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

Friday, January 30, 2009

What An AMAZING Day!!

I received a envelope today from angel flight. I guess I expected maybe a half a dozen flyers and received two bundles in an envelope in my mailbox today! I thought to myself....WHAT AM I going to do with TWO BUNDLES of flyers???

I'll tell ya what....A WHOLE HECK OF A LOT!!!

I have one bundle left. In less than 8 hours one was gone and I had leads for a whole bunch of other people to tell about it. I am still sooo excited about this program!!

I guess I need to give the benefit of the doubt and say...I guess I shouldn't be surprised. Most of my friends are either public servants, business owners, business managers or sales people...even so....WOW!!

Wednesday, January 28, 2009

Quote: ....Something I Seem To Live By

"Our Lives Are Enriched By The Unexpected
People We Meet Along The Way"

Tuesday, January 27, 2009

Power steering, Water heaters and Enlightenment!

Shoot out the door to start my truck. Start my truck only to hear an odd clunk, clunk as the engine purrs right along. Pop the hood, get out of truck see oil of some kind on snow below. Dash back into cab turn truck off. Hope I can (drat) use some vacation so I can maintain perfect attendance at work. LUCK OUT!!! There went the power steering unit....but, any expense still beat brand new sticker shock 2.5 yrs ago.

Well, turned on the hot water in the kithen Sunday afternoon and no hot water. Being the genius I am....I went down to light the pilot and I discover it is more fancy(safer) than my Moms gas water heater was. Spent several minutes unsuccessfully to start the pilot light. "rots of ruck"(as my father once said to me)....called the plumbing & heating guy. Lucky enough to have no after hours charge but, foundout two things. One if I would have been....surprise surprise....more patient....I likely would not have inccured any charge....and secondly if I would have had green back would have been even less!!

Met with the gentleman from SCORE Monday morning while my car was in the shop. I asked him why he participated in SCORE and also made the remark I thought the NAFTA agreement brought on some of our unemployment rate(ever the inquisitive one I am). He enlightented me on both, One he did it to give back(SCORE) and he had run a biz in Bangcok. He said it just was too expensive to produce in US but, did still contribute to things being lower cost for americans and american jobs.

I am on chapter 6 in Failing Forward. He explained Peachtree vs. Quickbooks is like comparing Ford to GM. Under normal conditions I would choose GM but, since my observation of GM lately is they are a sunk ship due big talk from union reps and poor management due to GM CEO being over paid for underpeformance. I guess I'll choose Quickbooks(Ford).

Thursday, January 22, 2009

5 in 1

Well, Business Plan, Angel Flight, Donatelife, Unemployment & Mary Williams = 5 in 1.

My well I could have never fixed on my own. Not only was it froze in several places, a knuckle joint was toast and a bleeder valve was gone. As it was the well guy had to enlist his Dads assistance.

Things didn't work out with Donatelife however, I'm still very optomistic about www. ! I have been unsuccessful in reaching a real person at unemployment since shortly after Christmas. I went so far as to get up around 7am to call them. In frustration at 7:30am I called republican representative Mary Williams. She said she had helped out another lady who had spent days on the phone trying to get in. She took down my info, asked me how things were going where I worked and said she would give the information to her staff when they came in at 8:30. They would contact me. I don't remember when they called but, Unemployment called me at 2:40pm this afternoon and got my initial claim processed! Now THAT'S GOV'T WORKING FOR ME!!

I finally was able to get to the library to print out the business plan outline the gentleman from SCORE sent me. I was hoping to develope a 5 year business plan and to me it seems more general. It's a start though!! It could evolve into a 5 yr business plan...I probably just need to be patient. I guess I'm a little too results oriented!

Saturday, January 17, 2009


Here is the link to a PBS show about alpha1:

Oddly enough I know almost all of the people in it. My Pulmonologist is Dr. Hogarth, I have visited with Lorena & Len at different events but, never John Walsh. Not on purpose is it I haven't visited w/ John Walsh but, he is just so busy at alpha1 events I guess.

