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

Monday, April 30, 2007

Mag lights and crescent wrenches....

What the heck do they have in common! I was coming home from Rice Lake a couple weeks ago and I thought about both. I know that non-alphas as well as alphas read this blog.

I was cresting this hill after dark and at the bottom there were four cars pulled to the side one of the drivers had a good flashlight. At the bottom of this hill there is a pond and that was where they were flashing the light. I know that until I moved up here I never traveled with a flashlight. I have thought many times of investing in a Maglight flashlight! I know there is a reason officers hold flashlights the way they do(by the neck) when they approach you in a vehicle and that maglights are pretty sturdy.

I also know that when I would return to college in Oklahoma my Father was a strong proponent of driving until you were too tired to drive any further and drive until you get to a convenience store(park underneath a street light or) or a rest area. He used to brag about how he had stayed up for 27 hours when he was 29 years old and was driving his second load back from Virginia from Wisconsin when he began to see double lines in the road. I used to drive until I thought I was going to fall asleep. I then would Pull over, lock the doors, throw my carhart coat over me and sleep with a crescent wrench concealed. Only once did someone wake me in my truck(I was working double shifts at two different Mickey D's). It scared the heck out of the guy that woke me because the first thing he saw when I awoke was the crescent wrench!!

Investing in a mag light can either save your life or save someone else's life. I would strongly recommend that you invest in one. Just remember...if you are using one to protect yourself, always hold it up by the neck(by the light)so you can use the other end to protect yourself from a would be thug(IF needed). Up here in the sticks that is still a non-issue but, I know others of you live in big cities(a whole 'nother animal)!

Also, speaking of protection.....I passed muster with the makers of RoadID! I just don't seem to have enough motivation/time to get it up loadedI(all the codes in place)

Denny W. emailed mewith the recommendation that: I should tell somebody where I'm going and when I'm coming back. There is some merit to that in more congested areas/long rides!! I don't plan to unless I'm going on a real long ride(25 - 80 miles). I have considered stashing my RoadID in my shoulder bag and telling the Bruce and Weyerhaeuser fire dept people that is where I intend to keep it. I was thinking the other day that not all people are upstanding and that if I put it on my wrist someone who accidently hit me might try to come back and snatch it to hide my identity(they might not realize I'm friends or an aquaintence of most of the police forces and fire dept volunteers in the area). I also am thinking of buying an additional shoe RoadID.

I did manage to get some free strawberry plants planted and garden tilled w/ my horse troy-bilt tiller today. I did 10.84 miles yesterday and 4.62 miles the day before. I also got my kodak z710 digital camara software installed on my CPU last weekend....I just need to figure out how to use it in conjuntion with my easyshare dock or the cord that hooks up to my camara!

Saturday, April 28, 2007

To date...or not to date?

Although, I was diagnosed as a ZZ alpha1 four years ago that was not the over riding reason for my decision not to date until a year ago. Many of my friends with children have said to me "I could walk outside today and get hit by a car! You are wrong to do this to yourself! You are punishing yourself for something you have no cause to punish yourself for! You should really reconsider your attitude about dating, Katie."

So...I have! Am I entitled to be scared? Gee, I hope so!!

You should laugh about this!! I sure did!!

I went to www.bigchurch.com. I did there personality survey and I am classified as a ESTP(Extroverted Sensing Thinking Perceiver) "Wheeler-Dealer" and my supposed ideal match is either another ESTP(Extroverted Sensing Thinking Perceiver) "Wheeler-Dealer" or ENTP(Extroverted Intuitive Thinking Perceiver) "The Innovator". I called my friend Michelle(who used to work with me at "Trailers" in Evansville) to ask her opinion on the personality profile of me and her response was...Yes, I agree totally. She said yes in one of those....Doh! How could you not realize that, KATE!!

Friday, April 27, 2007

Alpha1 facts to sink your teeth in!!

