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!
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