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

Tuesday, May 29, 2007

F.A.Q. Influenza & Pneumonia shots, LVRS and Lung transplant surgery

I am posting this because the first Pulmonologist I saw after I was diagnosed with Alpha1 (by a family practice doctor) didn't bother to tell me if I didn't get a flu shot every year and I believe it is every 7 years for a pneumonia shot....I could be declined a lung transplant. Also, the lung transplant age cut -off is 65 years old.

It is not the end though!

There is also a procedure called lung volume reduction surgery(LVRS). From what I know you don't want it to involve laser surgery. There is a Dr. Hassler associated with Froedert Hospital that uses Dr. Cooper's staple and glue method which has been succesful. I have seen it first hand via my sister Johanna & Noreen James. Not everybody is a candidate. Most Alphas lungs die from the bottom up but, some die all over. There was a pretty rigourous series of tests that had to be completed by my sister before the doctor fact, he had told her no at one point. Then he asked why he should do it. LVRS is not something to be taken lightly!!!

Saturday, May 26, 2007

You have homework....

Was one of three things my nurse Sue said yesterday. The other two things were: This isn't going to happen overnight and we will get through this. This was said after I told her I didn't want to play musical nurses and that I had it in my mind that I needed to get self-infusing down in three visits. She does have a 2.5 hr drive from Minnesota so again, I can't blame her for not wanting to spend 5 hrs driving.

They sent a educational folder with first augmentation shipment. Fortunately, as she was paging through it she said at one point: This part you don't have to read because you have a pretty good understanding of this and what it is doing to your lungs(It's not the first time I have heard it sadly enough). I'm kind of an information junky. I think knowledge=power.

I began trying to set up for my infusion by myself. We used a periferial(sp?) something or other but, I think next time she is going to try to teach me how to use a butterfly. I stumbled through the setting out of all supplies needed. I did the mix and plugging in to iv's and switching IV's. I suck at not being careful about sanitary habits! I.E.: pulling out the sticker(don't have the technical name memorized yet!) slowly out of the vial, yet not touching it so I could get all the Zamaira out of the vial into the IV bag. I have to remember to not touch anything that could be contaminated with germs throughout process. If I do, I need to remember to sanitize my hands. I'm learning though! I stopped at the store and bought sanitizing wipes for the house and anti-bacterial lotion for the cabin. I had bought a bottle of sanitizing lotion for the house a month or two ago.

Cory Muller the CSL Behring Sales manager called and asked earlier in the week if I had noticed any difference since my first infusion. I couldn't notice any differences. Pam from Accredo Therapeutics also asked the same thing. Then when Sue showed up on Thursday she asked the same thing. She said we were going to deliver the augmentation therapy at full speed this time. She warned me I might get itchy or run a fever and a couple other things I didn't remember. I got itchy last night and I think I might have been running a slight fever but, for whatever reason today I felt alert and like a million bucks at work tonight! I don't want to get my hopes up too much....but I certainly am hopeful because the last month or two most of the time I have felt like something drug home from the back forty.

I also keep forgetting to comment on the fact that every event I learn either what not to do or why something is done. As Barry Bearchi that sold me my first truck when he worked at Burtness said: You love to hear the good stuff BUT, you learn the most from the bad stuff!

Have a safe Memorial weekend and don't forget to honor our veterans!

Thursday, May 24, 2007

I just wanted to share this with you....

I was thinking today at work how sometimes I'm really tired, sometimes I feel like I've got myself really together and other days I feel like an emotional basket case. I have read many posts on various message boards by recently diagnosed Alpha's. Many times in caps the title reads: I'VE BEEN GIVEN A DEATH SENTENCE!

Well, I am here to tell are not alone!

You have not been given a death sentence!

You have been given a life sentence and you may very well have a large quantity of quality of life left in your life. USE IT WITHOUT RESERVATION!! My healthy friends always keep telling me "I could walk out the door and be hit by a car today, Katie!" I have to tell myself sometimes: I have alpha1...that's it.

