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

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" 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.

1 comment:

noreen said...

I cover my butt. It's simple logic with my alpha-1 diagnosis. I don't expect anyone to "understand" what I have, so I take steps in case I might walk into a chest-cold festival. It doesn't always work somedays. That's life. Simple things like hand-wipes or liquid antiseptic are great things to carry around. Shopping cart handles. Door knobs. Dollar bills and coins are also quite dirty. Anything someone else has handled seems to be fair game to may or may not hold germs. I drink from sealed or capped containers when traveling. And not even my husband, or a friend, drinks from my water bottle. I don't care how long ago they had a cold,'s just not worth it. (Kisses from my hubby, of course, don't count.) I also do my best to stay away from harmful chemicals, dust, fumes, and smoke. Not an easy task. I'm at 23% lung function on a good day. It's all I have. I often envy anyone with 50% lung function,..and that's not great either for that person! I hope to hold onto what I have as long a possible because it's not going to get any higher. So it's best I take care of myself. You are doing all those things and running around like a marathoner! Good Lord, Mother Mary, and Joseph. Seeing your doctor regularly is wise too,...let them hear your problems or concerns. That's the best place to be an advocate,...for yourself and others. And it sure appears that you are taking steps to ensure your lung health. Keep it up, Katie.