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One of the most important things to learn with medicine, is you MUST listen to your patient.
Particularly those of us with CF. We have lived with our diseases and know our bodies. No,
we aren't doctors, but some of us should have honorary degrees with all we know about medicine.
Listen to your patients. Hear what they tell you. Learn from their experience. Keep your
minds open, just when you think you have it all figured out, one of us will stump you. You'll
learn from your patients. We are WHOLE beings and must be viewed as such. All of us will
be individuals with our CF and its progress. Remember that, and treat each person.
-- Shana, 27 years old with CF, registered nurse
Be our partner
Dear Soon-to-be Doctor,
Please repeat after me, "I don't know it all, here's what I think, what do you think "we" should do?"
My daughter lived 34 years with Cystic Fibrosis. She lived through it all: Diagnoses in the
late 60s, collapsed lungs, Pleurodisis and a double lung transplant. She had many fine Doctors
but she "truely loved" only her first and her last Doctors. They shared one trait in common.... The ability to say the above phrase (and mean it). No Doctor knows it all, and patients realize this a lot sooner than you suspect. Please learn to work "with" your patient and their parents, so that the "we" in the above statement really means the best care for the patient. Thank you for caring about Cystic Fibrosis.
-- Fred, Father of Angel Barbi, ("Empress Barbi" 11/13/00, 34 yofwcf, 115 days post TX)
"None of you will ever be sorry for the things you did with your child/spouse, you'll only be
sorry for the things you didn't do." "Been there, and sometimes, didn't do that," (and wished
we had.)
Thousands with CF are over 50 yeas old
New medical students should know that there are thousands of patients with CF who are over the
age of 50 (I'm 71) who need doctors with the knowledge to treat them. Too often, the bogus
information from the CFF that the age of demise for CF patients is around 32 years, and that
only children have the disease is all the information doctors and med students get.
-- Hal, 71 years young with CF
What I'd like to share about CF and hospital stays
My husband was recently in the hospital for a "tune-up" for Cystic Fibrosis. He received
antibiotics thru a PICC line. We were really shocked to see how little the medical staff knew
about CF. Most were not aware that CF is genetic or even why he was there. The nurses were not
familiar with PICC lines or how to care for them, resulting in his PICC line clotting. It had
to be taken out and another put in. The nurses, respiratory therapists, housekeeping staff,
etc., were not concerned with cross-contamination issues. The respiratory therapists wanted to
reuse nebulizers, the hospital room was not clean, and very few medical professionals washed
their hands upon entering the room unless we asked them to. Doctor’s orders were not followed
correctly. The Vest Machine that the RT brought my husband to use for his airway clearance did
not work, and they never brought another one. I think doctors should be aware that their
patients are not always getting proper care while in the hospital. Doctor’s orders are not being followed carefully. We feel that my husband received better care at home with me and the home health care nurses than he did in the hospital.
-- Nancy, wife of Jim, 33 w/ CF
Nutrition, Vitamins, Herbs, and Supplements
I wish I could get more guidance from the medical staff on how herbs, vitamins, minerals,
even alternative therapies could be used to enhance my daughter's life, minimize symptoms,
enhance the effects of medication. There are supplements and herbs that many use to decrease
inflammation, enhance the immune system, etc. These folks swear by these therapies but they
aren’t part of the medical community. There are many claims in many different forums. Who
knows what can be believed, what is hype, what is just a plain lie.
It frightens me to think that to utilize these things for my daughter, I will need to search
unknown web-sites, utilize unknown sources, and pursue therapies that likely never get rigorous
scientific review. It also frightens me to think that I might miss an opportunity to prolong
or improve my daughter’s life because I didn’t pursue some of these options. The medical
community has learned enough to know that dieticians and nutritionists need to be part of the
CF team. Please, care and learn more about how food, nutrients, vitamins and minerals (or theirlack) can cause or minimize symptoms, respiratory infections, etc.
-- Sharon (Mom to Meghan, 23 months old who has been diagnosed with CF)
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