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

Thursday, July 24, 2008

It's Official!!

I have changed to a younger pulmonology doctor @ UofC. My previous pulmonologist at Mayo. Thought that complaints of excessive tiredness & phone calls in regard to whether or not she should be put on Predinsone should be ignored. On top of that the last time I went to Mayo. They didn't put a pulse/oxy on me, check my weight or listen to my lungs before they switched one of my inhaler meds...sealed the deal. They got fired!!

This recent vist w/ a pulmonologist was the first time over the years I actually wished I'd had someone in the room w/ me! I likely remember everything but, wish I had the insurance policy that insured I DID!! I have a ENT appointment, eventually a sleep study, a VO2Max, a arterial blood gas test(complete with wrist being numbed up[followed by needle stick and catheter insertion]), three blood draws and a sleep study(me might need one of those machines that helps a person have a great night sleep...I think they are called a c-ap[ I think that's short for sleep apnea]?).

To some of you this might sound terrible but, to me it's one of the sweetest sounds I have ever heard! Three weeks ago my job appeared on the jobs for bid board. I thought buying a house was a wasted pursuit. And just what was I supposed to do with the rest of my life after being an active person my whole life( or in my Mom's words: "You were hyper but, not the kind of kid a parent worried about.") ??? I have actively been looking for a house but, it seems to always be the basement that rules a house out. Having a house basement recertified I learned today doesn't really completely eliminate the mold mildew only covers it up( they come in spray the walls of a basement with a bleach/water mix, let it dry, then paint over it. That doesn't rule out mold and mildew in the timber.)


Anne said...

Hi there,
I'm an Alpha from Sweden. I'm 38 yo and I have 2 kids. Just curious about your tiredness. It's so f***ing hard getting out of bed!!
At the moment my FEV1 is 35% and I have no need for O2. I was diagnosed January this year.
Is your Alpha progressing quickly or more moderat? I have been talking to the transplant team so I know what's waiting for me in the future...
Are you receiving augmentation therapy? Is it helping?

I'm sort of desperate and would like to get in contact with you.

A big hug is sent your way


kschwabs said...


If you go to my profile there is a link to my email where I can be reached. My older sister is a zz like me. Every alphas story is different. When she went on augmentation therapy she stabilized for 4 years. I have never stabalized but, I seem to be able to do quite a lot compared to other alphas. Please feel free to contact me and also try to hop into Noreen's chatroom Saturday nights around 9:30 CST. The link is at


noreen said...

Hi Anne,

Have you visited this Alpha-1 support web site for Sweden?
They might have some resources for you too.

Kate is correct. Saturday night chat is another avenue. We meet every Saturday at 9PM CST. For you it might be very early in the morning or late at night for that time zone. Won't help your tiredness, in that case.

I wish you well.