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, November 28, 2007

I Wanna Be Victorious Every Week!

Coach Barnabo in high school coined the phrase "Ya Gotta Wanna!" Well, I got plenty of wanna but, I seem to have had a failed self-infusion. First I blew the vein then the second time the vein collapsed. I spoke to the head nurse at Accreddo today and she said I wasn't drinking enough fluids if my veins were collapsing. GRRR!!! I drink between 60 and 80 oz of water a day.

I was victorious in another way though. I did get my last disability claim to go through finally. So, I should see a check reasonably soon. I am already thinking about my affirmation walk for 2008. It's a toss up between two. It depends who I can get to do it with me. Two events in question are both team events. One is in Southern Wisconsin...the other is in Northern Illinois. It was interesting to go read my post on here from June, July & August. It's incredible to read how hightened my emotions were and my reaction to everything.

It looks like I'm going to Strictly Sail in Chicago after all. Woo Hoo!! Hopefully between now and then I will have acquired a nice thick long wool coat down there. I did see some last year at the mall in Janesville but, they didn't seem that thick. I' ve always wanted one. As Tony likes to always tell me "It's Chicago! We'll find it!!"

Thursday, November 22, 2007

I'm Thankful For!

When I lived in Claremore, Oklahoma I became friends w/ the Widneys and at thanksgiving they would go around the room and everybody had to say something they were thankful for that year( and when it came to the children...that could be quite comical). So, since I have the day off I thought I would post a list of what I was thankful for.

1) My first nurse Sue who made the intimidating transition to self - infusing smooth
and near painless!

2) For my breast cancer being detected early helping me to avoid radiation (which would
have sped up my lung function deteriation)

3) That my nephew Morgan returned from his tour of duty in Iraq SAFE & SOUND!!!!

4) For my augmentation therapy being approved by my health insurance provider( I was so,
scared I would have to pay for it w/ money earmarked for a healthy home

5) Believe it or not the astronomical OT I've been receiving lately that is helping me pay
medical bills that keep popping up from this last summer

6) For out of this world friends, family & neighbors!!!

7) For being able to attend the alpha1 retreat this last spring and the national alpha1 convention
where I learned a lot more about alpha1 and care/prevention of deteriation of my lungs

8) For still being able to bicycle or walk w/o supplemental oxygen

I can go on but, I need to get some shut-eye. I've had no upper respiratory infection since shortly after the Hike For Healthy Lungs....with adequate rest I have high hopes of keeping it that way!!

Happy Thanksgiving!

Saturday, November 10, 2007

Books, Brakes(breaks) & ATTmosphere

What a combo, huh! Well, everybody knows Katie LOVES books(Thank You Mrs. Deeg whereever you are...last I knew was Chattanooga,TN). Mrs Deeg turned the hatred for reading Mrs. Frieberg created inside out! She turned me onto "The Boxcar Children" and I went from a 5th grade reading level to a 12 grade reading level in a little over 3 years. I also gained a beyond 12 grade comprehension level! I bought the book Too Big To be Small But, Too Small To Be Big and the Bible(KJV).

When I was in college I made a commitment to read 3 pages a day(well sort all averaged out) day I think I only managed 1/4 or 1/2 a page...a lot of begots(sp?). It was actually really interesting. There are a lot of great stories(parables) in the bible. My favorite is King Soloman's Wise Ruling(I Kings Ch 3 vs. 16 - 28). Back then I found Genesis & Psalms quite boring. I guess I've become more tolerant w/ age as I don't find them so irritating! I am happy if I read 1 page of the bible a night right now!! I don't read as fast as I used to. Plus, I'm extremely tired. I don't turn down OT or much voluntary OT.

Breaks(brakes)...what's that about? I was told doing rotor brakes was much easier than drum brakes...NOT!! I wound up calling a farmer friend of mine over to help when I attempted them. We proceeded to break the corners of the star bit off and ruin a 3/8 socket rachet. After getting only 3 - 4 bolts loose he concluded I would be better off putting it back together and letting an automechanic work on them...I agreed. However, I was thankful as I suddenly have the opportunity to work all kinds of OT!! I now have paid 2 different automotive shops to fix my brakes. One did the front and another did the back.

ATTmosphere which I believe is a division of Aralast or at least somehow related to them is for all Alpha1 sufferers..not just Baxter/Aralast Patients. Jules from there advocate program was an absolute godsend. She helped push through self- infusion w/ my health insurance provider. I have been so frustrated w/ Homecare. I have had 2 successful self- infusiopns in a row and have been able to have my infusions at a consistent time! Plus, it saves about $8,000/ yr insurance cost. I don't have to worry about procedure not being followed properly..I. E. no Benadine(sp?) used before insertion of needle or no small bore attachment being used or worse yet overall procedure & common sense not being followed/used.

Although, I am not likely to post much for the next 3 - 4 months(busy schedule) life for the most part is going in the right direction.