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

Sunday, September 30, 2007

That Darned...RoadID!!

I got that wristband type RoadID...and I've taken it off to wash it,take a shower or something and not put it back on my wrist/on my person someway before I've left the house at least three times already!! I think I need to get a shoe type RoadID pretty quick!

Drum roll, pleeeeease! "Big Tony" is on board for the Crazylegs health walk with Michelle, Marilyn & myself this coming spring. GO, TONY!!

BTW, Marilyn....Tony says you're the bomb! He's very excited that you agreed to do it and he'll get to see you!!

Just call me froggy!!

Well, I returned to work Wednesday and clearly wasn't really physically ready. I was still running a low grade fever. My boss asked me if I was free to go back to work with no restrictions....I told him that's what the paper says. I went to SDL and one of the ladies over there said that I didn't look so good and said I could sit down doing one of the jobs over there. There were a lot of people out sick with respiratory bugs/flu. They were very glad to have a warm body into work!

WOO HOO!! I had a successful infusion Wednesday, too!!! On the first stick no less!

Becky came over to SDL(from my normal work area) Thursday and made the remark: "Katie, you look so much better than you did when you first came back to work. When you first came back to work you looked so woreout like you just couldn't get back into the swing of things. Haggard." So, I guess between all the stress, others with respiratory bugs and the 2 weeks of missed infusions...It all caught up with me.

Now back to the title! I sound froggy, raspy and am still coughing a good bit. The coughs are still wracking my body but, not like they were earlier in the week. I used two vacation days to make up for the lost time and worked voluntary 10hr shifts(9 hrs was mandatory) to offset vacation pay(which is 8 hrs a day no matter what shift you work) and hourly losses earlier in the week. We are on mandatory 10 hr days this coming week which I am eternally grateful for.

I also have thought to my self there is a lot of alpha1 knowledge I have that I haven't placed somewhere in my blog and wonder what people who read this would like to see....I just want to make it better and help empower other alphas in their fight for quality & quantity of life!


(Along the sidebar on the right )

Tuesday, September 25, 2007

Pennies from Heaven, etc.

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!!

Sunday, September 16, 2007

Quote Of The Day:

The only disability in life is a bad attitude.

author unknown

Wednesday, September 12, 2007

I need my head examined or is it...what I like best about my fitday?

Because having a public diet and exercise journal BITES!! People get to see the real me...warts and all! All joking aside, I'm really glad I have my very public fitday for two reasons. For one it motivates me more to walk the talk than talk the talk. Secondly, it lets those of you out there that are struggling with your alpha1 and what you know you should do realize you aren't alone in struggling to change your ways!

What I like best about it is that I used to count my every calorie burned while working out, mentally keep track of it and then I would check my weight before and after I worked out. I used to just absolutely drive myself nuts trying to lose weight so I could breathe better and so when I went on augmentation therapy it would be cheaper. I have this friend "Miss Confidence" who I have been friends with since what seems like dirt(8th grade track) who is just skinny as a rail and very serious about her diet. She works out at the same exact time pretty near every day! She fell off the wagon for a while. She's back on track w/ a workout partner. All n'all she's pretty dedicated. I actually think she is as skinny as she was in high school. I don't think many of us nearly 20 -25 years after high school graduation can say that! I hope someday I am as dedicated as her. I met up with a friend uptown tonight and he commented he thought I had lost weight in the face...I told him it was probably from the 2 mugs of coffee I had today. I don't think 2lbs is going to be that obvious!

I went to Wal-Mart tonight and bought myself a new thermos so, I could bring coffee to work to get that caffeine fix! I also bought creamers so I new the exact calories. I think the fitday version isn't very accurate. I still plan to take water bottles to work as well as coffee. I want to try to drink half my weight in ounces of water. I also bought wally world cereal bars for 3 reasons: higher in protein, lower in calories and lower in prices. I also bought the unthinkable....I bought grape jelly for P & J sandwiches for my evening meal. I swear the economy jars in college were larger!!.

I've decided I'd try to do things the way my great grandparents on my Dads side used to do it. Years ago the older people that knew them up here used to tell me they had there big meal at noon and their small meal in the evening. It's only an experiment but, I think it will be interesting to see how it plays out as my great grandparents never looked overweight in most of the old pictures I've seen of them.

Yeah!! I have the right kind of release slip so, I can go back to work tomorrow!

