Breasts, boobs, ta-tas, the girls, honkers, headlights …

Posted on May 31, 2013 by
My person said if I get $1000 in sponsors he'll take me to Magic Kingdom!

My person said if I get $1000 in sponsors he’ll take me to Magic Kingdom!

Why would I write a blog post like this? Am I out of my mind? I mean, some people are offended, some are mad, some are laughing and some are now worried about my eternal security, all because of breasts.

But, no matter what your mood, you decided to open this email or click the link and you are reading. That was my main goal because, as we Mainers say, this is “wicked” important.

Most of the population thinks about boobs several times a day, right? Men and women notice boobs everywhere. Advertisers use boobs to sell their products and clothing manufacturers design clothes to show off boobs. Now, compare that to livers. What???

Livers get no love. Boobs get pro athletes to wear pink shoes on national television. What do livers get? They get no attention. It’s sad, really. You won’t ever hear, “Woah, nice liver you got there!” coming from a construction site.

I get it. I know why why pink shirts and ribbons are common. Breast cancer is a huge, well-funded concern and it should be. Hey, I’m a fan of breasts. I’ve got nothing against them and I hate breast cancer. I hate ALL cancer!  I’m just asking that we show the liver a little love.

I’m hoping to convince you to root for the underdog for just one day. Help the runt of the litter. Be the type of person who gives a kid on a swing a push to get him started.  Poor livers just hang out filtering every drop of blood getting no credit at all. No one ever thinks of them … until they stop working.

Sunday morning I’ll be walking 3.5 miles in the Portland Liver Life Walk to benefit the American Liver Foundation. It’s wicked important. Last June 2 I could barely walk 350 feet! Now that a liver transplant saved my life and I’m doing great, livers are pretty important to me.

My liver is a little upset at the moment because even though I’ve let my 1400 friends on Facebook in on it, asking them to help, and even though I have tweeted to the universe and sent out a blog post to my 5000 subscribers, only 3 people have chipped in to help us meet our fundraising goal. Uh huh, that’s right, three. I’m one of the three.

My liver knows that if he were a set of boobs he would get more attention. I’ve been trying to reason with him and explain why more people support breasts but he doesn’t get it. He feels left out and underappreciated.

He asked me to take a picture of him holding a sign that says, “My person said if I get $1000 in sponsors he’ll take me to Magic Kingdom.” I think he got the idea from Facebook kids wanting puppies for a million “likes.” I told him I don’t like those things because they make me feel manipulated. He insisted though. I don’t ever want to have an angry liver on my hands again so I did it.

I’ve got less than 48 hours to reach my goal of $1000. My liver and I are begging you to help. Plus, Josh is getting married in Florida on July 28 so I will actually be able to take my liver to Magic Kingdom if his sad little sign works.

Liver research saved my life. Please click the link below and support Robin and I in the walk by giving a donation of $5, $10, $15, $5,000,000 or whatever you want to give. Your gift will put a smile on my liver’s lobe. (He only has one lobe. It’s a transplant thing. Shhh… he’s sensitive about it.)

Click here to give a gift.

PS – We’d LOVE to have you walk with us! Registration starts at 9:00 am Sunday at Payson Park, in Portland. The Boulevard is closed to car traffic so you’ll have to enter the park on Ocean Avenue

**************************************************
Are you an organ donor? Please register now at http://www.DonateLife.net

Posted in Liver disease | Tagged , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

My therapy seems to be going well.

Posted on May 25, 2013 by

writing therapy  Back in February I told you I was writing a book about my tranplant experience. The project is going well. I hit 145 pages today. Actually, I’m starting to worry that it will make War and Peace look like a short story.

I’ve made a few observations in my writing process to this point:

