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

Saturday, December 29, 2007

Greetings from Snowy Northern Wisconsin!

I was trying to remember when it hadn't snowed when I was driving home from work. Our snowmobile trails were opened by December 15th for the first time in 8 or 10 years! WOW!!

I've been sick. First with lung infection. Followed the next week with 3 day stomach flu. YUK!! I am still working the long hours. I turned my laptop into a shop to be worked on. I miss it but, I'm probably getting more sleep because it's not there for me to get on when I get home.

I am having hit and miss luck with my infusions. I just renewed my fitness membership for 4 months. I hope I can squeeze in 1/2 hr workout a day and that it will improve my lung function. When I went out to my truck last night I had to stop every so often to regain some air but, it was only 11 above.

Have a Safe and Rewarding New Year!!!!

Monday, December 17, 2007

Chicago became....returning to dodge

My plan this last weekend was to attend the Alphapack Christmas party and continue onward to Chicago. Between sick friends and bad weather it was deep sixed! The fact that the Alphapack Christmas party was cancelled due to the threat of 9" of snow(to the best of my knowledge never came to pass) was a HUGE disappointment!!!

In previous interviews I had said "You have to own the disease...You CAN'T let Alpha1 own you." which I truely believe. As long as one remains inactive and silent.....the quicker you're going to die and the slower a cure will be found!....EQUALS letting Alpha1(A1At) win.

I had hope to meet new alphas and help them see that it's so much more advantageous to them to be active and promote awareness than remain quiet. As long as one stays quiet fewer new people are accurately diagnosed, less new people participate in research, less progress is made and the further we remain away from a cure.

Aside from my grumble I guess it turned out for the best all n' all. I had been under the weather and called to make an appointment w/ Urgent care and for some reason wound up going to the family practice doctor who diagnosed me back in 2003 for alpha1(at my request I was tested for alpha1). He knows nothing about alpha1. He asked the nurse outside the door "WHAT'S augmentation therapy?!" He came in and couldn't accept I was only blowing a peak flow of 200 when I have come to U.C. before blowing as little as 125 on a peak flow meter. He also suggested 3 times I be tested for allergies. My visit was more premature than usual since I opted to actually use my 2 remaining vacation days as actual vacation days(where I work there isn't sick leave offered). I thought he was putting me on z-pac and 15 day course(that's what he said) of prednisone. He put me on 5 day 500mg Azithromycin and 12 day course of prenisone. He never asked if I had any severe reaction to 500mg azithromycin. End result: too many hours so I suffered through it. Glad it's over!! Came back early and slept 8hrs last night and hope to sleep another 8 -10hrs tonight as the sleep had a marked difference on my peak flows. My best peak flow yesterday was 175. Today it was 250. Although I would have liked to have taken the cancer wellness center tour, visit the Art Institute and Shedd's Aquarium.....Chicago isn't going anywhere. I can visit another time. It was really nice to only work a 50hr work week for a change!!!!

Tuesday, December 4, 2007

I Realized I Forgot To Mention Some Things......

Firstly, I got my flu shot on November 1, 2007.

Some of those medical bills I received I was told to ignore and that someone would soon be calling me to apoligize for the mistake...which that individual did.

I also thought I had stated back when I was going through cancer surgery and recovery when I became cancer free I intended to do an affirmation walk every year. That it would be a different organization every year to keep it interesting for me(and spread the money around).

I couldn't find anything in my posts back in July or August. I am considering doing the Stepping Up To Wellness walk for the Cancer Wellness Center of Northbrook, Illinois. I will make up my mind after I have hopefully taken a tour of the facility December 17, 2007. I'm sure some might be wondering are some of the reasons:

I have friends that live within 10 miles of it.

I think there maybe people I graduated high school with or attended college w/ that live in the vicinity.

I like what I see they offer to people fighting cancer, cancer survivors and to caregivers of those dealing with cancer.

Nuff' Said!

Sunday, December 2, 2007

Thinking Outside The Box!!!

That's RIGHT! That's what I did Thursday. I psyched myself out!!

I got one Saf-T-Intima out of the box and reached for a second one. I then looked at the second one and told myself outloud "You don't need that second one because....You ARE going to get it on the FIRST STICK!!" I then proceeded to return the second needle set back into the box it came out of. Secondly, I told myself that if I didn't get this right Accredo was going to get those nurses from homecare to start coming back in! Talk about instilling the fear of God in myself! It worked like a charm. My hands didn't shake, I didn't blow a vein, I didn't have a vein collapse and I got it first stick. Let's keep this routine going! It certainly helps my confidense a little. The folks at Accredo would not do that though....They were as disappointed as I was with the Homecare standards. Besides that Leann from Accredo sez' the boss says "She knows her stuff!" According to Leann coming from the boss "That's high praise!"

I wanted to comment about the homecare nursing team. It really isn't the nurses fault. They did care but, ultimately the leader of the team set the tone....not to mention the rules the nurses have to live by. The nurse that leads the Accredo nurses has great leadership ability and it shines through in the job that the nurses that go around giving people infusions and teaching people like me how to self-infuse.

I did absolutely nothing constructive today unless you call going to Wal-Mart and Bookworld in Rice Lake today. The Wal-Mart in Rice Lake has a bigger selection of things and sometimes better prices than the one in Ladysmith. Since I was in Rice Lake I decided to stop at the bookstore to see if any new sailing magazines came in. YES, I was rewarded with Cruising World & Sail magazine. Now off to read some KJV bible.

Why Don't You Just Get A Port???

Why don't I just get a port? Actually, in the beginning that's what I wanted to do because I was chicken about sticking myself. I asked my pulmonologist about it. He said "I am not in favor of it due to the fact they are prone to staph infections." My reaction was.....Say no more! When can I start learning how to self -infuse direct into my veins? My father had an older sister who he loved dearly that died of as a result of a staph infection.

The reality is that whether or not you have a port to stick a needle in or stick the needle into vein you're still going to have to stick yourself or someone else will have to....there is no escaping it.