-It takes an average of 7 years and 5 doctors before someone is finally diagnosed w/ alpha1

-It has been and still is commonly misdiagnosed as allergies or asthma

-It frequently doesn't show up until someone is in there 30's or 40's if they are lung-affected

-It is most easily diagnosed in infants if they are liver-affected

-It can effect (affect?) the lungs as emphysema, the liver as cirrhosis, and in rare case the skin as panniculitus

-1 in 2500 people test positive for severe alpha1 (ZZ & Null Null)

-For those severely affected it can cost them health or substantial amounts in co-pays for augmentation therapy. Not all insurance policies will cover augmentation therapy....For me they quoted me a cost of $7800/month for my augmentation therapy. It IS due to my choice to use Zamaira as opposed to Prolastin. Prolastin is the cheapest but, there are 3 providers of augmentation therapy out there: Talecris, CSL Behring & Baxter. My co-pay without medical assistance would be $5250 in the first 3 weeks of my medical insurance coverage year. It plays against my medical insurance not my prescription program.

Double Ooops!! Scenic Shore 150 pledge link

Here it is folks! The absolute correct link: http://www.active.com:80/donate/2007SS150/KatieSchwalbe

I have had some trouble with active.com cc payments. One went through but, they sent no receipt and another wouldn't go through. If I can get a payment to go through I will be able to make that $50 pledge I promised. Hopefully you folks will have a superior experience!!

Thursday, April 26, 2007

Another Carnation instant breakfast day!

I pedaled 15.65 miles. I pedaled up 5 mild inclines and 4 moderate inclines. I did cheat on two of them by pedaling hard and using momentum to my advantage. It was fun to try to go scary fast too which whether you are an active sick person or an active healthy person we have all done!Pedaling up the slight incline to my driveway is getting easier. I am making Gorrilla burgers. What are Gorilla burgers and why are they call that!! They give you bad breath because they have liquid soaked minced garlic in them. Garlic is an anti-oxidant.

Gorilla burgers:
2 heaping tablespoons(like what you eat cold cereal with)liquid soaked minced garlic
1 pound hamburger

mix together. let stand in bowl for 5 - 10 minutes. quantity: 4 burgers

I like to have them with the sara lee wheat kaiser buns. Top off with Koop's Arizona heat mustard & ketchup and if I want a Super Gorilla Burger I add a slice of white onion(another anti-oxidant.)!!

Wednesday, April 25, 2007

Beyond every black cloud there is a silver lining!

I set the alarm for 10am and woke around 8:30am. I got up by 9am filled with good intentions. I got up and had the closest thing I have had to breakfast in ages!! I poured myself a glass of milk and proceeded to follow it with a packet of carnation instant breakfast powder. I'm trying to turn over a new leaf!! My sisters will tell you it takes me at least two cups of coffee before I resemble somebody awake! Well, stage one is going pretty good. Denny W. has been telling me how the body is an engine and you gotta keep it fueled.

Stage two is to get dressed in bike gear and hit the road. I get my bike shorts & jersey on, step outside and realize it is still chilly out. So, I decide maybe I should put those cold weather bottom tights on. I still am not warm enough so, I put on the free CSL Behring jacket on and decide I'm too hot! Then I spy a fleece pullover and decide that might just be the trick.....this is almost as bad as deciding what to wear on a first date of someone you REALLY want to impress!!

NOW, to stage three!! I take bike outside and proceed to try to pedal to the end of the driveway. By the time I get to the end of the driveway I realize the chain is stuck and half off the front sprocket! I proceed to dig through my repair kit bag for my multi-tool. Ah-hah, I find it. I soon discover I do not have a hex wrench large enough to fix what ails my bike. I am really desperate to get riding time in on my bike so, I load it up and take it to Grinders skateboard & bike shop(read only bike shop in 2 county area) in Rice Lake to have them fix it. I get there and the owner proceeds to put a tag on it and make some sort of reference to my leaving it there. I tell him "Hey! Wait!! You don't understand I have my first bike trek on May 6th. I CAN'T leave it hear. I haven't gotten any bike time in over 2 days! I rode 18.9 miles 3 days ago(of course there is an obviously dedicated bicyclist standing there waiting to drop her bike off and she throws her head back and cackles!). He says "Ok, but it won't be done till 12pm." I tell him that's fine. I realize all my well laid plans have gone right out the door. I think about those dreadful medical assistance papers I have mostly completed......I really envy those of you who view mathmatics as fun......I decide that would be the best use of my time(complete & mail med assistance paperwork). I am one of those people when she is faced with 1/4 inch of mathmatical paperwork for one task her eyes roll to the back of her head with her first glance!!