  1. The quality of my blog writing went downhill the more sick I got. It’s tough for me to reread my blog because it is showing me how my brain function was impaired by liver disease. I mean, I knew that the hepatic encephalopathy made me snippy with people. I knew that I suddenly sucked at Words with Friends and that I couldn’t remember my birthdate or phone number but I am just now realizing how much it effected my reasoning abilities. Robin is telling me to include those blog entries, as is, to show my decline but I’m struggling with that because they make me look stupid. I guess it’s okay to be stupid if you don’t know you are. It didn’t bother me then but it bothers me now.
  2. You loyal readers are amazing people. How the heck did you hang with me when my writing got so bad? Didn’t it drive you crazy? The only thing I can figure is that you felt the same way as my reader friend Wendy Onsted did when she later told me that she knew how bad things were by how bad my writing got. She said I made her worry with weak writing. My manuscript uses selected blog posts with additional reflections and support that I am writing now.  I’m having a tough time finding acceptable posts after January of 2012.
  3. Some memories are painful. I’m not enjoying revisiting the painful memories. I feel like I have PTSD or something. Last night I woke up drenched in sweat with my heart pounding. I was having a dream where a nurse was injecting a honey-colored liquid directly into an IV port running into my hand. I felt it burning going into my veins and was trying to beg her to stop when another nurse forcefully held a plastic mask over my mouth and nose. I couldn’t breathe! I couldn’t move my arms, my head or any part of my body. I tried yelling but nothing would come out. I woke and sat up terrified. I haven’t had nightmares in at least 7 months. I used to dream that I woke up during the transplant surgery and could feel the surgeons cutting me but could not move or scream. I just had to lay there while I felt every cut and stitch. I think re-reading my blog is bringing fears and feelings to the surface

Today, I hit the point in my book where I introduced Josh’s blog. (Josh is my son, the live liver donor who saved my life.) I remember reading it before my transplant. It made me cry but also helped me accept his decision to go through with the surgery. Today I read it with a clear head and it hit me hard. This gift that my son gave me and the way he did it was nothing short of heroic. His reasoning, his writing, his faith are inspiring. Today, reading his thoughts again, I came to appreciate my Joshua, the man who once was my toe-headed little “Joshy,” as a truly incredible young man. I could not possibly be more proud of him. I could not possibly be more thankful.

Writing this book has been cathartic. I’ve been learning and growing. Truthfully, I don’t think I realized just how sick I was while I was sick. Even when I nearly died in March of 2012, I think my swollen brain kept me from fully comprehending how bad things were. I’m glad it did.

When you’ve been sick for a length of time you begin to forget what it feels like to be healthy. I looked at some pictures today and saw the 163 pound me after transplant. I now know why people who saw me and told me how great I looked were not all that convincing. It was like what you do when you see a picture of a butt-ugly newborn and say, “Aw, he’s beautiful.” My arms and legs were pencil thin and my face was drawn. My mom would say that I “looked like death warmed over.”

This writing process is allowing me to get emotionally healthy and deal with things I’ve not dealt with to this point. Even if it never sells a single copy it will have been worth the effort for that reason alone. Plus, it’s a heck of a lot cheaper than therapy.  If you’re stuck, I recommend you start typing your story or the story of your pain or sickness. It might help you too.

God, your God, will restore everything you lost; he’ll have compassion on you; he’ll come back and pick up the pieces from all the places where you were scattered. Dt. 30:3 MSG

Posted in Liver disease | Tagged , , , , , , , , , , , , , , , | 3 Comments

How is your eyesight? Your hearing? What do you see? What do you hear?

Posted on May 20, 2013 by

Bird NerdHave you ever sat and listened to the birds? I mean, really listened, not just, “woah, listen to those birds.” This afternoon I sat and listened. That’s not like me. Or, at least, it’s not like the me I used to be.

I used to make fun of bird nerds. Okay, honestly, I still think bird nerds are pretty funny. I’m talking about the people who head out into the woods with binoculars around their necks, wearing special birding clothes and carrying bird guide books in their pockets. They subscribe to text message “bird alerts” like I subscribe to baseball scores. “Look Helen! It’s a Fork-tailed Flycatcher!” Bird nerds are peculiar people.

I’m not a bird nerd but today I sat in the adirondack chairs on my front lawn trying to write while tilting my laptop trying to see through the glare. Finally I gave up and set my computer aside waiting for the next cloud bank. It was then that I noticed how noisy my neighborhood is. We’ve got some loud and animated birds around here.

I heard this bird talking back and forth from one corner to the other. One would call and then a few seconds later the answer would come. It went on back and forth. Added to it was this call and this call. It was downright loud but sort of like a jazz symphony with the familiar chickadee added to the bright yellow finches that come to our tree in groups.

I know, most of you reading this didn’t click the links or maybe clicked one and said, “Got it. Bird.” I totally get that because that was me before my transplant. I know we’re supposed to stop and smell the roses but I hardly ever did. Hey, we’re all busy, right?

But I also know that some of you are probably “bird nerds” and recognized those calls immediately. Go, you!

But for me, it was the first time I sat and truly listened to the symphony. I started recognizing patterns in their music. I began picking out calls and listening for responses. I must have sat and listened for at least a half an hour. It feels weird even admitting that. Everything in the old me wants to scream, “what an incredibly boring waste of time!” But, the post-transplant me liked it a lot and is embarrased to admit I’ve gone through 50 years without truly appreciating God’s symphony.

