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

Tuesday, August 21, 2007

Greetings from the rainforests of Wisconsin!

I haven't posted much as their hasn't been much to tell. I'm still on a 10lb weight lifting restriction. I forgot to ask if it would be ok for me to ride my bike. Hopefully, after tomorrow it will be okay(if I can remeber to ask...I forgot last time). I've been busy picking blackberries and believe it or not last week it made my right arm pretty sore but, this week I have notice quite an improvement in tolerance and movement in my right arm! I read parts of Deep Survival. I also skipped around reading that book about that Park Ranger who disappeared by Yosemite back in 1996. DO NOT read the back of that book about Randy while alone at your cabin(which is over a mile into the woods & out of phone range) late at night alone! There were parts of it that gavc me the creeps!

I told the insurance lady at Accredo that I wasn't ordering anymore augmentation therapy product till they got everything straightened out with my health insurance company. I've begun being billed for my cancer & breast reconstruction surgery before my augmentation therapy(which started 3 months ago). Caring Voices Coalition was to help me with my copay associated with my augmentation therapy(which was to the tune of over $4000 assistance). It's not that I don't want/dislike my choice of augmentation therapy. CVC is only going to help me out with bills associated with the augmentation therapy and Accredo needs to develope a smarter mouse trap for health insurance providers. I was told from the get go I was approved by my health insurance company. The insurance lady at Accredo told me(and I believe her) that she asked them repeatedly if they need to pre-certify me. They told several times no. No alpha should have to go through this kind of additional stress! I am officially in remission but, I have to save worrying about treating/paying for treatment/surgery for two diseases SUCKS!! What gripes me more than two nurses working for my health insurance company determine whether a proceedure or prescription is neccessary . Most nurses no little or nothing about alpha1 and one really needs to see some yearly/bi yearly PFT results before you will really know whether augmentation therapy is neccessary! No offense intended towards my new nurse but, she didn't know what it was(she was honest with me and said "I'd never heard of it before and I asked my colleagues about it. One of them said they'd heard of it before).

I really want to encourage alphas out there to try to educate people about ialpha1(make others aware). Ways that you might try is through local schools AODA officer, PTA's, school newsletters/newspapers, newspapers and various other media. If you are healthy enough or have some close relative willing who participates in fitness walks or bike treks try to contact the Alpha1 Foundation and see if they could put you in contact the Team Alpha1 coordinator and see about getting a team Alpha1 bike jersey or t-shirt to help raise awareness/funds for research.

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