I blow the healthy eating regime and eat a patty melt and wedge fries w/ ranch dressing at Dana's Beer Cheese Bar & Grill while waiting but, I did get the paperwork signed, dated & mailed. Hoorah!! I do not need to worry about it for another year!!

I stop by the bike shop at 12:30pm. They not only have my chain adjusted...they also have my cadence working so I can use my $3??.00 Kurt Kinetic fluid trainer in combination with my Spinervals DVD's. I now have no excuse rain or shine why I can't train! It cost me(drum roll please......$7.39...I expected it to cost me a lot more!!!). I also found that they could get me that Rosie The Riveter bicycle jersey for $25 less than I could online.

Have a Great Day Folks!

Tuesday, April 24, 2007

Saturday's bike ride....

I felt the results were satisfactory. I biked 18.9miles of up and down road. Rode against the wind in some places but, was able to keep pedaling. I used a breathing technique I had learned from my sister Johanna which enabled me to ride against the wind without my lungs tightening up too bad. I inhaled through the nose and exhaled through my mouth( I let my upper lip overlap the lower lip to prevent the air from being forced back in. I pedalled over to Bruce, WI at an average speed of 10mph and pedaled back at an average speed of 7.5mph. The temperature dropped on the way back and it was a cold damp that started to set in. I hopped off my bike on three seperate inclines as I wasn't sure if I could hang in there to recovery. As I told a friend " I figure it would be less painful passing out holding up the bike than pedaling the bike." It's actually a lot easier to walk the bike than pedal at the top of those inclines. I average about 2mph walking but, I'm sure in time my stamina will increase and I won't have to do that!

I was sore all over. The fact I was saddle sore surprised me! I had intended to take a bath when I got home but, was concerned I'd fall asleep in the tub so, I went to bed instead. I don't remember my head hitting the pillow. I also decided after my bath Sunday morning I was going to allow my body a day or two to recover before I biked again.

For the first time this year I was able to pedal up to my driveway and not hop off. As I said I was sore all over but, I think that just indicates I went beyond my comfort level. I'm going to have to do a lot more of that before the 100k Dairyand Dare though!!

Tomorrow I have a 12mile bike training planned.

Friday, April 20, 2007

OOPS!! Scenic Shore 150

I just went to active.com and discovered I needed to set-up a fundrasing page! I did that so, now you should be able to donate if you believe in the cause.

I plan to donate $50. I set my my personal goal at $500. I think it's a bit lofty since I've never done pledging before. I need a minimum of $250 by July 9,2007. Thanks!!

Advocate???

I read Noreen's post and thought about what she posted....I thought to myself what is an advocate? So, that new Webster's dictionary got dug out and this is what it said under advocate: one who argues or pleads for a cause or proposal. The definition for advocating: recommend.

I think I fall under the later and Noreen under the former. Although, I think I might fall under the former in that I really want recently diagnosed alpha's to take that diagnosis seriously...very much opposite of me! I recently tallked to an Accredo Therepeutics rep and retold her of my first reaction to my diagnosis: "Oh, It's just like diabetes. You just manage it." What a blase' response!! Her reaction was: "NOW, Wait just a MINUTE!". I will always wonder if I would have taken it seriously back in 1995 or 1996 when my sister Johanna told us we(all her siblings) should all be tested if I could have added 10 or more years to my life......I had just started back up smoking after having been quit for 4.5 years!

Noreen worked to get us all organized to champion the cause of creating awareness and giving those of us alphas a means to educate ourselves/tools to extend our lives by creating the Alpha-pack 501(3) c. Because of her tireless work this year and at least the previous year here in Wisconsin Govenor Jim Doyle made a proclamation........May is Alpha1 awareness month!!!

