I’m more than 8 months post transplant. There have been some very difficult challenges. I’m pretty sure you know that. But what has been the hardest part?
Pain and discomfort? I can’t even describe the pain I felt at times. I remember one time of pain so bad that my personality changed into a loud, demanding, swearing monster. I actually threw things. Yeah, I know. Those of you who know me are having a tough time imagining that. But, I don’t think that has been the hardest part.
Losing income, savings, retirement and house? That was tough. You spend life accumulating and then see it all gone within a year. But, it was just stuff. No, that wasn’t the hardest part.
Change of community? That was certainly one of the most difficult things to go through. My friends are still my friends but it’s different now. We have gone down different paths. Or, perhaps it would be more accurate to say I was swept down a different path. Liver disease was like stepping on an airport people-mover walkway and then wanting to change direction, wanting to go back. No, there is no going back. My community now is largely an online community. I love my online friends but I can’t shoot them with a Nerf gun. Do you understand what I’m trying to say? Hard, but not the hardest.
Losing my perspective? Actually, that was not hard at all. I love the perspective I have now. It’s like I have new eyes and see things like I never saw before.
Changing roles? Yeah, now we’re getting into the tougher stuff. I used to be the bread-winner. I had places to go, people to see. I had projects, appointments and lunch meetings. I couldn’t wait to be able to just stay home. Today I am a home-maker learning how to do things that Robin seemed to do naturally and well for the past 28 years. I plan the menu, I grocery shop, I do laundry (not all of it), I cook, I clean, do the dishes and make the bed. Mondays are for grocery shopping and errands, Tuesdays I wash the floors and make the hardwood shine. Thursdays, I normally spend the afternoon with my dad. I still look for stuff to do instead of doing the stuff I should do. I think we all do that. I try to write a couple hours each day. But, yeah, my life is very different now. I used to feel like a pretty big deal and now I don’t. I know, reality is that I was not a big deal then either, I just felt like I was. Changing roles has been very hard, but not the hardest part. Maybe it’s contributing to the hardest part or making the hardest part harder.
I think the hardest part is that I now see myself as a not contributing much of anything. I am on full disability and worried that I’ll never come off it. Very few liver transplant recipients make it back. It’s a fatigue thing. This is hard to say publicly because I know it sounds whiny and self-important but I promised to write honestly during this journey so I continue to pour out the bad with the good. I used to feel like what I said mattered to people, that I had influence and now, I really don’t. I dislike my own insecurity.
Okay, okay, before you all chime in with how important I am and what a wonderful ministry I have in writing this little blog on the internet, just hear me. It just isn’t the same.
How shallow am I? It makes me angry at myself. I guess I feel like in society, home, and community I don’t have much of a voice anymore. I know it’s probably something deep inside me, some lacking or some injustice pushed on me when I was a child, but I feel like now I am a drain, a throw-away, of little value. Maybe I don’t really deserve to have a voice. Why do I think I do? Is it because I had a voice when I was working and bringing home the bacon? No bacon; no voice? I don’t know. Maybe it’s all just sexest foolishness.
Yeah, you can get your bible out and send me a verse or two telling me where my true value lies. I know that in my head. Somewhere. I just don’t feel it. Or maybe it’s like, “Yay, Jesus loves me. Cool. Jesus hears me. Awesome. But, it’s not enough.” Is that okay to say? I know Jesus is supposed to be all we need and want according to all the Jesus-is-my-boyfriend worship songs we sing. But Adam was hanging with God when God said “it is not good for man to be alone” so, in that sense, God wasn’t enough.
Wait. I know you love me. I get it. Relax, you can’t solve this for me. A thousand emails won’t make what I’m feeling go away. There isn’t a fix outside of me. This is between me and God and maybe a good shrink. 🙂 We’ll work it out.
There’s a lot of stuff on Facebook about lazy good-for-nothings laying around collecting benefits while other people are working their butts off. When I read those, they hurt because I see them as talking about me. People are mad about people like me. They’re irate. I paid in to Social Security for 30+ years. I know I’m just getting the money back that I paid in, but still, it doesn’t feel right to do nothing and get a check for $1100 every month.
Loss is the hardest part of this journey. I feel like the old me was tossed out with my old liver and now I have to get used to my life that came with my new liver. I feel like somewhere inside the old me is still there, still expecting the same voice, still expecting the same level of trust, respect, and value, but the new me, the needy me, apparently doesn’t deserve any of it. Or, at least, I feel like I don’t.
I used to counsel people who had the need to be needed. I tried to get them to see the problems with finding fullfilment in being the rescuer, the go-to-guy, and Mr. Everything. I told them that the danger in living that way was that someday they might no longer be needed and if that ever happened, they would lose their sense of self-worth and identity.
Now I know I was telling the truth. I know I’ll find it again. And if you feel the same way, I pray you’ll find it too.
