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, August 29, 2007

The long awaited day has arrived!

Our soldier boy Morgan arrived in the states yesterday. I am off restrictions for the most part as of today. WOO HOO!! In otherwords, I can ride my bicycle but, not on long rides. I think that means I can't do 20+ milers. I am still battling it out with health insurance associated with my augmentation therapy as well as short term disability insurance through my credit union insurance provider. Is doesn't help that Mayo's insurance department is slow as a snail and I DO MEAN SLOW AS A SNAIL!!

Due to the fact I'm starting to stress over the insurance & bills I've decided to get busy with numerous projects till I return to work after 9/10/07. Worrying about insurance is fruitless. I know there is nothing in my control that can be done at this time to expediate the insurance issues. A distracted mind and busy hands is my cure for worry. I likely won't post much in the next few months unless I lose my job(which lets hope doesn't happen).

Yesterday, I went in to urgent care. I gave a sputum specimen and they said they will grow the cultures as long as they will grow to determine what bacteria I have in my lungs. I think most of my lung issues right now are due to the humidity as a result of all the recent rains. I was able to deliver information about the Alpha-Pack and alpha1 to the doctor who said he would copy and email it to all the Marshfield clinic pulmonologist and family practice doctors.

I also got signed up for the Chicago Healthy Lung Hike at Montrose September 23, 2007. If anyone would like to donate to the cause....I am part of TeamAlpha-Alpha1 foundation . From all the money raised by TeamAlpha seventy-five percent will go to the Alpha1 Foundation for research, detectiton and awareness programs! If anyone would like to walk for team all means do so, too!

Tuesday, August 21, 2007

Greetings from the rainforests of Wisconsin!

I haven't posted much as their hasn't been much to tell. I'm still on a 10lb weight lifting restriction. I forgot to ask if it would be ok for me to ride my bike. Hopefully, after tomorrow it will be okay(if I can remeber to ask...I forgot last time). I've been busy picking blackberries and believe it or not last week it made my right arm pretty sore but, this week I have notice quite an improvement in tolerance and movement in my right arm! I read parts of Deep Survival. I also skipped around reading that book about that Park Ranger who disappeared by Yosemite back in 1996. DO NOT read the back of that book about Randy while alone at your cabin(which is over a mile into the woods & out of phone range) late at night alone! There were parts of it that gavc me the creeps!

I told the insurance lady at Accredo that I wasn't ordering anymore augmentation therapy product till they got everything straightened out with my health insurance company. I've begun being billed for my cancer & breast reconstruction surgery before my augmentation therapy(which started 3 months ago). Caring Voices Coalition was to help me with my copay associated with my augmentation therapy(which was to the tune of over $4000 assistance). It's not that I don't want/dislike my choice of augmentation therapy. CVC is only going to help me out with bills associated with the augmentation therapy and Accredo needs to develope a smarter mouse trap for health insurance providers. I was told from the get go I was approved by my health insurance company. The insurance lady at Accredo told me(and I believe her) that she asked them repeatedly if they need to pre-certify me. They told several times no. No alpha should have to go through this kind of additional stress! I am officially in remission but, I have to save worrying about treating/paying for treatment/surgery for two diseases SUCKS!! What gripes me more than two nurses working for my health insurance company determine whether a proceedure or prescription is neccessary . Most nurses no little or nothing about alpha1 and one really needs to see some yearly/bi yearly PFT results before you will really know whether augmentation therapy is neccessary! No offense intended towards my new nurse but, she didn't know what it was(she was honest with me and said "I'd never heard of it before and I asked my colleagues about it. One of them said they'd heard of it before).

I really want to encourage alphas out there to try to educate people about ialpha1(make others aware). Ways that you might try is through local schools AODA officer, PTA's, school newsletters/newspapers, newspapers and various other media. If you are healthy enough or have some close relative willing who participates in fitness walks or bike treks try to contact the Alpha1 Foundation and see if they could put you in contact the Team Alpha1 coordinator and see about getting a team Alpha1 bike jersey or t-shirt to help raise awareness/funds for research.

Thursday, August 9, 2007

A Better Day Has Arrived

Yesterday Lucy and I went solo. Between the two of us we managed to blow through my veins 3 times before we called it quits. She said that my body would absorb the fluid and I would be able to stick myself in the same areas by today. Since her daughter was flying in from Italy today she had to get a coworker to come out today. .....It truly amazes me how many people I know that have children that have married someone in another country and chosen to live there. I went to college with a girl born in Italy(and now an American citizen) and I have to say I think I could handle living in Italy but, I'd sure have a time mastering the language I would think.

I got it the first stick but, I shook like a leaf during half my infusion. I was petrified I'd blow the vein. The fact that I was able to stick myself without blowing a vein today is such a huge relief!! The substitute was a very hands off nurse which helped I think and as she said the goal is for you to able to self-infuse.