I would like to ask everyone who reads this post to consider wearing a peach colored ribbon during May. By wearing a peach ribbon you will help raise awareness about the silent killer Alpha1. I will follow within the next few days with facts to sink your teeth in!

I'm up way past my bedtime BUT, this post was definitely worth my time!!

Thursday, April 19, 2007

WOW! What a difference!!

I woke up early fearing I couldn't get into an urgent care doctor very quickly. I got in within 10 minutes. My BP was I want to say 120/65 but, my pulse rate was 78 (a normal tell tale) with oxygenation at 95 %. He's seen me before and he listened to my lungs. When he got done he said he didn't hear any crackling or popping so that meant I didn't have pneumonia and didn't need an x-ray. He asked me if I wanted a nebulizer treatment. I told him"No, I usually don't notice much of a difference. NOW, if I can't talk...I atke anything I can get to help me breathe!! He did say my lungs were tight. He prescribed a 3 day burst of Prednisone and a Zithromax (Z-Pac). Then I explained about attending the respiratory retreat coming up, the Minnesota Alpha1 education day the week following the retreat and the National Alpha1 convention in June. I also told him of the interest in organizing an alpha support group. He said "If you bring information in I will email it to all the family practice doctors and the two pulmonologist in the area. I can also put it at the 3 nurses stations." It doesn't get any better than that.

But, the day just got even better!! I called Northern Breezes sailing school over in Minnesota to see if we could work something out to enable me to complete basic keelboat training early in the summer inspite of my suddenly crazy schedule. I couldn't seem to find two weekends in a row free. I got to talk to the owner....a VERY nice gentleman! We talked about the alpha1 and bicycling. He changed the schedule around so I can do 3 - four hour class instead of 4 - three hour classes. By the end of this next week I will be able begin studying for the class I expect.

My RoadID is enroute....I haven't had a medic alert bracelet for over 13 years. I always used to catch the chain on something and break them off.

Then when I got to work my lungs started opening up and I coughed up some gooey stuff. All of a sudden I felt more alert and energetic! I hadn't realized how my lingering chest congestion had been wearing me out so. I was so sick of going to doctors but, I think the Qaudrupedal bike trek coming up had me worried enough combined with the tightness of chest. I had come down with a severe respiratory infection while attending Strictly Sail compliments of the buddy that went with me. It's amazing how thoughtless some people can be of others!! I had clearly told him he could not have so much as a hint of any kind of respiratory infection when we went to Strictly Sail. We had gotten down to Chicago and I asked him to hand me my peak flow so I could test my spirometry level. I did my normal 350(This hasn't dropped in a couple of years and doesn't unless I get sick). Then I told him to try it. He proceeded to blow and have one those rattling coughs mid stream. Later the next week I told him how sick I was and all he could say "Well, I almost got pneumonia a while back"....my reply was "Well..I could die of pneumonia because of my weak immune system." We saw a rainbow while in Chicago but never got a pic of it. I didn't know that could happen during blowing snow. What was even cooler as we got deeper into Chicago the sun appeared in the middle of the rainbow! I had gone to a doctor 3 times in 4 weeks and still hadn't licked it. When through the lighter dose zithromax then the 500mg zithromax and augmentin. I think I had a batch of prednisone in there somewhere, too!

I also asked Johanna if she would read my posts. She's struggled with alpha1 for 12 years since originally being diagnosed and has attended several national alpha1 conventions as well as heard many speakers attending the alphapack support group meetings I am also hoping Noreen James with post comments as well. My thinking is that sometimes I don't remember things completely/accurately and other times there is just a different opinion/experience that others encounter. I'd rather have you presented all material so, you can come to your own conclusion.

Tuesday, April 17, 2007

Don't ever take up bicycling...I'm only kidding!!

Spring has sprung and so has the pollen count along with it. That has been part of the cause of my wheezing two out of the last three days. I learned that as a result of calling Johanna (who is also a ZZ). I didn't go to see a doctor on Monday because I felt sooo good when I woke up in the morning. I coughed up some green mucus today so, tomorrow I definitely will be visiting a doctor.

