Side effects, milestones, purpose, road trip and answered prayer…

Side EffectsI’ve just hit a milestone. Most of you won’t think it’s a big deal, but I do. My transplant docs just reduced the daily dose of my anti-rejection medicine from 8 milligrams to 6. YAHOO!

Why am i so thankful? Well, first, it means I am nearing the one year mark and have had zero rejection scares. That is a big deal. Apart from an E-coli infection early on, I have stayed out of the hospital. Second, the side-effects I experience from my medication should be less bothersome on a lower dose.

I always used to laugh at the televisions commercials that list all the side effects of the drugs they are pushing. After hearing them I would ask, “Who the heck would take that?” I mean, seriously, the “may cause” section recited in high speed in that low-toned voice can be downright scary! I can handle a little rapid heartbeat and dry mouth warnings but anal leakage and even death? Holy moly! Who rushes to the doctor for those?

But now I take what I call my “keep me alive medicine” with its long list of possible side effects. My phone alarm  makes a doorbell sound every day at 8:30 AM and 8:30 PM reminding me to go into the bathroom to dig out my pill organizer. Until yesterday, 4 of the pills taken every 12 hours were Prograf, my anti-rejection medicine. But now, I only take 3 every 12 hours. That means my docs are less worried about rejection.

Rejection fears never completely go away. I will take Prograf, or some form of anti-rejection medicine, for the rest of my life. It tricks my body into being less vigilant in attacking foreign things. That’s good because my liver is not my own. It’s a foreigner in my body. But, it’s also bad because viruses and bugs are foreign bodies too. I don’t fight them off like other people do. The fact that my docs are comfortable reducing my medicine means they are confident that my body is accepting my new liver well. That’s really good news!

Prograf has a long list of side-effects. Thankfully, the worst ones haven’t been a problem for me. It just gives me a near-constant headache, shaky hands and problems sleeping. I wake up about every two hours. But  now I can take 2 milligrams less. I’m hoping it will make a big difference.

I am very thankful that we have medicines that make rejection much less common than it used to be.  It is amazing to me to see how far medicine has progressed in my lifetime. Liver transplants started gaining ground in the 1980’s and became more and more successful each year. The first “successful” liver transplant was in 1967 and the recipient only lived for a year. Back then, that was success! The first successful living-donor liver transplant was in November of 1989, only 23 years ago. Lahey Hospital outside of Boston was the first New England Hospital to do living donor transplants in 1999, just 13 years ago. Today, it is the largest Living Donor to Adult Recipient transplant center in the United States having completed more than 200 such surgeries to date. That makes me thankful that I live in New England!

Less than 5% of the liver transplants performed in the United States each year are living donor transplants. Josh’s lying on that surgeon’s table was not a common or easy thing without risk. There were only 246 living liver donor transplants in the entire United States in 2012. I am so thankful to have been one of them. In comparison, 40% of kidney transplants are provided by living donors; 5618 in 2012.

The more I learn about statistics and regions and centers and transplants, the more I am convinced that my God has had his hand on me throughout this whole journey. I see how He has prepared me for a new work and a new ministry.

I thank Him for my son Josh matching as my living donor so that I did not have to wait for a cadaver donor. As sick as I was, I would have had to have been much worse to be at the top of the list in New England to get a cadaver liver.  I thank God that I live in New England and was able to have my living donor transplant done by the team with the most experience in the United States.

I’ve learned so much about liver disease, transplants, complications, medicines and organ donation. I’ve now know so many families who have faced or are facing transplant. I know people who have gone through rejection, infection and alternative treatments. I know caregivers, spouses, adults and children who have been impacted. I know recent transplant recipients and people who had their transplants 5, 10, 20 and 25 years ago.

What that means is that I’ve been equipped to do what now gives me great joy. I talk to people about all sorts or things. I get to speak to groups about having hope during chronic illness. I get to encourage people to become organ donors. I get to talk with people who are nervous or scared about transplant and people who are recovering. I get to share our story of God’s faithfulness.

I’m excited to be heading to Florida on Tuesday with my dad. While we are there staying with my sister, I am scheduled to speak to a group of Rotarians and a church group. I will also meet with a gentleman who is filming a documentary and wants to tell our story to encourage organ donation. I am also scheduled to have lunch with several close friends whom I have never met in person but have shared so much with online in our transplant support group. I’m looking forward to a great time.

One cool coincidence is that the Rotarians meet at the very same hospital I was admitted to in May of 2011 where I learned of my need for a liver transplant! Now, two years later I am returning to that very same hospital to tell my story and encourage them to register as organ donors and promote organ donation in other clubs. That’s so cool.

I remember telling my deacon friends from First Baptist Church in Portland my greatest desire when they came to pray for me months before transplant. When they asked what I wanted them to pray, I asked that I would be able to bring glory to God through this whole situation no matter the outcome. He is allowing me to do just that.

Pulpit supply, clubs, schools, church groups, bridge clubs … whatever the event, I count it an honor to be able to tell my story to encourage others, give hope, inspire or educate. I’m closing in on my one year anniversary and feel better than I have in more than a decade. It’s awesome!

I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.  I can do all this through him who gives me strength. Phil. 4:12-13

Some helpful liver transplant information links:

Selecting a Transplant Center

Liver Transplant Information from Mayo Clinic

Preparing for a Liver Transplant

OPTN data and reports by state and region

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 wherever and whenever the opportunity arises.
This entry was posted in Liver disease and tagged , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

1 Response to Side effects, milestones, purpose, road trip and answered prayer…

  1. Anonymous says:

    I Continue to be Inspired as you provide me hope through my
    illness. Your positive attitude and Love for God, Family and
    Friends through out it all is a light and example for many who have
    to walk through many Dark hours and Days. Thank you!

What are you thinking? Tell me!

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

You are commenting using your 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 )

Connecting to %s