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Thread: Times are a changing...and I DONT like it!

  1. #1

    Times are a changing...and I DONT like it!

    Used to be, keeping weight on was no problem. In the last couple of months I have gone from being between 120-125 (which is where Duke wanted me) to 109. Not really sure how that happened, but my breathing has sucked most of the time and I think I am just burning tons of calories just trying to get air. Another first of my life. For 45 years I never coughed up blood, now, this morning, bloody sputem all morning and afternoon. Gosh that sucks. Times they are a-changin'. Used to be bicep curls with 20lbs wasnt a problem, now I'm struggling with 15lbs and often opt for the 12. Could run a 10K a couple of years ago, now I walk a mile on 6L. *sigh* Someone tell me it will get better after transplant. Please. I want to run up a mountain again and scale cliffs.......

  2. #2
    Senior Member
    Join Date
    May 2006
    I'm sorry you're having problems. In my younger years (I am 49) always weighed about 125 but after having my son 17 years ago, my weight slowly declined until my averages was 115 or so. Up until 2 years ago, I never even used enzymes. I use to always struggle to keep my weight down but the last year with all the exacerbations my weight has been a yo-yo. Like you, my transplant team wants my weight at 120 and I struggled to get there and last year actually dropped to 103 so they had me get a feeding tube to do tube feeds overnight while eating normally during the day. I did get my weight back up to 118.6 and got sick and lost again and now I am back up to 116.6.

    As far as the coughing up blood, I haven't done that for several years. I had a period of time about 10 years ago that I did frequently but it stopped.

    It sounds like you still stay active which is good. I know I have to push my self daily to exercise. I struggle with that part. I walk on the treadmill 5 days a week and it seems as though every time I start getting myself built back up I get an exacerbation which knocks me back down and I have to start all over again.

    I have heard people say that after transplant, they can remember how it felt to just be able to breathe. I am sure you will be back to "running up mountains and scaling cliffs" after your transplant.

    I will be praying for you.

    49 years old, DD F508, FEV 23% & FVC 46%, culture burkolderia gladioli, diagnosed at age 7, 1 child by birth & 1 adopted, 2 siblings-1 with cf and 1 without

  3. #3
    Thanks Julie. I was looking back over my post and frankly, I'm a bit embarrassed. I was distinctly whining, and I hate that. I was going through a 5 minute bout of self-pity and I happened to be logged onto this forum. Sorry folks. I'm over it now. But Julie, I WILL take any prayers you would like to send.

    And yes, I stay as active as I can, rehab 3 times a week, and activities outside of that, plus all the weird assortment of stuff that every parent is expected to do in this day and age. I also love singing in the church choir. (with tons of oxygen)
    DDf508, 46 years old, 2 daughters (ages 16 and 12). CFRD, GERD. Married 20+ years. Transplanted at Duke 10/12/17.

  4. #4
    Senior Member
    Join Date
    Sep 2016
    There isn't anything to apologize for. That's why this forum is here to help and support each other. We're here to learn from each other. You have every right to be pissed off and feel sorry for yourself. That means you're not holding anything in and letting it out so it doesn't burden you. I've learned very quickly that really only other CF people can trump other CF people when it comes to how we're doing. I have a difficult time whining about the things I'm going through and expressing them. That doesn't help. When big changes occur, it sucks. CF sucks. But it does sound like you're doing everything you can to stay active which is great. My thoughts and prayers are with you.

  5. #5
    Senior Member
    Join Date
    Jan 2015
    I had a nurse once mention off-hand that weight loss is a common symptom of CF-related diabetes. The more common infections and weakness you mention aren't atypical of advancing CF but could also be exacerbated by blood sugar control issues. Have you had an oral glucose tolerance test lately? If not, maybe consider it your next clinic visit.

    Also the coughing up blood is so visually visceral, an emotional or whining response is warranted. Occasional short-term whining and self-pity is 100% acceptable in my book. Just don't get stuck there.
    Thirtysomething Dad of three (IVFw/ICSI), Mormon, Engineer in Utah.
    I was dx at 1 yr (failure to thrive), D▲F508, FEV1~94%, PA and MSSA, PI.
    2 brothers w/CF, 3 siblings w/out. My wife and parents are saints.

  6. #6
    Ethan, Yes, I have CFRD. I put ON weight though when I was developing and lost tons of lung function. No one could figure out why since I was distance running 6 days a week, swimming, and biking. My A1C was normal, and my late morning glucose readings were normal. But I did some research and realized that I alsmot certainly had CFRD. Took my blood sugar 10x and day for a month then showed the doctors the results. I was immediately put on insulin. I had sugars going up in the 300-400's on a daily basis.......and it was not caught by routine screening since A1C can be annoyingly normal in some with CFRD. (and my doctors appts were always right before lunchtime, so I had essentially been fasting long enough from a 7am breakfast that my blood sugar had normalized)

    And dont worry. I dont get stuck in the pity party. Roughly 5 minutes of it is more than enough to disgust myself. That's not my thing.
    DDf508, 46 years old, 2 daughters (ages 16 and 12). CFRD, GERD. Married 20+ years. Transplanted at Duke 10/12/17.

  7. #7
    Sometimes hormones can play a part in inflammation. I certainly had times in my cycle that I was more SOB. Thought I would mention it, since perimenopause is the worst. I am 51 and now I am starting to gain weight...not sure if I like that!

  8. #8
    I can't tell you 100% it will get better after transplant. Everyone has different outcomes but the majority of the post transplant stories I have read about are successful. I'm Facebook friends with several adults who have had amazing lives after transplant. Myself included. Keep your head up! Hope is always a good thing to have. Attitude is everything.

    AMBER 26yrs CF (Double F508DEL) Married
    CFRD, Double Lung TX 3-13-07, Kidney TX 7-2-07
    G-Tube, insulin pump, & cochlear implants

    Amber's Blog- A Creative Newmie

    God is within her, she will not fall -Psalm 46:5

  9. #9
    Junior Member
    Join Date
    Oct 2016
    I agree as well positive attitude is a main factor in my everyday life as well, I admit I whine occasionally, about 10 yrs or more my doctor suggested a trip to UNC for a possible work up for transplant later on... well a lot of different things went on and I never went low enough in numbers, which I still don't understand why you have to be at emergency level to be considered. But after I left and came back home to NY my next clinic visit I told her to take my name off the list I think there was a 6yr. wait.? I said if it comes about I want to lungs to go to a younger person. I was never a out door activity person. I enjoy walking, reading and most of all organizing. I've could of been part of the California Closet, but they took my idea. Good Luck, be patient, and positive. I had my 62 birthday in Dec 2016.

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