November 2013, Heath moved to Salt Lake City, Utah to be listed on the transplant list at University of Utah Medical Center. We live in Eastern Idaho and have 3 kids at home (17, 16, 13). Due to my job and the kids school, we had to stay in Idaho. The kids and I made weekly trips down to spend time with Heath. Unfortunately, I have to keep my job for the insurance and income and we could not move together. December 18, 2013 Heath received a single left lung transplant. It was a true blessing! He broke records and was released 6 days later (home by Christmas Eve). He made great improvement!
Six weeks later, things began to change. He started having breathing problems again. He was diagnosed with rejection, a rare fungus and was treated for that, he had blood clots in his lungs and was treated for that. His airways in his new lung began to narrow. This made it extremely difficult forhim to breath. To help with this, he had close to 20 bronchoscopies to try to open the airways to improve his breathing again. All of this was to no avail.
Even with the issues the doctors allowed Heath to move back home in April 2014 to live his life again. We made trips to SLC every 2 weeks for appointments and bronchoscopies....but at least Heath was home and we were together as a family.
August 2014, we learned that Heath needed another lung transplant. The blood supply in his new lung was not sufficient and would not sustain this lung. We made it through the first transplant with some help financially, but I didn't know and still don't know how we are going to make it through this one. We don't want to uproot the kids again...so moving them to Utah to attend school was not an option. I still work in Idaho and have to maintain that job. The things that seemed so easy before were so much harder this time.....and I'm not sure why.
The one request tha the kids had before Heath went back on the list was to have Christmas at home this year....which we did.
December 26, 2014: We moved Heath back down to SLC to be put back on the transplant list. This was a hard thing to do the day after Christmas. Thankfully he is living with a wonderful family which eliminated the need to have an apartment there while maintaining our house in SLC. Heath has been on the waiting list for 17 weeks now and it as been a long wait. Again the kids and I travel back and forth to SLC to see Heath weekly. What a struggle this is. It is hard to watch the kids struggle with Heath being gone....emotionally it is hard and it affects them all differently. We have tried to remain positive and upbeat, but truth be told....we have all shed some tears...some together and some in the quiet places when we are alone. Of course having Heath 2 1/2 hours away is stress, driving to SLC every weekend is stress, trying to help our kids maintain some sort of normalcy in their lives with all of this is stress, not to mention everyday life.
We recently found out that income we thought would be coming in is not. Overall, we have lost $50,000 this year in income. We are trying to maintain with my income and Heath's disability. Needless to say, we are falling short in a lot of areas. We have sold everything we can so far and are looking at possibly selling our house...something I don't want to have to do. But..how do you go through a second lung transplant in a year and a half and afford all the expenses that come along with it, while losing income? I don't have the answers for that....I wish I did.
Ask for help is so difficult for both Heath and I. We are independent people and don't want to intrude on others. We all have areas in our lives where we struggle...right? Although I did not want to set up this fund, at this point, we have no other option.
I know not everyone can help, but please share our story and get it out there.
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