Update: what’s my current status

I’ve had people asking what my status is. Am I “on the list” for a transplant or not? It’s all pretty confusing but I’ll try my best to bring you up to speed.

Each time my MELD score climbs above 15, I prepare to go on the list but transplants normally happen at Lahey from 20-23. A MELD score is a formula based on blood tests.

In Florida I was 19. Then, mid summer, I dropped to 11. Then, most-recently I was 17. Now? I don’t know yet. I may know Wednesday when I meet with my local liver doc.. Each infection and complication drives it up.

Right now – portal vein hypertension is causing ascites fluid. They want to discuss a couple “procedures.” That word makes me uneasy.

Pleural effusions, water around the lung, take my energy. Right now I am operating with one good lung, with small pneumonia spot, and one lung at 40-50%. This is what limits my mobility. I have had two drains of 1400 ml each. Fluid keeps returning for some reason. They have me on some powerful diuretics to flush out the fluid. It looks to be working but they have to watch my potassium and kidneys carefully. My cough has subsided and my energy level is increasing.

Muscle wasting is concern. I am now down to about 208 pounds with belly fluid too. I now have two alien-like hernia bulges near my navel. I guess it’s common with ascites. We’ll see what the doc says on Wednesday. I am trying to get out daily for some walking.

My pancreatic issues appear to be resolved. I have not had that pain since they put the bile duct drain in several weeks ago. That’s good!!!

Lots of liver patients complain about pain at the bottom of the ribs on the right. Most docs say pain there is unlikely. We, however, wince and reach for pain meds. It feels like a stabbing pain that comes on suddenly.

Emotionally? Ups and downs. Depression. Fatigue. Faith. Doubts. I’m a mess. Faithful blog readers know that.

Needs: the Lord has given me lots of photo business this summer so the mortgage is paid up through October. But I have been unable to shoot for a month and have lost some big jobs. We’re falling behind on utilities and needing oil and heating pellets. We’ve had no movement on our house even at $224k. Groceries are good. The Lord continues to provide Shaws or Hannaford gift cards just when we’re starting to wonder.

God has blessed us greatly. I now have a sweet mobility scooter gift that has given me independence. My sis got me a recliner so I can nap without drowning in fluid. My smaller waistline and scrawny arms are being clothed with thrift store finds and hand-me-downs. Cards, emails and visits come daily to encourage me. I have been accepted by the www.NTAFund.org to manage liver transplant donations and fund raising in a manner above reproach. MMC forgave a $1900 hospital bill. Wow!

And I have people PUSHing for me by taking my liver transplant bracelets to their churches, youth groups and businesses. That is such a blessing to me! I never imagined that one day there might be tables in church lobbies, community fairs and events with people helping to fund my transplant. I am so blessed. (for info email Sisahgail@gmail.com to become a PUSHer)

Please pray that we sell this house soon. We’d like to find a ranch or house with a bedroom on the first floor so I can navigate more easily after my transplant until I can handle stairs.

So there ya have it. I am so blessed to have so many praying! God is our strength.

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 Christianity, chronic illness, discouragement, facing death, Fatty liver, Fatty Liver Disease, Find God, handicapped, Lahey Clinic, Liver disease, liver keys, NASH, organ donation, Organ transplant, transplant. Bookmark the permalink.

3 Responses to Update: what’s my current status

  1. Rick Messana says:

    You are in my prayers always brother. Stay faithful, keep hopeful and lean not on your own understanding.

  2. Scott,

    We continue to pray for you. A current verse I repeat to God frequently nowadays for you is 1 John 3:16-17
    16 This is how we know what love is:
    Jesus Christ laid down his life for us.
    And we ought to lay down our lives for our brothers and sisters.
    17 If anyone has material possessions
    and sees a brother or sister in need but has no pity on them,
    how can the love of God be in that person?

    I have been praying verse 17 for you for a long time, but lately, verse 16 is on my heart. I pray that someone with a matching liver will lay down his/her life for you and be available for a live donation.

    What blood type are you? Should I be praying for a A+, an AB-, an O-, or a B+?

    Who is willing to lay down his/her life for our brother, Scott? Who will enable the person willing to do so by supporting him/her financially, physically, emotionally, and spiritually?

    God, move the right person to live out 1 John 3:16. And prepare Scott to be ready just in time.

    Amen

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