Wednesday, April 22, 2015

T is for Transplant


I want to talk about transplants today.  As in donating an organ and saving a life. Specifically My fathers life. This is our story.   Pull up a chair, this may be my longest post I’ve ever written.  Almost 2 years ago in July, my dad underwent a double lung transplant.  When he was first diagnosed with his rare lung disease, I was devastated and that’s  exactly when I began this blog.  I needed an outlet. I felt so lost because I was so scared I was going to lose him.  The disease progressed quickly and he was soon in a wheelchair , on high amounts of oxygen.  Dad traveled to Santa Domingo 3 times to try the stem cell option.   Stem cell treatment is not 100% legal in the US and is only used right now in the US if you have cancer.  It seemed to be working and we were so optimistic.  Then we waited for this specific process that took a long time to get just right and when that day finally came and Dad traveled out of the country to get the treatment, it didn’t work.

That’s when I saw the light go out of Dad.

Dad had been dealing with a team of doctors at one hospital in Dallas that will remain nameless. They  told Dad that he did not fit the criteria to be a candidate for the donor list.  These are tough words to hear when you’re in early 60’s.  So basically Dad gave up knowing that there was nothing else that could be done for him. I struggled and became very angry. I questioned my faith. I cried until I thought I surely would go dry of tears.  Daddy was declining by the week and all he could was get up and sit in his lazy-boy and either watch TV or play games on his ipad.   He started slowly getting rid of his prize possessions.  Dad played guitar and had an amazing collection.  I noticed those were disappearing.  Then he mentioned he was selling the Harley.  That’s when I woke up like someone slapped me and realized what he was doing. I was so torn- I thought he was giving up.  What else could he do though? Without any hesitation I told Daddy that I would be buying the Harley!!   God is good! You see, just a few months before Dad mentioned his bike, Todd sold his.  We were starting to combine households and prepare for the wedding , and financially it was a good decision because of his payments.  It didn’t take long for Todd to get antsy and regret his decision and it was funny because I kept telling him to “hold on, there will be a bike for us soon”.   Of course I never would have imagined it would be my own Dad’s!

My cousin Dusty happened to do some volunteer work at another hospital in Dallas called UT Southwestern. It’s a teaching hospital and that makes all the difference in the world! Literally.  So its kind of crazy how it all started but Dusty was in line in cafeteria and struck up conversation about Daddy. She figured what could she lose by asking?  That person said to go talk to another person and that then of course that person put her in touch with a lady who listened and called Dad the very next day.  I cant make this up.  She called on a Wednesday and by Friday he had appointment to go meet her and other staff members.  He “failed” their test so to speak but not without another chance. They gave him a list of things for him to work on such as walking more around the house, using the treadmill, etc.  He needed to build up more stamina than he had.   Remember , Dad had given up by now and so he was not trying to improve his stamina and I don’t think he thought he could.   Two weeks later, he went back and passed their criteria. He officially became eligible to go on the donor transplant list.  Now the wait began.   It was a joyous celebration and I saw a light flicker in Daddy’s eyes again.  Hope . That’s all he needed was hope again. 

So we waited and waited.  A few months later after being on the list  we got “THE CALL”.   Dad and my stepmom Deb rushed to the hospital and all the many preparations began.  The process takes hours to prepare before the actual surgery begins.  We also had to wait on the lungs that were being Careflighted in.  So they took Daddy back and intubated him and he was prepped to go.  When it was all said and done- the donor lungs were a NO-GO.  They found the slightest pocket of fluid on one of them and the Dr’s voted no transplant.  Now, in meantime Dad was unconscious and to make a very very longer story short, Dad died on the table.  The surgeons of course saved him within seconds but it now opened a whole new can of worms .

The false transplant process really did a number on Daddy. He was so weak and he had to stay on tubes for days.  The doctors needed  to basically start over on the game plan and the next set of actions for a transplant.  It was the hardest thing to tell Dad when he woke up the next day – that he DID NOT have new lungs.   He was in ICU , hooked up to all these machines and to know that he had to continue struggling with his bad lungs.   Oh my , this is so hard to type out right now. I’m crying again.   It was determined that when and if the next match comes up, it had to be perfect and no more false starts again.  He wouldn’t make it.

The good news is that through all that, the factors that had to be matched up got changed. Example:  the first donor had to be of a certain height and the lungs a certain size- that changed to different criteria.  Nothing can be easy with Daddy ( or me for that matter).  Daddy had a heart surgery 5 years ago. The unnamed hospital I mentioned above totally botched some parts.  They didn’t patch him up correctly and caused some internal scar tissue.  Its little things like that that can cause a lot of heart ache down the road for the surgeons.  The surgeons actually had to come up a whole new plan and approach that had never been done before.  Being with this teaching hospital was so amazing. The doctors are old and seasoned and wise and young and new and innovative!