Wednesday, August 8, 2007

Tidying up the blog is going to happen

I spoke to a prominent individual in the Alpha1 community for a short time this morning. I realized I need to be more aware of privacy issues. I simply don't get into it when it pertains to me because too often things I've said or done have been misconstrued which I have then had to spend time straightening out. I live in a small town rife with gossips. Of all the things ones reputation is the most important.

Other realizations have occured as well. I've been really bored and I tend to be posting a lot of nothin' so, I've decided when I get back from my visit to Mayo instead of going to the cabin for a couple days I'm going to sequester myself there for about 5 days. I would make it 6 but, I have to be back for an infusion.

Some previous posts on my blog will be either deleted or edit(if I can figure that out).

Tuesday, August 7, 2007

FAQ: Pulmonary Rehabilitation

If you have an FEV1 below 50% it's frequently recommended you participate a Pulmonary Rehabilitation program. The thing you need to know though is....not all pulmonary rehabilitation facilities are created equal.

Why should you go through Pulmonary Rehabilitation?

-it may help you remain working

-it may help you remain independent

-it may increase your quality of life

-it may help you stay of oxygen

What should I know about Pulmonary Rehabilitation?

-California has the most progressive pulmonary rehabilitation schooling

-you need to look for a pulmonary rehabilitation facilitiy where the staff continually update
their pulmonary rehab knowledge

-just because a medical clinic is progressive in one area of services they provide does not mean
they are progressive in all areas of service

*An excellent example of great pulmonary rehab facility and staff is Karen Block's Endeavour
Pulmonary rehab facility in Mequon, WI(sp?)*

Do your homework!! Your lungs depend on it!

It's heating up in the Northwoods!

Thankfully, not too bad!! We're only in the high 80's. By the weekend I know somebody who's going to load up her truck and head for the woods. It's usually about 10 degrees cooler down at the cabin vs. here at the farm. I have no AC in the house.

Last night I felt a round lump where the breast reconstruction area. It was pretty tender and I became concerned. I called to speak to Missy again at Mayo. They were in surgery today. I stopped by a nurses house in town in the mean time and she wasn't particularly familiar with breast expension implants but, she said she thought I shouldn't be too concerned. Missy called back and said it was likely the magnet in the middle had shift(but, of course she could say for sure without seeing me). She reiterated several times don't get uptight about it or you will make matters worse. She also said this wasn't a pain free procedure(breast implant expansion). I can hear the groans out there!! You're thinking..."You're going to tell Kate to relax...what a joke!" I'm trying to not get uptight I promise!

I am very much looking forward to Friday. Thinking good thoughts. Utmost is that the drain is going to come out!!

Monday, August 6, 2007

This just isn't my day....Sorta

I didn't get my drain tube out today but, it's a good thing! Missy(the Mayo nurse who works with Dr. Walch{plastic surgeon}) said that if they remove the tube too soon fluid may build up that my body won't asborb. It's then followed by an infection and I'll lose the implant. ....I can wait. I asked Missy many questions. One of those was which doctor has my short-term disability papers. I am rescheduled to go to Mayo on Friday and Have a 2pm appointment. They do not use FAX at Mayo. It has come to my attention that some companies(especially lawyers & medical organizations) prefer the real McCoy signature of an individual. I got a call late in the day from someone from Dr. Degnim's office(breast surgeon). She apoligized for them not processing the STD paperwork sooner but, Dr. Degnim was gone last week. I had been hearing 4 weeks off for so long and I told them there was no such thing as a light duty job where I work other than one that exposed my lungs to fumes from primer. I would need to be off 6 weeks. I foundout today the minimum time one can be off w/ a mastectomy is 6 weeks. Due to the setback with my drain tube my return to work date has changed! So, instead of going back to work the last week of August I will return to work September 10th,2007. She also promised to expediate it ASAP. Hopefully, by next week Friday I will see a short term disability check.

In other news I spoke to Virg at Barney's where I have rented a meat locker. She said not to worry too much about paying up due to STD checks not coming yet....just empty your meat locker so Don can proceed w/ remodeling! I also spoke to Cory Muller of CSL Behring and he is going to get that Yoga Mind & Body book to me soon! He also believes there is a very good chance I will be sponsored again next year to attend the Alpha1 National conference.

Sunday, August 5, 2007

I thought of a few more things! Hey, Mister Morgan!

...Mister Morgan is our family soldier boy in harms way over in Iraq. He doesn't do email right now by choice. He does chatting. Internet chat and phone calls to his Mom. The info I want to share with him will be my closing topic!

When my sister Mary was going along with me to one of my all day appointment/tests days...we were walking through Mayo's subway from the Damon parking lot. I had to tell her I couldn't walk as fast as she was. I think that was the first time I ever had to tell somebody that and she's 10+ yrs older than me. I'd always wondered how that would effect me some day. Oddly enough, it did not bother me but, I suspect it might have bothered her(I do concede that it was kinda humid in the subway though and subways are great for stale air).

