The Top10 Things You Should Do If You Test Positive For Alpha1

  • Have A List Of Questions When You See a Doctor About Your Alpha1(If you try to remember the questions you want to ask you may forget half of them)
  • Learn To Breathe Effectively
  • Limit Or Eliminate Your Alcohol Consumption
  • Don't Be Afraid To Be Proactive About Your Alpha1
  • Get Plenty Of Rest(You will likely have a higher oxygenation level)
  • Avoid Sick People(You have a lower immune system than most people)
  • Drink Plenty Of Water
  • Eat Healthy/Avoid Processed Food(Carbonated beverages)
  • Start A Careful Exercise Program/Pulmonary Rehabilitation Program(Your muscles will become more efficient so they won't use as much oxygen and if you have surgery you will likely recover quicker as well)
  • Stop Smoking

Wednesday, September 5, 2007

My attitude is definitely evolving...

The other day I started to think about how Roxanne had said " It's not if you go into remission's WHEN you go into remission!!" when I had my cancer scare this summer. For the last year and a half I've remarked and believed "I'll never win the lung transplant lottery. It's like finding a needle in a haystack!" I realized receiving a lung transplant is no different than going into remission from cancer. Attitude is everything!

My friends have heard me saying more than once "Attitude is everything in anything!"
Why I couldn't apply it to a lung transplant is beyond me. I had no problem believing LVRS was within my reach.

Anyone of us who gets put on a lung transplant list can have the right match. I've met enough lung transplant survivors to realize that. You can look at the transplant waiting lists but, it doesn't tell the whole story. And guess what....the people I've met they've been regular people. They've not been independently wealthy. What they have had is a strong emotional support network. There was a local eye doctor they had a fund raiser for so that he would have enough money for a heart transplant(believe me the county population is 15,000 and it's the poorest county in the state of WI). Given this realization I have chosen to believe It's not if I receive a lung transplant. It's....WHEN I RECEIVE A LUNG TRANSPLANT!!

A good atttitude will serve us well, in two respects:

- it will make our life more enjoyable

- if we chose not to have a negative atttitude we won't get depressed and lower our immune
system which will make us less prone to illness/lung function decline


BreathinSteven said...

Hey Lady!

You've got a journey ahead of you - but it's pretty obvious you have the strength to take it!

I agree with your idea about attitude, especially the part about making our life more enjoyable... You can wallow in your own squalor and eventually drown in self-pity. Or, you can look at some of the things you have and be thankful for them...

I struggled for 40 years with cystic fibrosis. The last three years my lung capacity was around 10% and I was on oxygen 24/7... I was also in CO2 retention -- I wasn't ventilating carbon dioxide sufficiently, which meant they could only give me enough oxygen to survive, not enough to be comfortable because they needed me breathing hard. For three years plus... That was seven years ago.

Now, I'm breathing with the lungs of a beautiful 17-year-old girl from Iowa named Kari. My lungs are 24 now. Kari was a star athlete and healthy as a horse -- she passed due to a cerebral anyurism. In the month before she passed, she told her family twice how strongly she felt about organ donation. I'm lucky enough to have learned about her, and I've met her family -- and her friends. Her beautiful smile crosses my mind throughout every day, and I can see it when I close my eyes...

After struggling so long -- this breathin' stuff FREAKIN' ROCKS!!!

I have some of my story at:

I also contribute to a blog about organ donation at:

I contribute with an awesome guy who got a kidney from his Mom last year. The other contributor, Jenn, is very precious to me... She was one of my donor, Kari's close friends. She's developed an incredible passion for promoting organ donation since we've met. There are two poems about Kari on my ClimbingForKari website that she has written -- a kleenex would be prudent...

What you're doing to support Alpha 1 is wonderful, and important... I've learned that one of the best ways to help yourself, is to reach out and help someone else. It's good for them, and it's good for that whole attitude thing you're talking about. And helping someone else is just a good thing. I'm proud of you...

You take care, kschwabs! I'm rootin' for you!



Steve Ferkau
Chicago, IL

Hey! You're planning on doing that "Hike for healthy lungs" in Chicago?!? I'm thinking about that as well -- It's for the Respiratory Health Association of Metro Chicago (formerly the American Lung Association of Metro Chicago -- long story...) They sponsor the "Hustle up the Hancock" too! If we're both there, I'd love to meet you...

kschwabs said...



Thank you for sharing such an uplifting story! I would love to meet you when I'm down for the Hike For Healthy Lungs!

I just got back from Rochester,MN. I haven't had time to checkout all the websites associated with you. They sound really interesting!

Take Care,