Drinking from the Same Dipper 
My instinct is to try to make you feel better, but I won’t! 🙂 I did want to ask you, though…how long while you were at Portland as the youth pastor, did God work on your heart that you were to leave? I remember it was quite a long time, maybe years? God was preparing a change, a mission for you, but it took a while. I have a feeling there is a place for your voice to be used. No, probably not with nerf guns and balloon popping games, but somewhere. I think God’s plans for change take some time – probably so our human minds and souls can be aptly prepared for whatever it is (nevermind your body). In the meantime, make those floors sparkle and snuggle with that pup of yours! Love you guys… Midge
I thought this was a very powerful blog. God is working in your life to bring you to the person He wants you to be, and is using you and your journey to affect many others. You speak to people that have transplants, but you also speak to others that share many of the same issues of feelings that you are talking about. Thank you for sharing.
Scott, my man!!! I can feel what you are saying brother! I am coming up on 4 years in March and I still have all the symptoms of fatigue, joint aches, malaise, and sometimes GI issues. I do remember my hopes of being back to my pre-liver failure abilities, but that went south about 6 months after my tx. I have been fortunate because I am also fully disabled with SSDI, and I also have been rated with 100% service connected disability by the VA. So my finances are sufficient to make ends meet and I can get my health care via the VA. You will be able to get Medicare at 24 months post tx. That will help but is still a while off.
It took me quite some time to figure out where I fit in my new role as a disabled person. I couldn’t do anything that could be called significant because of lack of strength, stamina, and fatigue. My illness and tx experience did bring me closer to God than I have ever been before but I still felt I was missing something. I kept praying for God to reveal to me what He wanted me to do. After all He had kept me here for some reason. I did go through some times that I would begin to think that Heaven would have been a better choice than tx. But those were times that I was depressed and tired of how life was going. It seemed to me that after coming through the miracle of receiving life again all of the old problems that were put on hold were still there to deal with. I will have to send you a story about something that happened to me in 2011 and the miracle that God did for me. I will email that to you.
Last August I was asked to help out with a Celebrate Recovery, a 12 step program, at my church. I became a small group leader and eventually I offered to be a backup guitar player for the worship band. Little did I know that I would be playing weekly for the Friday service. I hadn’t picked up my guitar seriously for 20 years. I have gotten a lot more out of doing this than I would have imagined. I get to praise the Lord each week with uplifting contemporary christian music. It gives me a lot of peace in my soul and just feels good to know that I can bring something that can lift others up. I am also leading a weekly men’s step study group, so all of this is keeping me quite busy.
I have also given three lectures at a nursing school to prospective LPN’s about the importance of their job and what a difference they can make in a patients life. I get to educate them about hepatitis C, end stage liver disease, and the feelings that we as patients experience when going through this terrible experience.
Today I have two granddaughters that I didn’t have before my tx, one is 3 1/2 and the other is 4 months old. In your near future, 3-5 years, you can look forward to that too. It is an amazing experience and a true blessing from God!
I would not wish end stage liver disease on anyone even my worst enemy, if I had one, but I would not ask God to take it away either. God brought me back to Him through this and I do not know if I would have come back with out it. I have experienced so many miracles, met so many people though this that it has enhanced my life tremendously. Today I live in the present with the strength that God gives me for each day. I don’t worry about the past because that is already gone and forgiven, and I try not to worry about tomorrow because I know that God will take care of that.
I keep thinking about Matthew 6:25-30 and Jeremiah 29:11, they both give me a lot of peace because of our loving and sufficient Father.
I hear your frustration and I can certainly understand what you are feeling. I just want you to know that it does get better and God does have something for you to do. It is your job to figure that one out. I know that I am preaching to the choir but a little reassurance never hurt anyone.
I got you in my prayers,
Tim
I have the same problem of feeling like I’m not contributing since I can’t work or do chores like I used to. Also, no one knows what it is like to have chronic fatigue, not improved with rest, until it happens to them. These people tend to use tired and fatigue interchangeably, when to me they are two completely different things.
Scott ,
I have been following your posts for a few months now. Monday January 21st is my 1 (one) year anniversary. I received a full liver transplant last year and while searching the web late one night about liver transplant I came across one of your blogs. I am not much of a writer and I often have difficulty expressing myself and my feelings. I free a very strong need to say I can relate so much to how you are feeling. I was very worried about my chances of returning to work. I returned to work part-time in July and was released to full-time in November. I wish I could in some way give you comfort in knowing IT IS POSSIBLE and YOUT CAN DO IT.
Thank you so much Anna. Congrats on being one of the few. I pray you are able to maintain it and that I will achieve it.
I have a strong faith that I will and that you will also. If you ever speak in the Seacoast area, I would love to meet you. I was going to try to go when you mentioned speaking in Raymond. I then looked further and you were speaking at Christ Church in Raymond “Maine”. I live in East Kingston NH. Right near Raymond NH. 🙂
I’ll be praying for you.