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, November 1, 2017

Poker hands & Crossroads (part 1)

I had not realised just how long it had been since I had last poste so it looks like I have a lot of ground to cover. I will start with Horribly Hilly, National conference and heat exaustion. The Horribly Hilly Hundreds truely lived up to it's name. I wish I could have spoken to more participants but, they moved me from serving beverages to serving food. There were a few seasoned metric century participants that said they would never do it again. One of them had already completed 4 metric century before HHH. I was struggling with heat exhaustion even though all I was doing was dishing out beans. Later in the summer I broke down and cut my long hair due to struggling with heat exhaustion at work.

I had looked forward to attending the first alpha1 national conference in 10 years all spring however when I got there what I experienced and what I anticipated were quite different. I went to Loews for Saturday morning and sat down to breakfast. I didn't realise till I sat down at the table that Lorena from Indianapolis was there. What shocked me was she was on oxygen and only said good morning. More so that she was struggling with supplemental oxygen. During all the many alpha1 events I had attended in the past she had always been talkative and quite jovial. I then went into the exhibit hall and noticed that more people had passed away that I knew than I realised. I sat down at lunch with over a half dozen alphas.

I will set the view and share the story: Len Geiger (our celebrity bilateral lung transplanty and well known alpha1 speaker) was standing at 6 o'clock a the ajoining table to the left. At the next table Ric & Angela Logsden were at 11 and 12 o'clock (Ric an Alphanet coordinator). Dave Courtney (an alpha support group leader and bilateral lung transplant recipient) is sitting at 9 o'clock. Mike Hixom (alphanet coordinaor) is sitting at 4 o'clock and a couple from Shire are at 1 and 2 o'clock (she is an alpha and her husband is the rep sitting next to her. So we all are pretty well versed. I begin the conversation "You reach your saturation point." Which you can take several ways. I said "I have spent the last 10myears worrying that I had insurance to cover a lung transplant. I had looked forward to attending this all spring. When I got here I realised there were more who had died than I realised. Then it dawned on me that several of them had never even reached getting listed and were on supplemental oxygen. I also saw several who I knew and hadn't expected them to be on oxygen. I have reached the point I am ready to settle for shitty and shitty plus health insurance! I have come to the conclusion if the opportunity presents itself that if I have 8 years without having to have supplemental oxygen left and can go to work for myself and do I what I love I will take the opportunity to do so! Because we all know that when you get on supplemental oxygen you cannot enjoy thing the way you would without it." And none disagreed with it. I sat down with Dave Courtney Sunday morning for breakfast. We had a frank discussion about how the loses of people effect us. He did express concern I was anti transplant  (which I am not anti). He said he was anti transplant till his son changed his mind. I also talked about the fact I spent most of the conference feeling 70% depressed because of the deaths and those on oxygen. Crushed might be a better term. He said his wife doesn't come to many of these because she knows to many of those who have passed and it's very hard on her. He also invited me out to Texas to Javlina hunt (have-a-lena). I'm pretty excited about that for two reasons. I've really wanted to and it's ussually pretty costly. Ric Logsden invited me to Kentucky to hunt as well! I had really wanted to eualigize Cindy Wilson and my sister Johanna at the informal memorial service. I was shocked to see that is was 6 times the seating and 12 times the attendance of the last one I attended. I was one of the last to speak. I would love to tell you I held my self together but, I can only say I started weak with Cindy's and ended strong with Johanna's. I also want to make mention I sat and eat dinner with a couple of alphas from Johannas beloved alphapack support group Saturday night. They ended the memorial service with thr writing called the dash linda-ellis.com/the-dash-the-dash-poem-by-linda-ellis.html.

Ok now we get to the post title!

Through out our lives we encounter many poker hands and and occassional crossroad. We all want to say we handle them well but, there are always one or two we wish we would have handled different or better. The last sixteen months hasbeen quite life changing for me and I believe enough time has lapsed I think I can be honest about some of the things Bill said and texted that will lead to some understanding about why I say some of the things I am about to express. This is not an easy post but, I don't do pretentious well. In fact I believed this would be my last post as well. I am in the midst of creating a different life for myself. It may or may not be my last post? When I saw Bill's nephews obit in out hometown paper although it saddened me such a young man had passed away and I couldn't begin to imagine his Mother grief over the loss of a child....I was relieved to find a way to communicate with Bill. I called his childhood church and asked to speak to him. The secretary of the church was very excited that someone was calling for him. the call got disconnected but, I called back. At first he was deathly silent and all of a sudden he says "Is this your number? Can I call you sometime?!" I said "Sure. You bet!". Then he suddenly says "You know I'm retired! I retired lasy year at 55! I retired early!" I had not spoken to Bill in 15 years. The last time I spoke to him his wife had woken him up to talk to me and he bit my head off for waking him up. I would have called him back but, I wasn't sure when to do so and I didn't want my head bit off again. I had called his Dads to get his phone number and his da thought nothing of me asking for it or giving it to me. He mentioned Bill's oldest daughter was coming up from Indiana to take him out fishing. For the record I have known Bill since I was 10 year old and I'm almost 52. He worked off n on for my Dad for a littl over 10 yrs. About two weeks after the funeral I was at work and had gotten a text from him. It said "This is Bill Delaney. Let's talk. I texted back and get this text saying: This would not be a good time I have company right now. We eventually swap a few more text and it's nearing Fathers day and he is OFF THE CHARTERS verbally when it comes to fathers day being off limits. There is no doubt in my mind Bill was heavilly traumatized by Chad's tragic death. 

I am getting tired. I had the flu 2nd week of Sept and I'm on meds because I never got over the congestion aspect completly and need my sleep so this is getting turned into 2 parts. G'nite!!