My transplant friends tell me that what I am experiencing is common. I remember my pal Bill telling me I would smell smells I had never smelled and see things I never noticed before my transplant. I listened politely and said, “Uh huh.” I didn’t believe him. Bill went through his transplant a year before me and he kept me going and looking forward while I waited for mine.

While I sat listening on my lawn, my neighbor came out and sat in the chair next to me. She told me that her son had an apparent heart attack this morning and is in a hospital in Georgia. We talked about how tough it is for a mom to be so far away when her child is in crisis. She asked me if I could pray so I did, right there, while God’s symphony surrounded us.

The old me wouldn’t have been out there listening. I was always on the way to the next thing. The old me didn’t stop and smell the roses and wouldn’t have been there for my neighbor. The old me was so busy attending church “love your neighbor” talks and classes that I had little time left to love my neighbor.

Bill was right. I see things differently now. I hear things, notice things and appreciate the common beauties of life in a much different way.  I very rarely rush now. But what I appreciate most? I think I see people differently now. Somehow I feel like I have more of a connection, more compassion and recognize the image of my Creator in them much better than I ever did before. I like that.

I remember singing Brandon Heath’s song Give Me Your Eyes as a prayer years before my transplant.

All those people goin’ somewhere
Why have I never cared?
Give me Your eyes for just one second
Give me Your eyes so I can see
Everything that I keep missing
Give me Your love for humanity

It seems to me that my God is answering that prayer.

Life is a symphony. Slow down. Don’t miss it.

“Here’s what I want you to do: Find a quiet, secluded place so you won’t be tempted to role-play before God. Just be there as simply and honestly as you can manage. The focus will shift from you to God, and you will begin to sense his grace.” Matthew 6:6 –  The Message

Posted in change, Find God, Liver disease, relationship, religion, transplant, transplant recovery | Tagged , , , , , , , , , , , , , , , , , , | Leave a comment

Um, I think you forgot an important birthday …

Posted on May 18, 2013 by

liver cowJune 2 is going to be a big day for me. First, it will be our 29th wedding anniversary. Second, I’ll be walking 3.5 miles in the Liver Life Walk to benefit the American Liver Foundation.

Wait! Before you’re out quicker than a one-legged man in a butt kicking contest, please read at least the next paragraph.

I’m hoping you might root for the underdog, help the runt of the litter or be the type of person who gives a kid on a swing a push to get started. The reality is that the liver never gets any attention. Poor livers just hang out filtering every drop of blood getting no credit at all. No one ever thinks of them … until they stop. Compare that to boobs.

Most of the population thinks about boobs several times a day. Men and women notice boobs everywhere. Advertisers use boobs to sell their products and clothing manufacturers design clothes to show off boobs. None of that is true of livers.

Breast cancer is a huge, well-funded concern, as it should be. Hey, I’m a fan of breasts. I’ve got nothing against them and I hate breast cancer. I hate ALL cancer! My oldest son is a direct beneficiary of cancer research funding since he is doing research at Sloan Kettering.. I’m not say we should fund cancer research less. I’m just asking if we could show the liver a little more love?

So, yeah, I’m doing another cause walk. I know, I know, there are walks for everything. I’ve seen fundraising walks for pets, walks for colons, walks for homeless people, CF, MS, ALS and ADHD. I’ve even seen a walk raising money for air conditioning units. You would think with all the walks we do that we’d be a lot skinnier as a nation, but I digress.

But I want to ask you to show some love for my liver. C’mon now. He’s a cute organ who has grown big and strong. He just had his one-year-old birthday. I wish I could send you a picture of him but, unlike boobs, he’s pretty camera shy.

You know me. You know that if I didn’t get a liver transplant last year I wouldn’t be here today. I’d be pushing up daisies. You might even know that I was one of only 246 Americans last year to get a living donor transplant. But, did you know that if the ALF didn’t exist and wasn’t able to fund the research it does that I would not have this anniversary with my wife?

I’ve got some big hopes for liver research. I’d like to see advances in surgical techniques. Did you know researchers are working on splitting donor livers in half to save twice as many lives? Never thought about it? It’s my life now. There’s lots of promising research needing funding. Personally, I’m hoping for better anti-rejection drugs with less side effects.