I'm Still In Shock...At least that's what I think one would call it!

My well is still froze but, my pump isn't fried....but, that's not the shocking fact. When my well pump guy talked to me I told him about my lungs. He said " That's that lung disease...right?" I said yes. He goes onto say "I know a guy who has it. He's 43 years old and he was supposed to be dead 3 weeks ago." I asked him to either give the guy my contact info or give mine to the guy. I will be 43 in February. What's the chances of this happening considering there are only 6,000 of us diagnosed in the USA??? My buddy Bent says "One in a bazzilion!" Most alphas I meet are in their 50's and 60's. WOW!!

All I can say is God has definitely been working some serious overtime in my life! I also heard from someone from SCORE today via email. I meet him on Friday. I told him I thought I needed a devils advocate. Even so...I am most definitely looking forward to it. I spoke to my friends that own the local cafe and they said there is something besides banks to look to for financing. They also surprised me when they said when they went for financing the finacers wanted a business plan but, they never really put one together. I don't think I would recommend that to anyone but, in their case it worked out ok. Without a business plan things can get unraveled or too hectic too fast. Some of this knowledge comes from personal experience but, some also comes from reading/hearing other peoples business blues stories. Also, I am in the midst of reading "Failing Forward". Yah, I know I said Paul Tatums "No Mans Land" then Maxwells "Failing Forward". I followed my instincts and switched things around...and so far I'm REALLY GLAD I did!!

Thursday, January 15, 2009


My woke up yesterday morning to a well with a frozen pipe. At work I heard all kinds of stories as to how cold it was going to get in the next two days. I got in my truck after work and the mirror read -16 degrees by the time I got to Ladysmith it read -13. Heat wave came to mind. Started driving down the road I live and it went back down to -16. Then I thought about it a few really isn't that cold...we've had colder fact the first winter up here I remembered -20 below and wondering wether my truck would start. She just barely did but she was over 20 years old so, she was kinda geriatric!

I've spoken to leadership at Donatelife as well as a couple administration people at Angel Flight Central. I found all of them a pleasure to talk to. Both organizations seem very well organized and am looking forward to becoming more involved in promoting them. I believe each still gives me a platform to raise awareness about alpha1 but, also enables me to make a much broader....far reaching....difference for the good of mankind.

Sunday, January 11, 2009


As the result of a conversation with my sister Johanna I asked on Noreens chatroom this evening about flight help if she tried to get listed at Loyola. Noreen came through in SPADES!! I learned of three non-profit organizations. After everyone left the chat room I went to look at their sites and have volunteered to help . They are a part of angel charity network a 501(c) (3). I learned that sometimes it's not people needing organ tx or flying organs. It's sometimes sick kids to summer camps geared to them or just very sick people needing critical care they can only get far away.

Friday, January 9, 2009

Your an Anomaly...

That's what the first attorney said to me when I called him back after the other two attorneys wouldn't touch me with a ten foot pole! He went on to say he had hoped he could learn some new estate planning tactics from the thrid attorney. The third attorney's receptionist suggested the next time I contact a attorney that I not tell them about my alpha1.

Bill also went on to say "We are just not accustom to someone your age coming in to seek elder law counsel. If you think you can hang in there working for five years we might be able to do some preservation of assets." Elder law varies state to state so, what pertains to Wisconsin may not pertain to your state. I also learned a little more about LLC's and that I could change the arrangement of it at a later date if I saw fit. So, for the time being I am going to setup my farm as a sole proprietorship LLC. I spoke to both my sister Jane who is a sort of business management guru and my sister Johanna who has a masters in accounting(and has done accounting work in the past). They both say I should use Quickbooks rather than Peachtree. I plan to put a poll in the right column of the blog(towards the top) to get other opinions. I intend to leave it there for at least a month because not everybody views this blog on a regular basis!

