Cystic Fibrosis Forum (EXP)

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  1. C

    Farewell Dear Heather

    On Thursday August 18th, Heather Rachelle Best of Wenatchee, Washington passed peacefully in the ICU at the University of Washington in Seattle. She was 25 and had fought hard after her new lungs were placed in April. Despite much love and care from family and medical staff, the rejection won...
  2. C

    Patiently Waiting for a Call

    August 18th: Two weeks ago I went to see Heather in the hospital just after she came off the vent again. It gave her parents time off to leave the place, and she and I visited for 12 hours or more. It was good to catch up on things, and I helped her with lunch and a back rub. Some med was making...
  3. C

    Patiently Waiting for a Call

    August 18th: Two weeks ago I went to see Heather in the hospital just after she came off the vent again. It gave her parents time off to leave the place, and she and I visited for 12 hours or more. It was good to catch up on things, and I helped her with lunch and a back rub. Some med was making...
  4. C

    Patiently Waiting for a Call

    August 18th: Two weeks ago I went to see Heather in the hospital just after she came off the vent again. It gave her parents time off to leave the place, and she and I visited for 12 hours or more. It was good to catch up on things, and I helped her with lunch and a back rub. Some med was making...
  5. C

    cure for chronic rejection

    There are lots of scientists and researchers working on the problem, but none of them would grab publicity until it was a reality. Unfortunately, if you hear news like this it is all manufactured by someone like a news 'personality' not involved in the science. When a solution is found, the...
  6. C

    cure for chronic rejection

    There are lots of scientists and researchers working on the problem, but none of them would grab publicity until it was a reality. Unfortunately, if you hear news like this it is all manufactured by someone like a news 'personality' not involved in the science. When a solution is found, the...
  7. C

    cure for chronic rejection

    There are lots of scientists and researchers working on the problem, but none of them would grab publicity until it was a reality. Unfortunately, if you hear news like this it is all manufactured by someone like a news 'personality' not involved in the science. When a solution is found, the...
  8. C

    Patiently Waiting for a Call

    Still on the vent. She was supposed to have had an MRI last night, but I haven't heard if she did, or the results. Some days are just long waits with a phone that doesn't ring! Thanks to all for concern and prayers - I know her family is grateful for everyone who cares about one sick girl by...
  9. C

    Patiently Waiting for a Call

    Still on the vent. She was supposed to have had an MRI last night, but I haven't heard if she did, or the results. Some days are just long waits with a phone that doesn't ring! Thanks to all for concern and prayers - I know her family is grateful for everyone who cares about one sick girl by...
  10. C

    Patiently Waiting for a Call

    Still on the vent. She was supposed to have had an MRI last night, but I haven't heard if she did, or the results. Some days are just long waits with a phone that doesn't ring! Thanks to all for concern and prayers - I know her family is grateful for everyone who cares about one sick girl by...
  11. C

    Patiently Waiting for a Call

    Day 6 in the ICU, and off the vent and breathing on her own. Then later, back on the vent as she tired out. Now Heather's mother says something about an MRI coming to see if there is some toxicity effect of the anti-rejection drugs on her brain. Lungs are working well, although another...
  12. C

    Patiently Waiting for a Call

    Day 6 in the ICU, and off the vent and breathing on her own. Then later, back on the vent as she tired out. Now Heather's mother says something about an MRI coming to see if there is some toxicity effect of the anti-rejection drugs on her brain. Lungs are working well, although another...
  13. C

    Patiently Waiting for a Call

    Day 6 in the ICU, and off the vent and breathing on her own. Then later, back on the vent as she tired out. Now Heather's mother says something about an MRI coming to see if there is some toxicity effect of the anti-rejection drugs on her brain. Lungs are working well, although another...
  14. C

    Patiently Waiting for a Call

    Time for an update. VERY up and down experience so far. Heather has been in and out of the hospital while doing rehab. She needed some albumin, and then turned out to be one in a million who is allergic to it. Her breathing ran into trouble, she lost her blood pressure, and had to go back on the...
  15. C

    Patiently Waiting for a Call

    Time for an update. VERY up and down experience so far. Heather has been in and out of the hospital while doing rehab. She needed some albumin, and then turned out to be one in a million who is allergic to it. Her breathing ran into trouble, she lost her blood pressure, and had to go back on the...
  16. C

    Patiently Waiting for a Call

    Time for an update. VERY up and down experience so far. Heather has been in and out of the hospital while doing rehab. She needed some albumin, and then turned out to be one in a million who is allergic to it. Her breathing ran into trouble, she lost her blood pressure, and had to go back on the...
  17. C

    Scuba Diving and Transplant

    I'm a diver and have worked with training students before, so I have some questions for you: How long ago was your transplant? How is your breathing now? What are your PFTs showing, and when was your last one? Have you had any readmissions to hospital, and what for? Have you ever had a...
  18. C

    Scuba Diving and Transplant

    I'm a diver and have worked with training students before, so I have some questions for you: How long ago was your transplant? How is your breathing now? What are your PFTs showing, and when was your last one? Have you had any readmissions to hospital, and what for? Have you ever had a...
  19. C

    Scuba Diving and Transplant

    I'm a diver and have worked with training students before, so I have some questions for you: <br /> <br />How long ago was your transplant? How is your breathing now? What are your PFTs showing, and when was your last one? Have you had any readmissions to hospital, and what for? Have you ever...
  20. C

    Patiently Waiting for a Call

    Forgot to mention - the waiting area in the ICU was full of CF families. They have done four double txs in the last ten days! The young man who got his yesterday morning was also a no dry run, first call recipient. Fantastic!
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