It's been quite a while since I posted for a number of reasons. The biggest reason is someone we loved deeply took a chance on a lung transplant and didn't get the desired outcome we had hoped for. We lost my brilliant (she graduated in the top 20 of her senior class, had an MBA and could solve a weird mathmatical problem before I could spit out equal), thoughtful (when fellow alpha Cindy Wilson passed she called me because she knew I would want to know and don't use Carepages) caring, adventuresome and preservering sister/friend April 25th, 2012 at 10:27am. It was a very life changing experience for not only her children but, her siblings and the Wisconsin Alpha Pack members as well. She had spent the better part of the last six weeks of her life in ICU and was to be moved to a regular room the day she died. We thought she was going to conquer her transplant challenges. It seemed sureal.
Johanna Ringeisen was diagnosed with alpha1 at age 45. At 48 she found herself a widow hoping to find a fulltime job. She did find a fulltime job delivering mail out of the Cleveland, Wisconsin office. Despite being a single parent of then 12, 14 and 15 year olds she managed to pay her home off early. Somewhere around 2004 or 2005 she had to become reliant on supplemental oxygen and she continued to deliver mail. She raised to boys who became Eagle scouts. Somewhere along the way she found time to play violin for the Fond Du Lac regional orchestra, become a board member for the Wisconsin Alpha Pack, watch her son Martin play college football at Lakeland college & graduate and see her youngest son join the Army National guard, complete a tour of duty in Iraq and attend college at her old university where he was accepted into the ROTC program there. She received a LVRS (lung volume reduction surgery) which allowed her to become less dependent on supplemental oxygen for a while till she got some kinda bug and had to return to depency on a concentrater or oxygen tank. She started gun deer hunting again at the family cabin. She got listed for lung transplant at Froedert Hospital in Milwaukee. She was diagnosed with breast cancer, lost a breast but, got a get out of jail free card like me. She was told that it could take 3 - 5 years before she could be relisted. It took 1 1/2 years! We were all relieved she got on Loyola's lung transplant list! She bought a cross bow and bagged her first buck. A 8 pointer no less!! On August 10, 2011 she received a lung transplant. We thought what a magnificent early birthday gift! She turned 61 August 13, 2011. She said it was so nice to talk without gasping for air. Although in January 2012 things started going the other way we were glad she was able to have six months of wonderful breathing. The chances she took were very valuable. For a time while she struggled in the ICU I questioned if I would/could muster the courage to reach for the proverbial lung transplant "brass ring" I learned I would.
The second reason I failed to post anymore because my android phone was no longer able to be used to post on here due to google's endless updated software. At the time I had been working towards a fundraiser for alpha1 research and financial assistance for alpha's struggling financially with medical needs. I wanted to be my own hero rather than wait for someone else to raise money for those type of things. Right now though I've decided to be my own hero for a time in a different way. I recognize how valued I am by my family so, I'm playing things by ear, slowing down sort of and trying to reinvent my life a little. I've always worked I've hardly ever played and too soon the ability to do some of the things I keep putting off may not be viable pursuits if I don't take better care of myself or I don't make the time sooner. For the last week I've debated whether to raise no produce, an acre or 1 1/2 acres. I decided on 1 1/2 acres but, before Johanna passed away I was hell bent on 3 acres. I'm going to remodel some rooms in my house this year, make more time for the cabin, try to be a blessing to Johanna's children and take even better care of myself. You know they say.....you only go around once in life! YOU BETTER MAKE IT COUNT!!!!
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