In thinking about that...I also thought about the fact many of the girls/women my age could do circles around me walking or biking but, the fact is I realize I can still enjoy those activities inspite of that fact. Those activities help me physically continue to cheat the oxygen tank and they help me mentally, too! I also have realized I STILL WANT TO TRAVEL AND STILL FEEL LIKE I COULD ENJOY IT!!! I want to see Austria, I want to see Switzerland, I want to see Scotland, I want to see Greece and I want to see Ireland. I'm sure there are others I will think of but, WOW what a sweet realization!!

I also have it set in my mind next year I am going to buy a piece of land and build a healthy handicap friendly house on it. Now, I did want a particular parcel that is about a mile from where I currently live but, I think it would finacially be too much of a stretch. There is another parcel that is 30 acres just a couple miles from the cabin and it is over priced IMHO. I feel like the land prices up here are softening and it will still be on the market next year. If it isn't I'm sure there will be another parcel somwhere within my means.

Mister Morgan....I thought of our discussion after I spoke to you when your Mom & I were leaving Rochester last Friday. 1) It was awesome to get to talk to you!! 2) Numerous people have said " Nah, Katie! YA GOTTA go to Strictly Sail!! You love sailing!"

So, I've thought about it. About that time, my inheritance money from Grandma will be rolling over. I invested it in cd's. I would be using a small percentage of the interest from it to pay for me/us attending Strictly Sail. Strictly Sail isn't that expensive. I/we can stay at Jones on Friday night but, if you do you're going to have to be able to dress "dressy casual" because it is my understanding they would like to take me out to eat somewhere respected. I still would like to stay at Chicago Red Roof Inn Saturday night because it's like 1/2 mile from Navy Pier. I got really tuckered out last year after staying there at Navy Pier all day! It's a cinch driving around Chicago on weekends, too!

Saturday, August 4, 2007

I Just Really Haven't Known What to Write...

I sat down several different times and signed in but, there didn't seem like much news to tell. I didn't want this blog to be more about the cancer than alpha1. I actually feel a mixed bag of emotions when I can be classified as a cancer survivor yet, I was able to catch it at such an early stage. On the other hand you can't really respond to cancer treatment in the same way that someone that doesn't have alpha1. I didn't initially realize that myself until I started to read that Mayo womens cancer book given to me by Join The Journey. I was ready to go full steam ahead with radiation until I read one of the personal stories in the book!

I had also wanted to mention about the Minnesota bridge collapse but, had been too tired to respond. I didn't know about it till 9:10 PM that night when I turned on my radio. My sister, husband and two daughters live near there. I immediately tried to call to make sure they were all ok and got a "All circuits are busy" automated response. I finally got through to my sister Johanna and she had gotten ahold of Mary right away." She knew that 3 out of 5 of them were ok. Mary's older daughter wasn't a big concern was my understanding but, her son-in-law worked on the north end of the city. Johanna figured if something had happened to one of them we would have heard from my Dad used to say "No news, is good news!". I feel for those who have lost loved ones to the MN bridge collapse.

My old nurse and my new nurse had friends that normally use that bridge and they either didn't use it that day or they crossed before it collapsed. My new nurse Lucy, doesn't have quite the nerves of steel Sue does BUT, she is developing them. I'm the first patient Lucy has ever had that sticks theirselves and is working towards completely independent self- infusing. Lucy keeps saying she is SOOO, impressed!!

I thought about when the Oklahoma City bombing happened and it seemed like it took 3 days before I could get a hold of any of my friends down there to verify they/their loved ones were ok. I can't express enough how valued my friends from college were/are to me! The last semester at Eastern Oklahoma State I had to bum a ride to McAllester once a month to go grocery shopping. I would have starved to death if I had bought groceries from Roy's Cardinal Food in Wilburton!!! I had taken liability insurance off my truck so I could pay my 3rd semester bill in order to be able to enroll for 4th semester classes. I have to laugh! I doubt if anybody I went to high school with would believe I ran for president in college or was a student senate rep. Not to mention the various other club officer positions I held that I can't remember anymore! Being on soils judging team at Eastern was surprisingly enough...pretty neat!

I've been pretty freaked out about lymphydema until my old nurse Sue talked to me about it before she left this last time. Lucy will be on her own with me this next week. Hopefully in four weeks I'll be completely independent!!

I still haven't gotten my drain out from surgery. I just can't seem to get down to 30cc fluid in two days. It's really starting to irritate me physically(the drain around my expansion implant)!! I'm anxious to get permission from my plastic surgeon to ride my bicycle again! In the mean time I plan to get my Palm set-up, a guest book, main page site counter on my blog and that Road ID link setup.