Last Thursday was pennies from heaven day since my health insurance company reapproved my augmentation therapy.
Although, I didn't get to spend as much time in Chicago as I would have liked....I still enjoyed it!! There's a kind of energy or vibe down there I always sense. I ate my heart out seeing all those sailboats out on the lake during the Hike For Healthy Lungs. It was beautiful sailing weather Sunday in Chicago. It was a real treat to meet Mr. Mary(Todd) Pierce. It turns out he use to be into sailing so that helped ease the pain of not being able to be out sailing. I was able to discuss sailing.
I've come down with a lower respiratory infection and have been put on really strong medications(levaquin & prednisone). This respiratory infection is as bad or worse then the one I acquired during Strictly Sail. I expect I picked up my respiratory bug from "Junebug" at work. I had originally thought it was a changing of the seasons/pollen issue. I've used 2 vacation days so far because I am sick. I ran almost 100 degree fever yesterday that finally broke this morning. It sneaks back off n' on though. It's definitely not as bad as it was yesterday though! I feel really lightheaded and wrung out. At least I'm still having a conducive cough, though. Every alphas worse nightmare is an unconducive cough!
I get another nurse from Homecare to help with my home infusions. My insurance company doesn't want me to self infuse. The case worker doesn't see how it's more convenient but, is learning going somewhere to have it done is no cheaper. As much grief as this is all causing me....I'm to the point I'm ready to switch over to prolastin at the first of the year and have it done somewhere such as a hospital or clinic. I've spent 3 months fighting the good fight and I'm tired of it. If I lived in a more densely populated area I think this situation wouldn't be playing out this way but, I'm just to far out in the middle of nowhere for accredo nurses to serve me. Every augmentation therapy has it's pros and cons....don't let any drug rep fool you. You have to weigh them out for yourself. just like when you go shopping for a car. I did not choose Zamaira for it's "purity". I chose it because it took less time to administer and it didn't need to be refrigerated. I wanted to learn to self infuse so I didn't have to miss treatments when I traveled and so I didn't have to drive out of my way for treatments(spend $6 in gas a week). Plus, it would have saved approximately $8000 /yr slowing down reaching my medical spending cap.
I have been drafted for a Team Alpha1 bicycle event the first week of June down by Lake Geneva. My friends Michelle & Marilyn have agreed to do the Crazy Legs health walk with me next year. Maybe even my buddy big Tony might even do it with us! Henry "9 lives" Eckert has agreed to do the Madison Paddle & Portage event with me. I just hope he remembers that I don't have as robust a set of lungs as he does when it comes time for the portage aspect of the event!!
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