For those who are spiritual people or those who think they might like to pursue such things. I thought of a very close friend who is a deeply dedicated Christian who showed me something/told me how to deal with burdens on our hearts about 20 years ago. You may laugh. I know I did then but, it actually does help! She said that we need to quit carrying the burdens on our hearts and give them to God. Then she proceeded to give a demonstration of pulling those invisible burdens from her heart and lifting them up and throwing them up on an invisible shelf(think out of reach so you can't take them back). She then proceeded to say sometimes I have to do this twenty times a day because I keep trying to take them back! I encourage you who are overwelmed by your alpha1 or just plain lifes issues to try this method of dealing with your burdens.

Wednesday, May 23, 2007

Everything Isn't Always What It Seems...

That big honking box with augmentation therapy and equipment to administer it is only for a month...not 3 months. : (

I also foundout that: a) I have good veins b ) the Accredo nurse likes me but, it's too long to drive(which unfortunately I agree with) c) will be replaced by a nurse from Lakeview homecare{Rice Lake,WI}. I am not real thrilled about it...but, don't have much of a choice and I sure don't want to put the screws to the nurse who works part-time because she wishes to be a hands on Mom. I happen to think hands on Moms are cool!! My Mom & a couple of my sisters were, as well. An involved Mom cannot be beat, IMHO. I had hoped I would have more times to get the infusion process down. Now, I HAVE TO in my minds eye get it down in two more infusions.

What I did learn is w/ Zamaira after mixing the powdeed product w/ the water it is only good for 2 -3 hours. I also learned you cannot vigourously shake it or the pontential for destroying it!!

Sunday, May 20, 2007

Woot!! I gotta Brag!

Although, I didn't do the original 60 miles I signed up for I did complete the 38 miler in 5.5hrs. I remember Noreen James telling me she didn't expect me to finish and I told her " I might not finish first but, I WILL FINISH!!". I decided to change to the shorter course because I wasn't able to train consistently.

I would have gladly traded the smell of fresh cut grass, flowers and suntan lotion for more wind at the beginning of the trek. It was kinda tough on my lungs. We had plenty of wind throughout the trek! It was interesting....sometimes the head wind on hills benefited me and other times it hindered me. I tried to keep myself hydrated which I suck at under any circumstances! I also tried a Mango flavored gel. They have 100 calories. I tried to avoid the fresh baked goods at the rest stops because I figured they were largely made up of processed ingredients and would be harder for my body to utilize. It wasn't great but, it wasn't horrible either.

I did pretty well until after the last rest stop. I got about a mile into the last leg and the roads were such that they were energy stealer's(if you do any amount of bicycling you'll understand this). I pretty much"hit the wall" and kept pedalling. I just knew if I stopped pedalling I would never start back up to get back to Palmer Park. The last leg(10 miles) took 1.5 hours to finish. Once I got back to the bike trail every time I came to a crack or a bump I would "post"(it's something you do when you ride a horse English...basically lift your butt up) because my butt was sooo sore! I'm sure my Terry Damselfly bike seat was better than the Bontranger seat my bike came with. I had adjusted it three times since I first time I put it on. I was told not to do drastic adjustments or it could hurt my biking quite adversely. I'm hoping I only have to adjust it one or two more times. I also decided I am going to get a side view mirror for my helmet after all!

My sister Johanna came down to support me and try to spread the word about alpha1. Somebody asked me about whether I needed my inhaler like I did at the third rest stop and it opened the door for me to explain a little bit about alpha1 as well as the benefits of biking for my lungs. I also want to say that the smell in bathrooms at Big Hill park are worse than that of our two holer at the family cabin. OMG!! I don't ever want to use that bathroom again as long as I live!!!!

This was my first trek ever and I gotta tell ya....bicyclist ROCK!!! A couple of times when I wasn't in respiratory distress a bicyclist asked if I was ok. I got a lot of compliments on my Curious George bike jersey as they passed me. I do envy them for being able to bike and talk at the same time. I heard a lot of good mornings, hi, how ya doin',passing on the left and encouraging comments about the hills(either it's almost over or were on the downhill end).I also got an email from Ed Brailey(board member of the alpha1 association) saying he was tryng to get the Leader-Telegram to do a story on me in conjunction with my RCU charity walk.

Guess What....I didn't cry!!

