Folding bikes, sunshine and hope for transplant.

image

Folding bikes

Have you ever seen a folding travel bike? They’re pretty cool little engineering marvels. They are perfect for zipping around small areas and sightseeing. When you’re done, you fold them up, throw them in the trunk and head home.

Robin and I spent a few hours on these two little bikes yesterday afternoon covering 14-16 miles. We cruised around a beautiful lake in Kissimmee, Florida and then loaded them back into the car and headed across town to explore Celebration.

I always feel a bit strange pulling into the entrance to Celebration. It was in Celebration, at Florida Hospital on May 4, 2011 where a doctor with terrible bedside manner dropped the transplant bomb on me. She was so matter-of-fact, like an auto mechanic telling me my car needed tires, except she was telling me I was dying.

That was more than four years ago. Some days it feels like ages ago and other days it feels like yesterday. Today it felt like both. I felt a little anxious driving past the hospital entrance. I flashed back to my days there and remembered that the goal was to get me stable enough to fly home to get on the transplant schedule at Lahey Clinic. I remembered making small talk with the Jetblue agent who wheeled me through the Orlando airport while Robin walked behind. It felt like yesterday.

image

Then,  just a couple hours later, it felt like ages ago while Robin and I laughed and ate ice cream at Kilwin’s after exploring the streets and trails of Celebration on my sister’s old rusty, old, folding bikes. We pedaled just under 11 miles in 90 degree heat. Our total mileage for the day was somewhere around 15.

Last week I spoke with a new friend who is new to the transplant list. He is at the very start of his journey like I was just yesterday but so long ago here in Celebration. He had so many questions and what ifs to go through with me. I could hear the unsteady wavering of uncertainty in his voice and was struck once again by the fact that his primary concern was not his own survival but the wellbeing of his family. He voiced what I remember first saying in that Celebration hospital, “it’s too much money, I’ve had a lot of good years, why should I go through with it?”

That thought will only get stronger while he waits and his condition continues to decline. He feels sick now but I didn’t have the heart to tell him that his days will get much, much worse if he is like the majority of us. Instead, all I could tell him was what I continue to learn on this journey; life is good and worth fighting for.

That’s easy for me to say now but back then it appeared to be far from true. Back then it looked like financial ruin and pain were the only certainties. When you fill your time doing Google searches trying to get an idea of your chances of survival, hope is tough to find. When you see pictures of your yellow self on smartphones and Facebook you can’t help but get discouraged.

I gave my new friend the same message I give every transplant person I talk to. I told him that I found Hope in faith, strength in honest prayer and peace that had little to do with my survival. I told him how I went through being angry at God, discouraged and defeated and somehow emerged being determined to PUSH on.

image

My girl

Sitting at a table shaded by a large, red, canvas umbrella outside a quaint, little, overpriced touristy shop with the girl of my dreams, enjoying every taste of hot fudge and chocolate swirl ice cream less than a mile away from where life came to a screeching halt just over four years ago, I felt thankful. Since my transplant on May 7, 2012, my girl and I have attended three more graduation ceremonies where our children received degrees and advanced degrees. We’ve cried sweet tears seeing them celebrate their weddings and anniversaries. We’ve run and biked hundreds of miles, traveled thousands of miles and sat on tropical beaches. And now, this girl who started standing next to me 34 years ago and I, are shopping for adorable little outfits and getting ready to be Nana and Grampa.

Sitting here watching the sun come up this morning in Kissimmee, enjoying a couple weeks of vacation from the job I love so much that I don’t think of it as a “job” at all, I look back at the waiting, the decline, my transplant and the pain of recovery as the hardest challenge I have ever faced. It was brutal. It was awful. I wouldn’t wish it on my worst enemy. But, hear me clearly my friends who are waiting, if my liver went into rejection right now and I needed another, I would do it all again because of how good life can be.

I know it’s hard. I know it sucks. I know what it is like to be awake all night and asleep all day. I know what is like to have drains poked into you and watch bottles fill with liters of fluid. I remember the foul taste of Lactulose and the humiliation of adult diapers. I lost days to encephalopathy and didn’t know if it was day or night. I know the frustration of being a number in a medical maze where you just want to feel like someone will listen to you rather than talk about you like you’re not even there. I know what it’s like to lose your job, your savings, your house and your retirement. I know setbacks and the disappointment of being taken off the list, too sick to survive, and later bouncing back to regain your spot. I get it. I understand.

All that is not even worth comparing to the full life I have now. Transplant is worth it.

I like that I get to talk with so many people and families at the start of their transplant journies. I like that I get to tell my story and encourage people to register to be organ donors (www.donatelife.net). Please, if I can encourage someone you love, try to answer any questions or just be an understanding ear to listen and understand as you vent, don’t hesitate to contact me. Please don’t give up. Keep PUSHing.

I’ll PUSH with you.

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. Romans 8:18

About Scott Linscott

Living life to the fullest, walking in the dust of my Rabbi, creating art through photography and written word, speaking words of hope and encouragement at conferences, workshops, church and civic gatherings.
This entry was posted in chronic illness, depression, End Stage Liver Disease, facing death, Fatty liver, Fatty Liver Disease, Lahey Clinic, Liver disease, NASH, organ donation, Organ transplant, transplant, transplant recovery and tagged , , , , , , , . Bookmark the permalink.

One Response to Folding bikes, sunshine and hope for transplant.

  1. FloridaVet says:

    Wow! There is so much that I can relate to in your blog Scott. I agree with you the even my worst days now are nothing compared to the alternative. You are a very positive and uplifting voice in the transplant community. Thanks for all that you do!!!

What are you thinking? Tell me!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s