Bicycling with all the right gear is expensive. I spent half as much as I did for my bike (which included a Cateye astrale, Krypotonite lock, Bell helmet and a tire repair kit) a month or so ago!

The said bike gear included cold weather tights. I had wanted Sugoi but, Scheele's was out of them so I had to buy Under Armour which is good. I've bought Under Armour clothing before and was satisfied with it. So, I got a long sleeve top & bottom tight set. I had planned on getting a plain jane bike jersey BUT, I just couldn't resist the Curious George bike jersey.I really want a Rosie the Riveter bike jersey, though! By summers end I will have one I predict!! Also, bought a pair of bike shorts. Bought a shoulder bag(it's a bag that one attaches to the cross bar and bar the seat post fits in) even though I was looking for something a little different. The other small stow bags were too heavy. I needed someplace to put my inhalers, ID and health insurance card! I got a couple water bottles(one was insulated) and a water bottle holder. I picked up several kinds of food/energy sources to try to find out which I would like to use during a bike trek...gels, gel bloks and protein bars. I walked by the North Face, Titanium and Columbia jackets...and almost made it out of the store! Then I thought about how worried my sisters Mary & Johanna would be with the thought of me not having any protection from getting soaked by the rain during a bike ride. I wound up with a Columbia waterproof(seams are sealed) light weight jacket. When the cashier gets done ringing me up I findout since I spent so much money I'm entitled to a cap or t-shirt. Heck! Why not! So, I got a t-shirt, too.

My RoadID will soon be enroute to me and in the next few days I will find out if I pass muster with RoadID to be an affiliate. I'm officially registered in the Scenic Shore 150 Leukemia/Lymphoma ride. If you'd like to pledge money for my ride(I need a minnimum of $250) you can go do that at www.active.com.

Hopefully this next weekend I will figureout how to download pictures from my digital camara(a birthday gift to myself), how to use my new Palm(I'm hoping it will help me to remember appointments and to keep track of other things and then maybe even try to hook up to the internet through my cell phone(It's cheaper and said to be faster than local land line dial-up).

Sunday, April 15, 2007

Almost went to the Chicago bike show!

Yes, I almost did. I had called friends that live down there in Chicago to findout what other stores than Nordstrom's have good shoe selections for hard to fit feet like mine. They told me the roads are tore up again. I called some friends in Southern Wisconsin to see if they wanted to go with me. They all had things going on. I don't like to try to drive and figureout where to go in an area that I am very unfamiliar with. I wasn't feeling well so, I decided I was either going to go to the Minneapolis/St. Paul or Eau Claire,WI for more bike gear.

I don't feel good still today. In fact, if a pharmacy would have been open earlier in the evening I would have gone to ER or Urgent care. Instead I will tell you tomorrow about my bike gear buying trip. I'm going to bed as soon as I finish this post and get up early and head over to Rice Lake to Urgent Care or ER. I simply don't have good luck with family practice and pulmonlogist up here. I go to Urgent Care or ER and they know about alpha1. They also know respiratory infections need to be treated agressively.

Tuesday, April 3, 2007

F.A.Q. Oxygen & Road ID

Oxygen effects my memory or the lack of it affects all alphas. I still have a high oxygenation level but, my ability to remeber is not what it used to be. I've read and heard how our lower oxygen level effects our ability to remember things. There was recently an article in Newsweek magazine about how exercise has an effect on not only our mental attitude but, also our ability to remember things. Did I pick a copy up....you betcha!! So, you fellow alphas get out there and EXERCISE!!

Road ID I'm sure most of you out there have never heard of it. Just think of it as a sporty medic alert bracelet. I encourage everyone of you, if you are active or exercise in anyway, to get one!! I plan to order one in the next day or so. I myself don't want to have any loud type of medic alert bracelet. I want one that blends in with my attire but, is still Very Much noticeable when sought by another when I am unconcious or near unconcious. When I don't have such an overfull plate so to speak, I plan to put a link to Road ID on my blog. I've got to gets some codes inplace in order to get things better linked up to the www.

I told my high school class secretary I would have those in place by April 15th, 2007..... Now, I have to stand and deliver!!