Fast forward another few months, Daddy never left the hospital after the “false alarm transplant” and was getting more weak by the week.  Deb and I were taking shifts – she the daytime and evenings were mine.  Todd would come up often too and we took turns staying the night with him.  It all became very scary because Daddy got very anxious and didn’t want to be alone. He used to never be like that but we didn’t want him stressing out because it was too exhausting for him.  By now, he couldn’t even eat solid foods because it took too much energy to chew.  Can you imagine that?  I had been so lucky with my job because I wasn’t traveling much at all which allowed me to be at hospital every night.  BUT, my luck ran out. I was being sent to train a large class in Jacksonville, Florida soon for the whole week.  It was the week before I had to travel and I kept telling Daddy that we better get “the call” that day or the day after or one day that week. I said it would be my luck that the one week I’m gone, he would get the transplant.  It was one night that I cant get out of my head. Todd joined me at the hospital that evening and Daddy told both of us that if there wasn’t a match soon, he wanted to go home.   He was tired of living at the hospital for the last several weeks.

I understood but I couldn’t accept it. I stepped out of the room and broke down.  Todd told me to not be angry and that Daddy lived a good life and that he was tired of fighting.  At this time, Daddy’s quality of life was just above zero.  He was on the highest level of oxygen and he could still barely talk, breathe or move.

It was a Friday night in July and I was going home first to have dinner with Todd before I headed to the hospital.  I never did that but it seemed like it was ages since I had really seen much of Todd since I was at hospital every night.  What I haven’t mentioned yet was that we were also supposed to be planning our wedding and had set a date for August 31 of that year.  We bumped the date up so that I could have both parents at my wedding.  Originally we wanted to wait another year for financial reasons.  Todd understood the urgency and so he didn’t hesitate when I asked if we could marry sooner.  It was looking as if that date would still be too late.  So back to the Friday night… I got home and my phone rang and it was Deb.  She called me every day on her way home to give me update on Dad’s day and I called her every night on way home with updates on his evening, nurses, etc.   I was in the other room from my phone and Todd said your phone is ringing. I said oh its just Deb calling me with the lowdown of Dad’s day.  Hahaha!  I called Deb back within minutes and it was the best call ever.  TONIGHTS THE NIGHT! WE ARE GETTING NEW LUNGS!!!
The surgery wasn't going to happen until much later that night. Deb was going home to grab a few things and Todd and I still went to dinner. We all met up at the hospital around 8pm and they took him back around 9. I was able to kiss him and tell him that i'd see him in the morning with new lungs. My Aunt Brenda who is dad's oldest sister came too and we were in a private waiting room.
The surgery took almost 7 hours and it started a little before midnight.  A horrible thing was that there was another family in the waiting room with us and their person didn't make it.  It was gut wrenching and it added to the stress and emotions we were going through.  We played cards and talked and cried and prayed and they all tried to nap but I couldn't.  The nurses would call every hour or so to give us an update and then they said the surgeon would come out when it was over.
Around 6:30 am the surgeon came out to talk to us.  The good news is that Daddy had new lungs. The bad news is he was bleeding to death and the surgeons couldn't stop it.  They said they did everything they could do and that it was up to him and God to pull through.  I was so upset. My stepmom Deb was a rock! She calmly said then we got this because GOD didn't bring us this far not to make it now. Sure enough 24 hours later, they were closing his chest up and taking out the tubes.  I was able to visit him Saturday and Sunday and then I had to go out of town for work.  The hardest part was behind us and I was OK to leave for 5 days.  Then the best part is that 6 weeks later- a very thin, fragile Daddy with a mask and his walker- walked me down the aisle and gave me away at my wedding. 
There was so much more that happened during his recovery like a blood clot that went to his heart and he died again on the floor which they promptly resuscitated him again.  Great crazy stuff like that but I will save that for another post. Ordinarily, I would break up a post like this 3 different days but it also felt good to get it all out one long post. Thanks for those who hung in to the end. 
I am so blessed to have Dad not too far away who is alive and well!!
Please consider being an organ donor.  It just takes a second at the DMV to check the option.  Transplants are life changing and saved my Dad.  Oh and in the south, we always say Daddy no matter how old we are!!
 

9 comments:

  1. Wow, you're already on "T?" I'm so behind on my reading. First, I can't believe it's been almost TWO YEARS. I remember we started reading each other's blogs as this journey began for you, right before the false alarm set of lungs. Things truly happen for a reason, and while the sad part of transplant is that someone died, they live on in the recipient of their organs. Is there any better gift?? Love you <3 <3 <3

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  2. What an amazing inspiring story. You and your family have been through so much and I admire your strength. I loved reading how your Dad recovered and walked you down the aisle. You should send your story to Ellen.

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  3. What an amazing story and so happy it had a happy ending.

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  4. A wonderful story. A very lucky man!! Full lung transplants are so hard!

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  5. What a great story; life has so many ups and downs and people can get through it - the right kind of people, that is. Sounds like your Dad is one of them.

    God bless the donor and his/her family. Such a gift.

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  6. I'm so glad that your daddy is still here with you! I'm from the south too and I call my father daddy too!

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  7. wow. What an amazing story. I am so glad that things are well now.

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  8. Thank you for sharing, it's tough when something so close to you and to open up sometimes can be difficult.

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  9. I will never ever forget all of the crazy and the beautiful ending of him walking you down that isle. God is so good. And He is so faithful.

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