Tuesday, September 11, 2007

Greetings From The Windswept Hills of Northern Wisconsin!!

Here I thought I was going back to work today.......except for one small thing. I didn't have a release form that said I had no restrictions. I went to the office and asked HR if they had one. Then the HR lady called my plastic surgeons office at Mayo only to discover she was in surgery....hopefully I will be able to return to work tomorrow. I stopped by the feedmill to buy apples that are seconds to make applesauce and apple butter but, they were eating/apple cider apples. Different kinds will come in later in the year thankfully!

The upside to not having to work tonight is I hopefully can get caught up on rest! I stayed up way too late last night downloading printer software to my puter' so I could use it with my laptop. I needed to print a PDF of a HIPAA release form to sign and FAX to the Alpha1 Foundation. Plus, I also wanted to printout a job app for the local ski hill to pick up some extra cash to help me pay down debts accrued form being off work for two months. Short-term disability is not quite two thirds of my normal income. I'm trying to keep up on my fitday at least but, I've been slacking.

I got registered for the Join the Journey walk this coming Sunday. I hope this is the first of many affirmation walks to come. It's funny I told my close friends and family before they even performed surgery.....when I'm cancer free I intend to do a affirmation walk for a different cancer organization each year. I wasn't even sure what I meant by that when I said it....until I was asked to define it! My definition was: to give affirmation to those who have lost loved ones to cancer or have loved ones fighting cancer that there is hope and what they are doing does matter. I should have also included those that are fighting cancer as well!! When I did the RCU walk there was a lady walking in the same event I was that had obviously gone through chemo and I thought to myself .....Good For Her!

Thursday, September 6, 2007

A Bad Day...With a Sweet Twist

I have been struggling with with insurance companies. This morning started out with me stopping by the local clinic to get some medical papers I had requested yesterday. They didn't have them ready. Grr!! I get about an hour and a half down the road. My cell phone rings and the lady is asking if I'm going to pick up my lab records today. I tell her I'm enroute to Rochester. I'll have to pick them up tomorrow. I get to the Hardee's in Baldwin at noon. I try to order a grilled chicken. The drive-up lady could barely speak english and could understand it even less. To make a long story short I didn't eat grilled chicken. I called Dr. Krowka's medical secretary and used a colorful metaphor(in reference to the insurance processing dept's consistancy in botching getting proper medical info to my insurance providers in a timely manner). She said "If you -----, I'll have to hang up on you." I then rattled off to her everything I needed. First she said I spoke to fast. Then she told me Dr. Krowka would have to see it. He was booked sold all day and she couldn't guarantee she could catch him.

I filled up with gas in Red Wing and decided I better get some form of sustenance before I arrived at Mayo. I get there late & have problems finding a parking space. I get into the subway and realize I forgot the letter with all the info listed my health insurance wanted. I need to get to my appointment. I try 8th floor. Then I try 10th floor. Then I give up and ask someone which floor I need to be on. You would think I would remember by now! I've been there enough times.

They direct me to 12th floor. Twelfth floor is COOL! It has computers w/ internet so one can go online while you are waiting. I check my blog and notice a comment. My name gets called so, away I go but, not before I have read enough of Breathinsteven's comment to be uplifted!!

One of the questions I asked Missy(the nurse) today was...since I have had cancer....Can I donate my organs???I had the donor sticker on the back of my drivers license since I was eighteen. I had spoken to somebody at OST/Bodyshop who had skin cancer removed and was told she could no longer be a donor. Missy said "I don't want to tell you the wrong thing. You need to call the organ donor number and ask them. I do know you cannot donate blood." She tells me I will have probably 2 more breast expansion sessions and then we will wait four months for my reconstructed breast to settle. I also asked her if it was ok to have a racing sailboat tattoo put on my reconstructed breast. She said"You just need to be careful because of the implant"....I figured since I was going to have the areole tattoo on what's one more tattoo. She went onto say that some women completely forgo areole's. In fact one women loved flowers and had a big flowery tattoo put on in place of a tattooed areole.

I then went back to my vehicle to get my paper. Then I went to the breast center to get on a computer to get a FAX # in my email. Then I proceeded to set my keys down by one of the computers in the breast center and head back up to Pulmonology. I get there and they are not too happy to see me but, they oblige me. Dr.Krowka's secretary speaks to Dr. Krowka about talking to me. I sit down with Dr.Krowka and show him the paper. He realizes indeed I do not have all the medical info needed and I wait for the necessary medical records and other info.