If Wishes Were Fishes...We'd All Have A Fry

That's a saying my Mom used to tell me a lot when I was a kid. I can sure relate to it today!

I got up and realised that signing up for the 55 mile Qaudrupedal May 6th was insanity. I am definitely going to see what I can do to get into the 37 mile Quadrupedal!

Also, while going to work they were advertising about the line-up this year for Rock Fest. It's not an event I would normally attend but, the line-up sounded soooo good!!! Grand Funk Railroad, Uncle Kracker, Chicago, Three Doors Down and Collective Soul. I dearly love live music! To me...there's nothing quite like it but, I am limited as to what live music I can go see due to the fact I have been having asthmatic reactions occasionally to cigarette smoke in the last six months. Then I thought about the date and wondered....is that the same weekend as the Scenic Shore 150???

I got home tonight and the near first thing I did was dial up the internet to check dates. What a bummer! They fall on the same weekend. I definitely wish I could attend Rock Fest for a change but, Scenic Shore 150 over rules!!

The down side of alpha1 is you realise how precious everything is. I choose the Scenic Shore 150 because I don't know for sure whether next year I won't be able to physically do the ride. You learn to no longer put off till tomorrow what you can do today. If the cost/fees are difficult to come up with you either re-allocate or do without in order to achieve what you would put off till tomorrow. Besides, honoring Noreen can only be appropriately honored this year!

Just so you know...I will be putting $50 towards the $250 minnimum pledge needed to participate in the Scenic Shore 150(leukemia/lymphoma ride). If you would like to help me achieve the minnimum...,you can go to active.com to donate a pledge...just give me a few days to enter the Scenic Shore 150! I'm waiting for my internet cc(I have a low spending limit) payment to go through in the next day or two. I maxed it out with Dairyland Dare, Dairyland Dare bike jersey, Qaudrupedal and soon a Road ID. I have a seperate credit card for everything else. I then can sign up for the Scenic Shore 150.

Sunday, April 1, 2007

I came, I saw and I conquered!!

I drove my truck up to Minocqua in scattered pouring rain. I was almost positive I would not participate in the Only Fools Run At Midnoght 5k. I been shopping earlier in the day and everytime I'd get out of my vehicle or come out of a building my lungs would tighten up.

I had never been to Minocqua before so, I had to stop somewhere to get directions to the American Legion. I missed the parking lot(Boy, do they have a lot of one way streets for a northern Wisconsin town!!) and had to drive around a bit to get back to it. I sat there in the parking lot trying to decide should I just go get my goodie bag and scratch or since I'm up here should I go ahead and participate. I had all the gear need to participate along. It had stopped raining. I sat there a good 20 minutes trying to decide. When I stopped to get directions my lungs didn't tighten up like they had all day.....that was the weight that tipped the scale! I started something and darn it all I was going to finish it!! I was not going to quit.

Certain aspects of the event I felt could have been handled different. Twenty minutes before the race started at 12AM a guy came out and started talking to/directing us. Then he got us near the starting line. Then he started trying to talk to us via a bull horn to tell us about the race....every so often I would hear something he would say but, the indians were restless. I started out at the front of the walkers but, as the walk went on I fell more behind. I am pretty sure I didn't finish last but, I was disappointed in myself because I have done 4.5 mph at a level for incline on the treadmill at ost. In my defense though I can say I ran into crosswinds blowing wood smoke which caused my lungs to tighten up, walked up 4 mild inclines in 40 degree weather, got passed by a guy(on 2 seperate occasions) wearing aftershave or cologne that caused my lungs to tighten up and I ran into to strong headwind (tailwinds don't bother my lungs) six times which made it hard to breathe. My solution each time was to either slow down temporarily or permanently. I did 5k in 56minutes. I thought 5k was 2.5 miles until I looked it up on the internet tonight. 5K is 3.1 miles.

I drove home afterwards and about the time I hit Hawkins I was glad to know where I was cause I was very tired. I usually have a tough time getting to sleep. When I got home I don't think my head was resting on my pillow 5 minutes and I was OUT!!