So, here’s “the ask,” direct and clear. Will you click the link below and support Robin and I in the walk by giving a donation of $25 or more? Honestly, my liver was a little upset that you didn’t send a gift, or even a card for his birthday.  You forgot. Your gift would totally make it up to him and put a smile on his lobe. (He only has one lobe. Shhh… he’s sensitive about it.)

Click here to give a gift.

**************************************************
Are you an organ donor? Please register now at http://www.DonateLife.net

 

 

Posted in Liver disease | Tagged , , , , , , , , , , , , , , , | 2 Comments

I’ve got the green light … Now what?

Posted on May 11, 2013 by

New startA week ago Josh and I walked through the doors at Lahey Hospital and headed to the transplant wing. When we walk around Lahey we do it like we built the place. We know where everything is because we’ve spent so much time there.

We walked into the transplant wing reception area to smiles and welcoming hellos. We saw Evelyn and then Maria came rushing out to give us each a hug and a kiss. We chatted like family with Maria asking Josh about his upcoming wedding and medical school.

I am always amazed at how unhospitalish it feels. I know that’s not a word but I think it should be. I think you should be able to look up “unhospitalish” on Wikipedea and see a picture of my Lahey family there with a description.

Next we took a trip to the blood lab where I had my blood drawn by my favorite phlebotomist, Kimmy. I always joke with her and call her “Hello Kitty” because of her pins, bracelets and even a Hello Kitty top she has worn at past appointments.  I also said hello to George, another phlebotomist I got to know when hospitalized after my transplant. Even the fact that I know the names of my phlebotomists is different. Do you know yours? Most people don’t,w but we transplant recipients often do.

A CT scan showed Josh’s fully regenerated liver and then we met with our docs for our one-year check. Dr. Pompaselli was out for his birthday (I left him a card) so I met with Dr. Lewis and my favorite RN, Pauline. He told me my numbers were perfect and “rock solid.” As always, he took his time answering my questions in a way that made sense.

And then he looked at Pauline and said, “Should we keep dragging this guy down here so often?” Pauline laughed and looked at me and said, “He’s doing great. I don’t know.”

Doc Lewis looked at me and gave me the green light. “I don’t see any reason we need to see you for another six months. And you don’t have to go get labs every month anymore either. Let’s say every other month.”

Those of you reading this who are transplant recipients know what a big deal this is. Some of you have told me you’re a little envious but happy for me. One of my friends even told me she is 4 and a half years out and still has to check in every three months and get to the blood lab monthly. I’m pumped!

Yeah, sure, Dr. Lewis gave me the cautions I will hear for the rest of my life and made me promise to call quick with any new pains, issues or fevers. We talked about the sun and my increased odds of skin cancer and we talked about hand sanitizing and being careful. I heard all that and will certainly follow his counsel but what I heard most was “rock solid” and “six months.”

Josh left his appointment with rave reviews as well. He’s perfect too. I am so thankful.

I have a little girl who prays for me every night. Her name is Coco. Her mom tells me that every night she remembers, “Lord, please heal Scott.”

Well Coco, your prayers have been answered. I am rock solid and riding my bike 40 plus miles a week. My body is doing great with my new liver and I feel awesome most of the time. The Lord has made it possible for me to thrive again and has provided the medicines that keep my new liver happy. Thank you for praying for me, Coco.

I’ve got the green light and am charging forward praying that I will be able to return to the workforce. I’m praying that the side effects from my medicines will continue to become less and less of an issue and allow me to work full time. I’m praying that the little aches and pains from lying on a surgeon’s table for 6-8 hours with my ribs compressed and my arms secured above my head will soon be a thing of the past. I’m praying that my upper body strength keeps building.

I can’t believe that today, after 2 years, I am again writing with excitement about what God has in store. Pinch me! Something is stirring within me and it is a familiar feeling. I can feel my God starting to put together new directions, opportunities and possibilities as he lifts limits.

I’ve got some ideas of what might be next but nothing is clear yet. Will you pray that things become more clear?

Some Possibilities:

1) A new ministry in the transplant community? As Robin and I navigated these transplant waters we never came across a coordinated Christian ministry to offer support, resources, counsel or prayer. I am wondering if the Lord wants me to build something new to meet this need. I know we are now uniquely qualified.

2) Church planting? The vision I had before transplant is still intact and our hearts still are heavy to connect with people not attracted by the average church formula.

3) The secular workforce? I intend to continue with my photography (
http://linscottphoto.com
) but we Maine photographers struggle to make a living November through April. Maybe we’re supposed to stay the course and keep serving in the local church for awhile? Please think of me the next time you need a photographer? Portraits, weddings, etc…

I will keep writing my book and blog but I sense there is more right around the corner. I’d love to hear your thoughts and ideas.

