Recent content by TarHeelBlue2007

RytheStunner is correct, your new lungs have the DNA of the donor, and since the donor does not have CF, the lungs you get have 2 normal, functional copies of the CF gene. Thus, your new lungs do not have CF. However, since the lungs were the only things transplanted, the rest of your body...

Hi Lena Bean, Sounds like you're in a real rough patch right now, which is definitely unsettling! Responding to a few things you said above: (1) "Anyways. I'm terrified right now. I really need some support that I can still have some hope of living the life I wanna live. I want to be a Mommy...

Hi enzo, The replies above have said a lot, and I echo a number of points that were made. In high school and even college, I was super thin (despite working out a lot), had a relatively high voice, and little facial hair. CF or no CF, everyone matures differently and at different rates. A...

Ditto for what CrisDopher said above, and my own take: Running a marathon is indeed a stress on the body. Your son's doc said (quoting you): 1. "...said it isn't healthy." It is well-established in the CF community that exercise is beneficial for lung function improvement. While I concede that...

Domv06: couple things... (1) my biggest recommendation is to call your OLD CF docs and see what they think over the phone (granted, it's over the phone)...they should be able to find time to chat with you. (2) not sure if this applies to you, but look into either COBRA insurance or getting onto...

Hi Sue, A few thoughts... (1) your pulse oximeter might be out of calibration (you had said you calibrated it w/ the hospital one...how long ago was that?) (2) your pulse oximeter might be cheap (don't know what you have) and thus may not accurately measure once it gets out of the near-normal...

I've asked clinician-scientists this question, and the overriding principle is that you want to give the medicine time to work. My old routine was to do albuterol, pulmozyme, hypertonic saline, and then tobi (if I was on it), but I was told that by doing hte hypertonic saline immediately after...

I've basically got a personal trainer/coach. he knows i have cf and thus tries to keep me working out consistently. Biggest bits of advice: (1) Do something you enjoy for exercise...it might be hard at first, but the 'fun' part of it will be the biggest thing to help you stick w/ it over the...

Bill raises a good suggestion re: reviewing your enzyme intake, and what the docs say you should be dosing. Just double check that you're on the correct dosage (but have them base it on your old weight). Two other things to mention...exercise is always good to help increase appetite and for...

I'm reposting a reply I made a few weeks back to someone regarding college advice...their main question was about roommates, but I also gave a few pointers on college in general based on my own experience. Kosdancer, I'll message you, but that's really cool what you're looking to do! I...

I also do a lot of endurance work and know how much exercise helps. Cheers!

You said earlier that "...There are no financial scholarships for CF." You might want to check out the Boomer Esiason Foundation, which awards a number of scholarships to CF patients. Opportunities can be found at http://www.esiason.org/thriving-with-cf/scholarships.php . Best of success to you!

Great to hear about so much exercise! I do a lot of running and other endurance sports to keep my CF in check. Pace depends on the distance and if I'm trying to go hard that day...can be anywhere from 7:15 to 9:45 per mile. I think I went 5:15 in a mile at a track meet once (w/ track spikes)...

Nice job! I did a Tough Mudder last fall, which ended with the electric shock...don't let that scare you off doing another mud run, it's not bad at all...I've gotten worse shocks from opening my car door in the dead of winter. Keep up the exercise!

Exercise has been a mainstay of my CF management for years, and I regularly compete in endurance events (finished my second Half-Ironman this past May). I agree w/ the above posts...exercise acts to strengthen both the respiratory muscles and your overall physiology. The key is to not over-do...