I then went down to the business office to request papers for medical expense assistance and to see where they were with my credit union short term disability(yes, I'm still making payments on loan/credit card bills). After that I went to an Indian restaurant.

Life is good and organ donation is SO IMPORTANT !! Those organs aren't going to do you any good when your dead but, they could do someone else good! You know the people who need organs .....could be your spouse, your sibling, your best friend, your parent or your child. They aren't always somebody else's!! Don't forget cornea donations either(because someone did that my late Mother was able to see as the result of receiving one after a bad cataract surgery).

Wednesday, September 5, 2007

My attitude is definitely evolving...

The other day I started to think about how Roxanne had said " It's not if you go into remission's WHEN you go into remission!!" when I had my cancer scare this summer. For the last year and a half I've remarked and believed "I'll never win the lung transplant lottery. It's like finding a needle in a haystack!" I realized receiving a lung transplant is no different than going into remission from cancer. Attitude is everything!

My friends have heard me saying more than once "Attitude is everything in anything!"
Why I couldn't apply it to a lung transplant is beyond me. I had no problem believing LVRS was within my reach.

Anyone of us who gets put on a lung transplant list can have the right match. I've met enough lung transplant survivors to realize that. You can look at the transplant waiting lists but, it doesn't tell the whole story. And guess what....the people I've met they've been regular people. They've not been independently wealthy. What they have had is a strong emotional support network. There was a local eye doctor they had a fund raiser for so that he would have enough money for a heart transplant(believe me the county population is 15,000 and it's the poorest county in the state of WI). Given this realization I have chosen to believe It's not if I receive a lung transplant. It's....WHEN I RECEIVE A LUNG TRANSPLANT!!

A good atttitude will serve us well, in two respects:

- it will make our life more enjoyable

- if we chose not to have a negative atttitude we won't get depressed and lower our immune
system which will make us less prone to illness/lung function decline

Saturday, September 1, 2007

So grateful...yet, an ungrateful brat!

That would be me! Thank you to those of you that participated in the cancer talk poll.

I am so grateful to have the cancer gone yet, it bugs the heck out of me that as a result I have become so deconditioned!! The fact that I was so well conditioned helped me recover sooner but, because of surgery I could not do hip dips, ab crunches, bike or lift any amounts of weights.

I really am a brat about this. I stopped by an older friends house the other day and we sat down at her kitchen island and she said " I love the fact that you say" WHEN I had cancer!" It wasn't "Geez Katie, you've gotten so out of shape!" It was more "I am so glad you are alive!!" How many people with cancer can have as quick and easy a trip to remission? I suspect not many. As an Alpha though I worry because I've become deconditioned that I will approach disability quicker because of it. Am I being reasonable...likely not! As an alpha though one just naturally does worry about such things.

There is one thing I am grateful for second most to the opportunity to be cancer free. The fact, I was interviewed by the Alpha1 Foundation for a feature peice for their website!

I had recently sent an email to someone I graduated high school with. I told her about the interveiw and what the article in Alpha1toOne about Mary Peirce & Shirley Dennis did for me.

I had been diagnosed with Alpha1 for almost 3 years before I foundout that I would have to go on augmentation therapy(which is a FDA approved, rest of your life procedure) because my lungs were in such a severe state of decline. For those first three years I halfway took alpha1 seriously because I really wasn't noticing much difference in what I was and was not able to do. I had begun to see how badly it was affecting my older sister Johanna's quality of life. When I got that report from my pulmonologist I had this perception that all the joy, pleasure and even intimacy was soon to be a thing of the past. I felt like I had unknowingly stepped out in front of a freight train w/ the throttle stuck wide open and about 4 or 5 months later I realized that. I wondered "Did I peel my body off the front of that freight train or did some compassionate strangers?" Somewhere towards the end of the absorption of the effects Alpha1 disease would have on my life that article came.

Mary talked about how Shirley had biked in a long rainy trek with a oxygen tank strapped to her back. She also mentioned that you need to do your part too, in order to fight the disease. That was such an inspiration to inspire another there is not much greater gift another human being can give to another! Hope is the most inexpensive as well as most powerful weapons anyone of us has no matter what we are fighting or going through.

I hope I can pass on the gift of hope that Mary, Henry, Trina, Len and a host of others has given us!! I look forward to being interveiwed by other people/organizations in the future.