Do you know what can change your focus in just a few seconds? I do. This past week in Orlando, Florida, I had a doctor stand by my bedside and tell me that “apart from something major” my life would soon be drawing to a close. She told me that the CAT scan of my lungs and abdomen showed that my liver is “shriveled up and dying fast.” My belly is filling with fluid and compromising my lungs. She told me I should do whatever I could to get on a transplant list immediately. And then, she walked out of my room without a second glance.
I laid there stunned. I have known that I have a condition called Fatty Liver Disease or NASH for several years. I have had annual checkups and scans showing no decline. Now, suddenly since March, my liver has gone downhill rapidly. I don’t know why. All I know is that I now am in serious enough condition that major changes have to happen.
First, I need the rapid decline to slow down or stop to give me enough time to get on the radar screen at the Lahey Clinic in Boston to be assessed for a transplant. If I am a good enough candidate, they will begin monitoring me closely and place me on the national list with approximately 17,000 others awaiting a liver in the United States.
My charismatic friends are claiming my healing. My predestinationist friends are cautiously praying for God’s Will. Honestly, right now, I prefer to stand next to my charismatic friends because their hope and faith give me strength. My other friends are praying cautiously so that God does not disappoint. That’s cool. I understand and have prayed the same way for most of my life. Prayer is good. I’ll take it!
Second, if the Lord grants me the time, we begin looking at the transplant process. I cried many tears on Thursday. My pain mostly came because I was so humbled by the love my family and closest friends started heaping on me. My sisters debated which of them was the best candidate to donate part of their liver. My children searched the internet to see if they could donate. My nieces and nephews called and texted and our best friends were ready to hop a plane to join us in the hospital that night. My oldest sister rushed in ready to give me part of her liver that afternoon if they would do it. All I could do was cry with my wife while seeing and picturing all the grief I was causing the people who love me. I started a letter to my Shara begging her to celebrate her wedding even if I wasn’t there but I couldn’t finish it … I think this might be less painful if I was alone.
I look at the transplant costs ranging from $300,000 to half a million dollars. That money could feed thousands of children, dig numerous safe wells or advance the love of Jesus in numerous communities. Truthfully, though I know the people who love me will disagree, I doubt I am worth the effort or the money. I think there are better investments. I am ready to die … I’m not ready to cause my loved ones so much pain. If I could spend $300,000 to spare their pain, I would. So, I will, if the Lord grants me the time, get on the list.
Third, hope. On Friday morning I spoke with another doctor who told me that while my liver condition requires me to take steps to get a transplant, he sees that I may not need a transplant for a year, 3 years or more. Guess which doctor I am deciding to believe? Yes, Friday’s doctor! I will see my liver doctor this week if he can spare some time to evaluate my life and am hoping he is of the same mind as Friday’s doctor.
What now? What can you do?
1) Pray for time and stability of my liver or a miraculous healing.
2) Pray I get on the national UNOS donor list. There are more than 100,000 people awaiting transplants. My story is just my story. Multiply it by 100,000 to understand how many families are hoping for transplants. Visit http://organdonor.gov/ to get on the national donor list.
3) Get an ORGAN DONOR sticker or designation on your drivers license by visiting the bureau of motor vehicles if your state participates in the registry.
4) Consider being a living donor. Scientific advances in medicine have made it possible for a living donor to give a portion of his liver to a recipient of matching blood type. The living match is more successful and generally allows the donor to fully recuperate in weeks.
5) Pray the Lord will provide our needs. As many of you know, we are planting a church and I have no salary package or benefits. We secured an insurance plan with a $15,000 deductible. I imagine my Orlando hospital bill will be several thousand dollars already. We have no idea how the Lord will provide. We have cut our bills, removed cable and phone but need to sell our house quickly. We are praying that God will supply photo customers and web design jobs to help me contribute.
To live is Christ. To die is gain. Paul said it. Mentally, I know what he meant. Emotionally, I am not yet at the point of embracing it. There are far too many people that I love deeply.
I’m praying for hope. I’m praying that I will go through whatever is ahead determined to glorify God and share His love. My MELD number is currently 17. (15 gets you on the list) But MELD numbers can change quickly. We’re praying that as my pneumonia clears, my MELD will drop too.
God is good regardless of the outcome of my journey.
1 Peter 5:7 Cast all your anxiety on him because he cares for you.
Please join us in praying. It’s time to let everyone of faith know we need their prayers.
