Lung failure and running?

TheDisneyDoll

DIS Veteran
Joined
Mar 12, 2014
Last year I decided I would start running (walking fast) to try and improve my health. I have Cystic Fibrosis and my lung function was hanging around the mid 40's and I was hoping that the exercise would increase my lung capacity. I began training for and my first half marathon April 2014. I signed up for the Tower of Terror 10 Mile run and the Avengers 5k and half marathon. Last November I completed my first ever half marathon, ad I couldn't have been more excited! I had already registered for the Pixie Dust challenge in May and the Expedition Everest run.
My life was turned upside down in December when I was admitted to the hospital for a routine tune up I was also diagnosed with Influenza A. I've lived with Cystic Fibrosis my whole life, but I had never had the flu. My lung function dropped down to the mid 20's.
I spent the next 5 months in and out of the hospital on and off oxygen usually being admitted for three weeks at a time. I did manage to retrain for a 5k distance while I was admitted in April being discharged from the hospital only a few days before I was scheduled to fly out to Orlando for the Everest run.
It was incredibly difficult but I managed to complete the Expedition Everest 5k and the Tinkerbell 5k. I attempted the Tinkerbell 10k but only managed to complete half of it before being swept for not keeping the right pace. I got home from the Tinkerbell weekend and within a week I was back in the hospital for antibiotics and oxygen.
My lung function hadn't increased it was still in the mid 20's upon my admission, and the doctors were incredibly concerned that at the rate my health was deteriorating I would be in desperate need of a double lung transplant within a year and my life wouldn't extend much longer than 2 years.
I was fortunate that at the end of that admission my lung function increased to 32%, the doctors were still concerned because my body is still not retaining oxygen at a great level though I don't require supplemental oxygen at this time.
I was fortunate that at my follow up appointment my lung function has increased again to 36%. I was so nervous about the appointment because I had been working hard trying to regain the weight I had lost as well as increasing my lung function and I was finally seeing positive results. I had also managed to gain around 5 pounds which is a HUGE deal for me.
I was put in an unfortunate situation though. In February I had accepted an internship at Disney World for the fall semester, and I was not faced with the reality that it was just to unrealistic for my situation, so I resigned my position. I also had to make the decision to quit college. I am paying for college out of pocket so the stress of working enough to pay for classes while taking classes and being sick is just to much. I had to take nearly 3 months off work since I was sick and I can't risk the debt potential.
I recently received a new medication that will hopefully help stop my disease from getting worse. I made a video explaining the medication and I will post it below. I am really hoping this new medications will give me a shot and a long and better life! I am hoping to start training again soon for the Disneyland Half Marathon weekend and the Disneyland Paris Half Marathon next year. The Dopey challenge is a dream of mine and I am really hoping my health will hold up so I can see both my run challenges through!

I was wondering if anyone else with breathing problems has any tips for getting running? I could walk for miles (previously) and I could walk fast, but I could never get actually running. I have a hard time convincing myself that the coughing is good and I need to work through it and I could really use any tips that anyone has to offer :)
Also if there are any runners here what kind of diet you maintain? I am on a strict high fat high calorie diet and I am always looking for more food tips.
 

TheDisneyDoll

DIS Veteran
Joined
Mar 12, 2014
I've managed to stay out of the hospital for the past 3 months the longest i've been out in a long time. My oxygen levels and heart rate haven't been the greatest though, i'm really concerned that i'll need to be put on oxygen while doing activities. It's a bit of an overwhelming thought, this time last year i'd never need oxygen before in my life and now i'm on the border of being dependent of it. I am hoping to run in the star wars half next april but also concerned my health won't improve enough ever to let me runny distance again :P
What a stressful thought
 
  • TheDisneyDoll

    DIS Veteran
    Joined
    Mar 12, 2014
    Well i haven't been back in the hospital, but I was on home IV antibiotics for a couple weeks. My appointment didn't go very well. My lung function has decreased and my oxygen levels are leaving me exhausted but they're to high to be considered for supplemental oxygen. I've been trying to start working out again this week but it's hard, harder than it's ever been. I guess it isn't supposed to be easy though.
    It's getting really discouraging. I am trying to do my best and keep my spirits up but at some point I may have to realize that my goals of running the half marathons next year may not happen. I am going to keep trying though! No point in giving up until the very last day :)
     

    Simba's Mom

    <font color=green>everything went to "H*** in a ha
    Joined
    Aug 26, 1999
    TheDisneyDoll, I've been following your running challenges for a while now. I admire you so much for your strength and perseverance. Whether or not you ever run the Dopey, please know that when DH runs it in January (this has been his dream too), he'll have you running with him in spirit.
     

    TheDisneyDoll

    DIS Veteran
    Joined
    Mar 12, 2014
    TheDisneyDoll, I've been following your running challenges for a while now. I admire you so much for your strength and perseverance. Whether or not you ever run the Dopey, please know that when DH runs it in January (this has been his dream too), he'll have you running with him in spirit.
    That is incredibly kind! I am going to try to do dumbo this fall, out of all my running goals that one is the most important to me. Maybe someday I can do Dopey that would be incredible! I'll keep updating my progress!
     
  • TheDisneyDoll

    DIS Veteran
    Joined
    Mar 12, 2014
    Keeping up the good fight! I will be completing my 2nd half marathon this coming April at Disney World as long as I can raise enough money for my charity :P
     


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