the difference a year can make

One year ago today we arrived at Mayo.  It was a Friday appointment, the earliest one we could get when I started calling on December 28.  We had spent the day after Christmas in the emergency room only to return in the early morning hours of December 27.  We were miserable and exhausted and scared and confused and frustrated.  We had been given so much conflicting information from doctors who kept upping Kenny's meds and taking a wait and see approach, but all of my middle of the night online searching about his symptoms pointed to the same answer - that the only cure for a failing liver was transplant.

We had driven to Phoenix after work on Thursday night and finally located our tiny Airbnb a little after midnight.  We planned to stay a couple of nights and drive back over the weekend.  Kenny had early appointments for labs and testing then we met with a doctor later in the morning.  We were super impressed with Mayo's facilities and technology (for example, they had Kenny's lab results ready for the doctor to review moments after they took the samples instead of requiring multiple appointments weeks apart).  We were anxious to get answers but I think we both hoped against hope there was some answer besides a liver transplant, which seemed like a huge and scary solution.

When the doctor came in, he greeted us and sat down to review Kenny's labs.  I will never forget the moment he looked Kenny directly in the eye and told him he needed a new liver.  He said we could get evaluated and on the transplant list now, while Kenny was still in relatively good health otherwise or we could wait ten years and the answer would be the same.  Then he said the thing that shook us both to our cores: "But the truth is, I don't think you have ten years."  My brand new husband, who was 37 years old with two young children, didn't have ten years?  It felt like a nightmare.

We went to eat sushi, Kenny's comfort food, while we waited to hear whether we could start the evaluation process immediately.  The amazing doctors at Mayo, particularly the doctor we met with, moved heaven and earth to get more than 25 appointments set for the following Monday through Friday.  We scrambled to make arrangements with work and arranged places to stay and tried to figure out the budget for another week in Phoenix.  Over the next week, Kenny was poked, prodded, scanned and generally harassed to see if he was a good candidate for transplant.  He even had to meet with a  psychiatrist.  I won't go into all the details because this is supposed to be a post, not a novel, but it was a process that was hard and had a lot of lows for us.  What had seemed like a worst-case scenario (transplant) was now our only hope and we were terrified he wouldn't get listed. 

In February, after Kenny was hospitalized for over a week in Las Cruces, we knew we had to make the difficult choice to move him to Phoenix.  He could get treated at Mayo and it would make him a better candidate to be closer to the transplant center.  While it wasn't easy, we were grateful we were able to do it.  We were grateful his work was understanding, grateful my work allowed me to switch to a 4/10s schedule, grateful we had worked hard to pay off credit cards so we could max them all out again, grateful we had added Kenny to my insurance at work so we could even be at Mayo and afford something like this.  So many things to be grateful for...but it was still a hard spring.  We were supposed to be newlyweds and this was not the way we planned on spending the first year of our marriage.

We didn't know the Phoenix area and we didn't know how long he would be there so finding a place was challenging.  The first neighborhood was a little scary but he had wonderful housemates and a great backyard with a big pool (that he never got in because it was too cold - who knew pools in Phoenix aren't heated so they don't really use them in March/April).  My parents generously allowed us to use points from their timeshare so Kenny got to live at a resort for several weeks.  Despite hoping and praying that Kenny's time on the list would be short, we ended up needing a third place and we found a great little vacation rental condo in a beautiful complex near Mayo.  They even allowed us to extend for an additional two months and refunded what we didn't use.  So much to be grateful for. 

Being apart was hard and Kenny had to sacrifice lots of time with the kids.  While it was hard on us too, I was able to make the trip every weekend to see him.  Even though the circumstances were challenging, and I was usually so tired I just wanted to hang out and do nothing, we cherished our weekly mini vacations each weekend.  We were especially blessed with a nice cool spring by Phoenix standards.  We were also able to take the kids and Mary to see Kenny at least once every month he was gone and we were so blessed that their mom and Mary were able to fill in all the schedule gaps left by Kenny's absence.  Mary and the kids drove lots of miles back and forth and we are so grateful for her help during this season.  Divorce and co-parenting is hard and messy but Kenny and KayCee worked so hard to do right by their kids and it was a huge blessing that we were able to get through this challenging season working together.  KayCee took on a lot of extra load while Kenny was in Phoenix and I'm grateful for her grace through it all. 

Finally, at the beginning of April, Kenny made the list.  Foolishly, we thought getting on the list would be the hard part.  However, the hard part was just beginning.  When he was evaluated in January, we were told if he got put on the list immediately, he would be very near the top of the list (i.e., first in line for transplant).  Unfortunately, being in Phoenix allowed Mayo to take over Kenny's care and by April, they had gotten him much healthier.  Transplant (we learned way more about this whole process than anyone ever wants to) is based on a number of factors (location, symptoms, etc.) but a big part of it is your MELD score.  Even though Mayo would never be able to cure him without a transplant, he was doing so much better that his MELD score had dropped and now he wasn't as high on the list.  We felt stuck between a rock and a hard place.  How long could we keep him in Phoenix waiting?  Was God planning on just healing him miraculously without a transplant?  Did we jump the gun moving him?  We agonized over these questions and many more.  We decided we'd take any organ we got - high risk, Hep C, whatever we could get, we'd be grateful and trust God to manage the details.  Kenny put a special ring tone on his phone, Journey's "Don't Stop Believing" and we waited for a call.