I'm also going to learn more about a quit claim. Dad quit claimed the 70 to me and his lawyer really didn't explain exacctly how it worked. There is a federal five year look back at property transfers when you apply for I believe social security disability/medicare or SSI/medicaid. If you are single and a young symtomatic alpha like me with assets...please consider addressing how to protect your assets before you become too weak to work. Know how things work in your state.

There is an organization out there called:

A.C.C.E.S.S. (Advocating for Chronic Conditions, Entitlements, and Social Services)

They do not have a web site. Organizations only reference their information such as here:

ACCESS Program4710 Eisenhower Blvd. Suite E-3Tampa, Florida 33634

Their services are free!

Thursday, January 8, 2009

FYI: Symtomatic vs. A Symtomatic & Flutter Valves

It occurred to me that these are all terms many alphas and their loved ones might not be famaliar with. Although, symtomatic & A symtomatic are genereric terms used in any number of medical conditions. I am going to use it as it pertains to alpha1.

Symtomatic = you tested positive for alpha1 and it is actively working away causing deteriaiton of health in the form of liver brochiectsis(sp?), elevated liver enzymes, drops in lung function

A Symtomatic = Well you've tested positive to alpha1. You could be MZ,SZ,ZZ, Nullnull. Your lung funtion is good. Your basically able to continue on skipping through life.

Unfortunately some have the misconception that because you are a "carrier" of alpha1 you will never be effected by it.

I. E. SZ usually are liver effected however I know one who is not but, is on a Transplant(TX) list for lungs.

It wasn't until I went to the third pulmonologist that I was shown & given a flutter valve AKA: Acapella. The flutter valve has reeds in it and you blow into it and they send vibrations back into your lungs that are supposed to help bring up trapped mucous. Mine has a knob on it to vary the vibration. I don't know how others are but, I can tell you they do help.

I am definitely not a dr and I reccomend if you have questions about these things discuss them with a doctor. If he or she doesn't want to answer your questions either ask another doctor or find a different doctor who will answer your "dumb questions". The only dumb thing is the thing you didn't ask.

Sunday, January 4, 2009

Exercise, Marley & Me and Restlessness

Well, I finally exercised at OST. I am terribly out of shape and back to the weight I was before I saw Dr. Hogarth. It's embarassing. Then I think about the fact that I chose to attempt to remain rested this fall during the move to my farm. I can say for the first time in 3 - 5 years I had no trips to urgent care or emergency this fall due to sinus or lung issues. I also want to say that sometimes when I have started exercising my lungs feel tighter, then I start to have unconducive coughs but, after a few days I begin to have conducive coughs. My lungs then seem like they just start working better and better. It would help if I knew where my flutter valve is. This device helps bring junk up out of your lungs. I know it's here's just a matter of finding it. The same goes for some of my food storage tops and bottoms. I have some parts missing that shouldn't be missing. So, I suspect I have another box somewhere...most likely out in the garage!

I went to see Marley & Me at the local theatre. It struck me as I was watching the ending about how restless I have become. Between that and my last attorney conversation I decided to contact SCORE. Hopefully in the not too distant future I will be meeting with someone from SCORE. I used to know what it stood for and they no longer list it because I believe it has evolved quite a bit since the 1980's. I thought the tail end used to refer to Retired Exceutives. It's closely associated with SBA(Small Business Administration).

I will be posting less I believe...especially oscar the grouch type posts anyways!

I Do Not Choose To Be The Common Man

I do not choose to be a common man, it is my right to be uncommon if I can. I seek opportunity, not security. I do not wish to be a kept citizen, humbled and dulled by having the state look after me. I want to take the calculated risk, to dream and to build, to fail and to succeed. I refuse to barter incentive for a dole. I prefer the challenges of life to a guaranteed existence, the thrill of fulfillment to the stale calm of Utopia. I will not trade freedom for beneficence, nor dignity for a handout. It is my heritage to think and to act for myself, to enjoy the benefits of my creations, and to face the world boldly and say:

With God's help, this I have done.