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  1. M

    How many calories with tube feeding?

    I've had a feeding tube for almost a year, but haven't had much luck in gaining weight. For anyone who has had success gaining weight- how many calories per day did you use? how did you take your enzymes with the tube feed? And, if diabetic, how did you handle the insulin with the tube feeding...
  2. M

    Just so tiredzzzzzzzzzzzz

    Are you just tired or low on energy too? Last fall I was feeling more tired and low on energy. My doctors did some blood test and I found out my iron levels were real low. I had some iron infusion doses and began to feel better. Just thought I'd add that to the mix. Mark
  3. M

    Feeding tube question- Part 2???

    A few weeks ago I posted about some pain and discomfort I was with my feeding tube. It ended up being an infection in my stomach where the tube went in. That's all better now. The problem I'm having now is that I cough a lot at night while doing the tube feeding. It feels like the formula is...
  4. M

    Delta F508 & G542X

    I have D508 and G542X and am not Jewish. No Jewish heritage, as far as I know. FYI.
  5. M

    Feeding Tube Question???

    About five weeks ago, I got a feeding tube to help gain weight at night. I use Nutren 2.0. It was fine for the few weeks, then I began to experience pain and discomfort in my upper abdomen near my diaphragm. I had an x-ray done and the doctors told me my bowels were full of "poop". I did a bowel...
  6. M

    'Man Purse'

    One of the extra benefits of being on oxygen is that I can carry some stuff in the pocket of the O2 bag. Since I also have diabetes, I can carry snacks, medicine, insulin, etc.
  7. M

    How many CFers are 55 and older??What is your age if you do not mind telling us? :))

    On this date (9-18) forty-five years ago, I was born with CF. When I was a kid in school, living past thirty seemed like an impossible dream, but here I am still chugging along. My lung function is only about 30% but I still get by okay, with limitations.
  8. M

    annual review

    My lung function dropped about 5% this past spring, from mid 30's to low 30's on a consistent basis. I was evaluated three years ago and will be re-evaluated soon, but I don't think I'm there yet. When my lung function dropped to the low 30's, I could tell some difference, but not much. A...
  9. M

    Have a little fun question for your worst day being hospitalized

    My worst days were about four years ago. I had to have colon surgery. It was quite a painful experience every time I tried to cough due to the dozen or so staples holding my skin closed. The best day was when they took those staples out.
  10. M

    How did your decline go?

    I am 44 and was evaluated for transplant about three years ago. I was not sick enough yet. About four years ago my PFT's dropped to the mid 30's. I'm not sure how high it was before that. I held steady in the mid 30's for about four years, then in April I got sick with something and now I...
  11. M

    Good RTs and postural drainage positioning

    I am in the hospital right now and do the vest with my port accessed, no problem. My port is located on my left side just below the collar bone. There is some pressure on the port when I do my vest, but not enough to cause discomfort. It probably varies from person to person.
  12. M


    I'm 44 and had my first colonoscopy about five years ago. I needed surgery to remove some polyps. I've had two follow up colonoscopies since then. On my most recent, I used Gavilyte-N Solution. I have had no problems with the procedures.
  13. M

    Dog - Yes or No? Please advise

    I have had several dogs throughout my life. I don't know if having a dog has made me sicker or not. The last two dogs we got from the Humane Society and the dogs were over a year old. The dogs were past the potty training and knew some commands. Depending how active you are, it may make sense to...
  14. M

    Going into hospital

    I usually take my own pillow when I'm in the hospital, but each hospital has it's own policies and preocedures. I like to wash down things in my room with bacteria wipes when I arrive (door hadles, remotes, phone, bed buttons, etc.) and I wash my hands alot. There are germs everywhere so just...
  15. M

    Delta F508 and G542X

    I also have the DF508 and G542X combo. I am 44 years old and have been evaluated for a lung transplant, but not quite there yet.
  16. M

    Have you become more introverted and anti-social as your health declines?

    Twistifchoas, I don't know if it's CF related thing, but you have described to to a tee. I am not the talker or social butterfly in our family. When we go places, my wife does most of the talking. I very much do not like the "small talk" or "chit chat". I considered myself a soft talker or...
  17. M

    How is your clinic run?

    I had an appointment yesterday. My appointment time was 1:00 and I was there by 12:45. We do sit in the waiting room for a short time, but masks are available upon arrival. I was taken to the exam room and saw the nurse, social worker, RT, dietician and doctor and was out of there by 2:15. I did...
  18. M

    How many elementary kids take their own enzymes to school?

    I'm 44 and I don't remember there being a nurse in the schools I went to. There may have been a nurse, but I was not required to see her to get my pills. I was responsible for taking my pills all my school years. Looking back, there are times I wish there was a nurse because there were many days...
  19. M

    Coping with Christmas after a loss

    Our first son, Matthew, had brain cancer and passed away on Dec. 19, 1998 when he was three. It has been fifteen years since he passed away and Christmas is still a difficult time of year for our family. We have had two boys since. The first few years were the toughest because of the recent...
  20. M

    Starting the process for transplant... get listed or wait for Kalydeco/VX-809?

    cftransplant- my reasoning for saying that I would probably not survive long after transplant is due to the many articles and findings on the internet regarding cepacia and survival rates, predominately cenocepacia. I have cenocepacia. Here is one I found from 2010.RESULTS:"Two hundred sixteen...