On May 11, he finally got one.  He was a backup.  Even though we knew it was a long-shot, we were pretty bummed when it was a no-go, but we were so happy for the person that received the transplanted liver.  Kenny would end up getting 11 calls total  (a Mayo record) and 10 led to crushing disappointment.  Sometimes the organs went to other donors with greater need, so even though we were bummed, we could celebrate another life saved.  Others, however, were deemed "low quality" and were not used for transplant.  Sometimes the organs came from donors on life support who "did not progress" and therefore, the organs were not viable.  These calls were the hardest - it was devastating to us that someone had lost his or her life, had made the choice to be a savior for someone else, and for whatever reason, was unable to do that.  It felt so wasteful in light of our need (and the needs of many, many others). 

Ten times, we got a call and ended up not getting the transplant.  A few times I was with him in Phoenix, several times, I dropped everything and drove there, sometimes leaving work, sometimes leaving in the middle of the night.  My sweet sister even made the trip with me.  More than once Kenny made it all the way to the hospital, checked in, did bloodwork, got scrubbed clean, only to be discharged and sent home.  A couple times they even put him in a fancy heated gown and had him right outside the OR ready to go only to call everything off.  A few times the transplant team kept him overnight at the hospital because even before we knew what was going to happen with the organ we were waiting on, they had another organ lined up as a backup.  So many opportunities and we were grateful for each one...but I really can't express how hard it was to check out of the hospital and go home, or say goodbye again so I could make the drive back to New Mexico alone, after believing with all our hearts that the call had been "the one".

Most of you have heard about the miracle that came for us on July 8, 2019.  Most of you know the details about Kenny soaring through his surgery in 4 hours, getting out of bed and walking two days after the transplant, and getting discharged the Friday after his Monday transplant.  Many of you know how we spent 4 weeks in Phoenix while Kenny recovered and how great he did.  How grateful we were to be home in August.  How he went back to work in November right after his 4 month checkup.  How the doctors at the checkup told him he was a rockstar patient.  How he's on an incredibly low dose of anti-rejection drugs because Carl (the new liver, named after Kenny's real-life transplant mentor) is such a great fit.  Many of you know that hundreds of people helped us financially so that we won't be stuck in the pit of medical debt.  Many of you gave so generously to us and I can't say enough how grateful we will always be for your kindness.  Some of you have seen Kenny and witnessed for yourself what a miracle he is, how healthy he looks.  He has said over and over how good he feels and there is no telling how long he felt bad before he even knew he was sick.  I don't mean to go on and on about this (sorry, too late I suppose) and I don't want the liver transplant to be the whole story of our lives - I know God has bigger plans than that.

I'm not sure why I started writing this other than to stop and acknowledge what a difference a year has made.  There have been many milestones but for whatever reason, the day we heard Kenny needed a new liver to survive the next decade feels like the the start date for me.  To be where we are now, a year later, is nothing short of a miracle.  I know it seems like we throw that word around a lot, but we mean it wholeheartedly, in the most literal sense of the word.  We truly believe our lives have been filled with miracles - big ones and little ones.  Even the fact that we met, fell in love, and married when we did was a miracle.  I think our lives are probably always filled with miracles.  Perhaps we just did a better job of paying attention to them over the last year.

I will end this with a couple thoughts:

1. Is there something you've been putting off?  An apology?  A phone call? A doctor's appointment?  A life decision - big or small?  I'm so grateful we got serious about Kenny's health and went to Mayo when we did.  Can I encourage you right in this moment to do whatever it is you've been debating doing?

2. If you're not an organ donor, can I beg you to become one?  Seriously, I'm not asking, I'm begging.  I hope with all my heart you survive the next year and live a healthy, happy, very long life.  But in the event that you don't, you could literally save a life - more than one, really.  It could end up being the most amazing gift you give your entire life.  I have seen firsthand how hard doctors work to save people before organ donation even becomes an option, the lengths they go to in order to ensure the organs get used and are given to worthy recipients, and finally, the miracle that comes when an organ saves a life.  The way it changes not only the recipient's life, but also the lives of every person that knows and loves that person.  I get that we are all dying.  But when you donate life, you give someone more time with the people they love and you extend your own legacy.  That's a pretty miraculous thing to be a part of.  Here are a few tips on how to become an organ donor but the biggest thing is to let your loved ones know how important it is to you.  https://www.nolo.com/legal-encyclopedia/how-to-become-an-organ-donor.html

3. We would not have made it through this last year (or any of the others, to be honest) if we didn't have our faith.  We believe there is a God in heaven who loves us so much that he gave his only son to save us eternally - not just for the time we spend on this planet.  He is the single most important relationship in our lives.  He loves you, too.  I promise, He does.  He wants to be your best friend and all you have to do is let HIm.  If you don't know Jesus, you can.  This could be the greatest year of your life if you make that single choice.  If you have questions about how or why, Kenny and I would love to talk to you.  Reach out and we will do our best to point you in the right direction and we will pray for you and with you.  

Well...

This started out as a post about what a difference a year can make and has ended up being a novel.  That happens to me a lot.  The post got so long, I had to move from Facebook to this blog - which might inspire me to resurrect this old thing, so stay tuned for more random thoughts.  If I keep up my current pace, I'll post again sometime in 2023. 

If you've stayed with me this far, thank you.  I love you and I pray this is your best year ever.