White Pine is standing with you in prayer. If we can do anything to be a support to you and your family right now please let me know.
Words to encourage you that have helped me in the dark and confusing times of life:
Isaiah 50:10 Who among you fears the Lord and obeys the word of His servant? Let him who walks in the dark, who has no light, trust in the name of the Lord and rely on his God.
Love in Christ,
hi scott. this is very sad to learn. i have a musician friend suffering from the exact same condition. you r held in prayer brother.
Thanks so much Ron. I hope you are well
Scott, My name is Chris. I work in Boston, live an hour south. I have people. If you make it up here and need anything, ride, bed, church, friends, call me. I have a good friend in NC living with testicular cancer. he just turned 41. on my way to see him for the second time next week. I’m gonna become charismatic too! :).email me for my phone number if you’re interested. Shadow of His Wings Brother, Shadow of His Wings. Chris
Thanks so much, Chris.
I’m not even sure what to say,? I can say, I am thinking of you, and look at aunt Betty, she is a prime example of what faith and possitive thinking can do! I’m thinking, she has the same condition as you.. Talk to her, she has a wonderful outlook on life, very strong lady right there! ,Please don’t think for a minute, that you are Not worth the effort or the money, Because you are, we need people like you on this earth, to continue to do the kind , caring, Life and world changing thnigs you do!! You Truly have a Kind, kind soul……. Anything you need, let me know,,,,,,,, Love ya, Cousin! Hope~
Thanks Hope. ( interesting how Hope is writing to give me hope)
Yes, Aunt Betty is awesome. She has already taught me so much. I want to be like her! She and Aunt Barbara are coming over tomorrow night to love on me a bit.
Each day is a new beginning.
I love you so much and it appears I am not the only one! Your blog is inspiring to many to say the least. I am forwarding it to the teachers who are prayer warriors at my school and going to see my blood type on Thursday for a match.
Love you tons!
I give up! Quit making me cry!
If you have the faith of a mustard seed you can say to this mountain be removed and it will be. I believe and I am claiming your healing whether by God’s miraculous healing or by the instruments of his human servants.
All those wishing to make donations can make them directly to Scott for the time being, but I am in the process of setting up a trust fund account to be used for private and public donations and fundraising by people. Are you running a marathon or a 5k? Do you love to bake? How about a garage sale to clean out your garage? Lets all brainstrom and as we raise funds we can meet Scott’s needs and when God has finished healing him, any leftover funds can go to the liver research center or national organ donor foundation.
Thanks for thinking and praying for my baby brother. Gail Silva
Oh man, here come the tears again. Thank you so much everyone. I am so humbled and undeserving of all the love being heaped on me.
I love you
Scott, I would like to send you a personal e-mail. How may I go about doing that. Your posts truly are encouraging to me. I don’t know you personally but I am praying for you.
I’m praying charismatically!!!! Where/how do I find out if I can donate a part of my liver to you?
I’m in your corner, Scott! My prayers are with you and yours.
Dear Scott, You have done so much for so many and we thank the Lord for you. If everybody just sends some money to the cause it wouldn’t be a burden for any one person! How do we donate to the cause? We love you, Patty
Thinking about the woman from Matthew 9 and how Christ used her very faith to encourage her. Praying that He is so near to you today that you can reach out to touch His cloak and ‘be made well’. Thinking and praying fervently for you and yours…
Thanks Steph. Love you guys so much. Hug those girls for me.
Life is strange . God is good!
Dear Scott, Robin and family,
I am stunned and saddened by your news (AND the way the first doctor treated you!!) Please know that I am praying right now for your healing. May our precious LORD hold you all in His arms as you walk through all this medical stuff. If it is His will that you be healed through a transplant, then I am praying for a donor. Blessings and love from the whole family.
Thank you so much, Dale.
Dude, how can I send you money.
531 Allen Ave
Portland, me 04103
I am so humbled by this. Thank you.
You are in my prayers man! I’m on the charismatic side 🙂
O, Scottio! I am shocked and shaken ~ but I know that God is good. I am inspired by your faith and commitment to Him and His kingdom; and your love and devotion to your family. I love you. I will surely be praying daily for you and your family. God is so faithful to us and wants to heal us and protect us ~ and He is able.
Posted your blog on my FB page requesting prayers. God bless you and be with you. Your words have been an encouragement to me. I too am in the thick of a health battle and can truly empathize with you. May God bring us through this according to His Will.
How does someone become a live donor?
What blood type is compatible?
I’m willing to give…