Trust God from the bottom of your heart;
don’t try to figure out everything on your own.
Listen for God’s voice in everything you do, everywhere you go;
he’s the one who will keep you on track.
Don’t assume that you know it all.
Run to God! Run from evil!
Your body will glow with health,
your very bones will vibrate with life!
Honor God with everything you own;
give him the first and the best…
Proverbs 3

 

Posted in change, Christianity, hope, Lahey Clinic, Liver disease, pastor, transplant, transplant recovery | Tagged , , , , , , , , , , , , , , , , , , , , | 3 Comments

You know how fat people are…

Posted on May 9, 2013 by

You know how fat people are….

My friend Jim sums up some of my feelings perfectly. I think you’ll enjoy his blog.

Posted in Liver disease | 1 Comment

I can’t breathe …

Posted on May 5, 2013 by

There’s a 50 pound bag of cement sitting on my chest. No, wait. There are two. They are so heavy that I can barely breathe. Crushing. Suffocating. But, the strange thing is that even though I feel like I have weight on me, there’s nothing there. It’s emotional weight.

Yesterday I got news of a liver transplant friend who passed away. You would think I’d get use to it, right? Eighteen people die every day waiting for transplants. That’s 6500 people a year. It’s just a part of the world I live in now, right? But I can’t get used to it. I can’t.

Maybe it’s because I saw the pain in my wife’s eyes while she watched me dying. Maybe the memory of my mom’s tears and the look on her face when she looked at me will never fade. I hated seeing them hurting so … because of me. I bet it is the same regardless of the fight: liver disease, cancer, ALS, COPD.

The first sack of cement hit me with yesterday’s news that Jessi Hillborn died. Jessi was an young wife and mother with an infectious positive outlook and welcoming smile. Jessi was a fighter who already got her transplant just a handful of weeks ago. She did so well she was released from the hospital just 4 days later! She started asking our support group about the normal aches and pains following surgery but as she did she always laughed and joked. But then fevers started coming. Fevers are not good for transplant recipients. We told her to check with her team.

Jessi posted that she was admitted to the hospital with GVHD (Graft vs Host Disease). GVHD is when the cells of the transplanted liver attack the host. Even though Jessi’s posts were positive I knew she was in grave danger.  Upwards of 75% never leave the hospital with a diagnosis of GVHD. I prayed and hoped as best I could. If anyone could beat it it would have to be this energetic, warrior mom. I was wrong. The news of her death and the mourning of her family now sits on my chest.

And then, this afternoon while I was watching my Red Sox battle the Rangers, I took out my phone to glance at Facebook and read a post that a young husband should never have to write.

To all my friends and family. This morning, Rachelle had a major bleed out. The cause unknown. Her heart stopped for a bit, but they got her working again. However, given her volatile state, they would never determine that she would be strong enough to survive a transplant. As her husband, this duty came to be the hardest choice I have ever had to make in my life. So, on May 5th, I had to let her suffering end and let her go. To all of you who were blessed to know her in life, thank you for sharing our moments of joy and sadness. But it is over now. Rachelle Passmore, my wife, is dead. – Alan

Rachelle and Alan

Rachelle and Alan

I couldn’t breathe. The second bag of emotional cement landed on top of Jessi’s. Rachelle died waiting for a liver. Waiting. She died while hundreds of life-saving, usable organs were tragically buried in the ground today. Hundreds yesterday. Hundreds the day before.

We’re not talking about a terminal situation here. Rachelle did not have to die. If she had received a liver she might be living and enjoying life soon just like I do today. I think wasting usable organs is like having cancer and watching the cure washed down the drain. Could you handle that if a loved one was dying of cancer while their chance at life was just thrown away over and over again?

These two bags of emotional cement will sit here for awhile even though I never met Rachelle or Jessi. My disease connects me to them and to their families. Either of their stories could have been my story. Thankfully Jessi’s story is no longer common in the transplant world. Sadly, Rachelle’s is.

What can I say to get you to register as an organ donor? What can I do to persuade you to join our cause of registering so many donors that we will end the wait here in the United States?

Every person I convince to take 5-10 minutes to register takes weight of my chest.

Please? Now?
http://www.donatelife.net 

Posted in chronic illness, End Stage Liver Disease, Fatty liver, Fatty Liver Disease, Liver disease, liver keys, NASH, organ donation, Organ transplant, transplant | Tagged , , , , , , , , , , , , , , , | 29 Comments