was colic, but it was non stop. Failure to thrive is also common for CF but she didn't have that problem. She was always in the 50% percentile. She was alway hungry and her first words...
  4. J

    Help needed

    My daughter starting having a prolapse rectum at 20 months. She was diagnosis with CF. Most have no family history of CF. Prolapse rectum is a symptom of CF. She had the most common mutations so her diagnosis was rather easy. The sweat test was the standard for a CF diagnosis, but with over...
  5. J

    transitioning of care

    Probably the biggest issue when transitioning for my daughter is the history and trust that develops with your medical team. They become family. They know you, they know what you will do and what you will not do. The medical professionals had known my daughter since she was a baby and saw...
  6. J

    Port Difficulty

    It's problem time for a new one. My daughter had her first one for 9 years before it failed and she had another one put in. Very strong IVs meds go into the port and they can only last so long.
  7. J

    CF Income Tax Deductions

    Two weeks, to get your average.
  8. J

    CF Income Tax Deductions

    When I used the thrifty plan it was for example purposes. According to the USDA publication, the Thrifty plan is used as a basis for Food Stamp Allocation the Low cost plan is used by bankruptcy courts in determining food expenses. The DOD uses the Liberal plan in determining its BAS (food)...
  9. J

    CF Income Tax Deductions

    The yearly average amount on that plan should be 362.04 x 12 = $4,344.48. Next step is to accumulate 2 weeks of groceries receipts. For example if your receipts totaled $200 for 2 weeks. Your yearly amount is $200 x 26 = $5,200. Then you take your cost $5200 - $4,344.48 (average cost) the...
  10. J

    CF Income Tax Deductions

    The yearly average amount on that plan should be 362.04 x 12 = $4,344.48. Next step is to accumulate 2 weeks of groceries receipts. For example if your receipts totaled $200 for 2 weeks. Your yearly amount is $200 x 26 = $5,200. Then you take your cost $5200 - $4,344.48 (average cost) the...
  11. J

    Where do you keep all your medical equipment and medicines? And where do you do them?

    we used a plastic rolling cart with about 5 drawers (different sizes)
  12. J

    CF Income Tax Deductions

    You should be able to get a yearly summary of your cost (out of pocket) and well as your Insurance cost from your Pharmacy. I know CVS as well as Walgreens does this.
  13. J

    CF Income Tax Deductions

    I used actual receipts for 2 weeks. There are 52 weeks in a year. 2 x 26 = 52. (That is where the 26 came from) The 2259 was a rounded number from $2258.88. I use rates from 2011. They were from the thrifty plan. I chose the weekly rate of $36.20. (this came from the USDA 2011 form)...
  14. J

    CF Income Tax Deductions

    I did this back in 2011. I went to the USDA website and got the "Offficial USDA Food Plans: Cost of Food at Home at Four Levels, U.S. Average 2011." It uses your age - gender group. There are 4 levels, and a weekly cost and monthly cost. You need to decide which level, age group you will...
  15. J

    Won't take medactions

    RobbieKay: My heart is with you. Last year this time I was were you are now. I will be praying your son gets his miracle.
  16. J

    will klds,have same mutation

    YES. But their other genetic makeup and as well as their environment and compliance with treatments will determine how sick or healthy they become.
  17. J

    Enlarged spleen

    My daughter had an enlarged liver and extremely enlarged spleen. Anytime she had procedures done they gave her platelets. She did well with those procedures. Low platelets will always be an issue for you. We were told the tips surgery could cause problems or even prevent a liver transplant in...
  18. J

    CF liver damage in a 10year old

    My daughter passed away March of this year at the age of 28. She had an enlarged liver and extremely enlarged spleen. She was put on actigall around the age eight. She too remained largely unaffected symptom wise. She was told to be careful of her abdomen. Her sports consist of soccer...
  19. J

    Coping with Christmas after a loss

    My beautiful daughter 28 yrs old passed away this year on March 7. So this will be my first Christmas without her. Sept 12 was her birthday. Her birth was one of the best days of my life. Instead of dreading it our family decided to celebrate it. We cooked her favorite meal. I made her...
  20. J

    vest wanted

    You might want to try affordablemedequipment.com They sell used Hill-Rom vests and they do warranty them. Good Luck
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