It was no where near as scary as I thought it would be. Accredo Therapeutics sent out a nurse that was really cool and kinda near to my own age. The toughest part was watching the needle be stuck in my hand. I can remember bits and pieces of what she told me and did but, it's gonna take a while! She told me of a person so stove up with rheumatoid arthritis their hands were just near balls who self infused and I figure if they could do it SO CAN I!! It took about 2.25 hours but, that included paperwork. They are really thorough! They ask about advance directives, do you have enough money to buy food, do you have fire alarms and a bunch of other things. They ask these questions in our best interest as well as their own. I was surprised to hear that at one time they were giving a fellow augmentation therapy treatment and stopped after six months because he wouldn't quit smoking or clean his house. I certainly don't blame them but, MAN why would you keep smoking and not attempt to clean your home if it would enhance your quality of life and possibly extend it???

Thursday, May 17, 2007

Yesterday was a very sad day for me

I received my 3 month shipment of Zamaira(augmentation therapy product) with all the butterfly needle inserts and the sharps container. I didn't expect to feel that sick feeling in the pit of my stomach when I opened up the box and peered in! I realized I hadn't wanted to ever be getting an IV or if I did I expected to at least be 60 years old. I'm 41 and I'll be getting a weekly IV for the rest of my life(unless by the grace of God I receive a lung transplant) or until I can no longer afford it. I get my first infusion today. They are sending a nurse over from the twin cities to assist me until I can get the hang of doing it myself.

I would not be surprised if I did cry afterwords. I'm sure if I do though I'll likely joke with friends that it is because my hormones are all out of wack!

Tuesday, May 8, 2007

I'm still alive

I scratched on the Quadrupedal because I was sick and the CSL Behring sponsored Alpha1 retreat lasted through Sunday afternoon at 1pm. I had a beautiful long post that got lost in cyber space I composed 5/5/07. I will try to recreate it another day as I have an early morning dental appointment. I will also bring you up to speed on my Sunday afternoon escapades in the Mad City!!

Wednesday, May 2, 2007

No research...Going to Urgent Care Again

Johanna and I were all set to participate in what we thought was another research study. It turns out it is a continuation of one we already participated in! I was even ready to tough out driving by myself in Chicago May 20th just so the researcher could have me participate in the study. It was the only day/location we could agree on. I woke up congested & also fighting an absessed tooth. I'm on 500mg of Pennicillian 4x day for 10 days for the tooth. I plan to go to Urgent Care first thing tomorrow morning in regard to lungs. Hopefully, we can fix what ails me and the xray will help do that!

I probably won't post any over the next several days. I need to get some things done around the house before I leave for the alpha1 retreat that CSL Behring is sponsoring down in Warrens,WI this weekend. At this point I don't plan to participate in the QuadruPedal due to my lung congestion...I think I would be flirting with disaster. I just have this vision of me collapsing on a steep hill...not cool! The up side is I will be able to attend the Sunday speakers that Cory from CSL Behring wasn't aware of when he first spoke to me about attending.

I think I will likely tough out driving in Chicago May 20th the more I think about it. Driving around Chicago is way easier than driving in St. Louis or Dallas!! There are 3 stores that have shoes for hard to fit feet. I post them a while before I takeoff to Chicago in case someone wants to leave feedback. Plus, I want to check out one of three bakeries down there. Pasieka's, Dinkel's or D'Amato's. If you have any opinions on the bakeries don't be bashful about leaving a comment!!

Tuesday, May 1, 2007

That rattle & suction sensation in my left lung

I did a follow-up phone call to Dr. Krowka at the Mayo clinic. It was suggested to me last week that I call him for a recommendation of what to do about it. I had done so last Friday but, he had left for the day. Often times the doctor in urgent care will ask me if I want a chest x-ray. It seems that is what Dr. Krowka wants. What we aren't sure about is if he is adament that I make an appointment to see him.

I was thinking the earlier part of last week, I wish they could do a lung wash like you can your nasal cavity. I found that out when I received some sort of report from the alpha1 association, they can. There are some other things one can do about mucus stuck in your lungs. It all sounded kinda spooky to me but, I'd be willing to try any of them if it helped my lungs function better!! I didn't know till I spoke to Noreen James a weekend or two ago that if we don't drink enough water mucus can dry up and stick to our lung walls(not cool!). You see I had coughed up some see through yellow mucus with some blood. She said I should watch that. I had just completed a long bike ride when it happened. She said strenous activity sometimes will help bring up mucus trapped in the lungs....respiratory therapists encourage it.