I have gone back and forth between starting an new page or just continuing to use this one. Well you can see which way I decided to go.
I am going to leave the old information below if anybody wants to see the notes from the last transplant. All updates from this point will be from this transplant. Thanks for your prayers and support.
Where do I start? On Thursday February 16, 2017 I was told I was being put on the Lung transplant list at Loyola University Hospital. Getting on that list is a blessing, as I was denied two times before at other transplant centers in Wisconsin. This journey started awhile ago with a discussion with one of my doctors, who casually brought up a lung transplant, when my lung functions seemed to be decreasing again. He said, "I don't think you should do it now, but I think it would be wise to think about it for the future." To which I thought, I am doing well, why would I consider doing that? About a year ago I started talking to UW Madison about getting into their program, but after a review with their team, they said they did not feel I was a good fit. This was a huge blow to my heart, and certainly a reality check, because being denied never crossed my mind. Well I picked up my boot straps and rushed with my records over to Froedtert Hospital in Milwaukee. The fun starts over as you wait to see if you are worthy of their program...fingers crossed! Nope! I am not someone who gets depressed about a "no" since I have been in sales for a long time and am used to that word. But this, this "no" was hard to swallow. It felt like this possible opportunity to improve the quality of life might not be an option. This all transpired in the February -April timeframe of 2016, and at that point I put it to the side and got back to focusing on family and work. Well, kids tend to show us what we do not want to see from time to time. I was sick for a few days towards the end of summer last year and was in bed or on the couch most of the day. My daughter loves creating cards with pictures, this one was a get well card which said "I hope you get better dad because I would like to play catch with you again". I thought that was so nice, and then I opened up the card and here is a picture of her standing up with her glove on and me sitting in a lawn chair waiting for the ball to be thrown back to me. That was the image that my daughter thought of me, not as a statement of me being lazy, rather that was the only way I could actually catch and throw the ball without getting winded after two minutes. That was the NUDGE that I had to do something, it was the NUDGE that I had modified so many things in my life to accommodate this disease that I was no where near who I used to be, and certainly not the father I needed to be for my children, or husband for my wife, and I needed to change that. So, I spent the next month researching everything I could in regards to transplant facilities, conditions, and the evaluation process. I called and talked to the doctors and bounced off of them if they were willing to look at someone who was young, strong, and very good looking, but had CVID. I ended up choosing Loyola University Hospital and Duke University Hospital. I was able to visit both, but ended up focusing on Loyola due mostly to the comfort level my team had with the pulmonologist and other staff we met. I did go through extensive testing at both facilities.
Over the last two years I have become more dependent on portable oxygen, and now wear it 24 hours a day. #breathing without o2 is not fun
So how did I get here? The sexy version goes a bit like this...when I was in college I fell in love with Wildland Firefighting, with prescribed burns, and helping the WDNR with some spring fire season in WI. I then started with the US Forest Service, and did everything I could to get on fires out west. I spent most July, August, and September back and forth between Eagle River, WI and anywhere in Idaho, Colorado, California, and states all over the west. I even did a stint on a Wildland Hotshot crew for a while. It was the ultimate job in the world, and I loved the traveling and seeing some of the natural jewel of this country. But over time I ate a lot of smoke, dust fumes, and dirt which had something to do with the diminished lung function.
The medical version is linked to something called Common Variable Immune Deficiency, and interstitial lung disease. This fun issue has caused scarring on my lungs, which has led to my immune system constantly attacking the scarring, which led to additional damage. This has been going on for some time, but I never knew it was happening until 2010 when I had a lung biopsy and they found the active markers for CVID. I am lucky to be under the watchful eye of one of the leaders in the research of CVID, he has certainly improved the quality of my life.
So all this brings me up to waiting for the perfect set of lungs, which can happen at anytime. I will try to keep this site updated with anything that changes.