5 Years.

5 years seems so short sometimes.  Tiny babies grow to age 5 right before your eyes.  My dog is 11, and that happened out of no where! Has it really been 2 years since I’ve been out of the country?  My parent’s house is 19 years old? I can’t even believe Scott and I have been married for almost 6 months (what?!) Everything feels like it just happened.

But this week, time has stood still; it has felt like something so long, something so very substantial.

Monday was my 5 year anniversary of receiving my new liver.  I think back to what the past five years have held, and they have been full of so much.  I recently heard from someone that their mother had the disease I had (PSC) and it turned into cancer, which eventually took her life.  That’s the road I was on.  I was so close, and I barely even knew it.  I will be thankful for my donor every single moment of every single day because he quite literally saved my life.  I don’t know him, or really anything much about him, but I feel for his family who lost a son.  Perhaps a brother, a grandson, and a nephew. A friend, a classmate.  It is hard to celebrate knowing you’re doing it while another family is still grieving, and will grieve beyond the length of time.

5th transplantversary

But we do celebrate, even though sometimes bittersweet, we were able to celebrate on Monday night.  My husband surprised me with a big cookie cake that said “Happy Transplant-versary” on it, and we enjoyed dinner together and celebrated the life of a guy who was just turning a few years old the night I got “the call” for my transplant.  We were out for a birthday dinner to celebrate his sweet life, and I had no idea that it would be the last place I’d go, the last thing I’d do, until my phone would wake me up just past midnight on August 31 with the message that my organ was en route to the Cleveland Clinic and to get there as soon as possible.  I jumped into the shower, found some comfy clothes, and loaded last minute-items into my bag, knowing I’d be in the hospital for awhile.  Confident, but unsure of exactly what to expect, my parents drove me to waiting gifted surgeons, doctors, and nurses.

In a matter of hours, I went through something that changed my life completely.  A liver was a good thing, yes, but we would have a waiting period to see how well my body adjusted to it.  There was also the recovery period that the nurses told me would take about a year.  (I never did believe them until 5 months later when I tried to resume my bachelors degree in nursing.  I quickly believed them and put my life back on hold.)  My immune system would be affected forever.  I would start a new medication for life.  I would have lots of return appointments, CT scans, and lab work.  I don’t know if I’d be up for recovery again, and it did add a good amount of wear to my body, but as crazy as it sounds, it’s been worth it.

The hardest time in my life was worth seeing my sister graduate with her MBA.  It was worth being by my dad’s side after a bad accident landed him in the ICU.  It was worth me meeting Scott, my now-husband. It was worth going to Ireland with my college’s nursing school, and it was worth going to Switzerland and revisiting France with my college’s public health program.  It was worth all of the new people I’ve met.  It was worth being with Haylie as she’s grown.  It was worth being immunocompromised and getting sick more often than usual.  It was worth getting to plan my wedding with my super gifted mom.  It was worth it to be welcomed into Scott’s wonderful family.  It was worth it to get to live in my own house.  And it was worth finally being able to complete my baccalaureate degree after 9 years of fighting against my body.

Each day, I’m cautious about not catching any illnesses, and I need to get my sleep quota, and I still have psoriatic arthritis and get allergy shots and go to several doctors…  That’s fine though.  It may sound like a lot to you, but I’m used to it.  This has been my life for 23 years as I was diagnosed as a small girl. But I’m thankful that the Lord has allowed me to accept this as my life and that I’ve been able to make the best of it.  None of these days were guaranteed to me, so I can only see each new day as a gift.  Because if it wasn’t for my new liver, my days would have been limited.  They still are to an extent – I won’t live to be 1000.  But I went from a hopeless diagnosis to a lifetime of love and memories and gratitude.  That’s more than all right with me.

I like to think of my donor looking down on me and being proud of the experiences I’ve had.  He knows how thankful I am. I also like to think of my liver-sibling who received 1/3 of my liver as a tiny infant, and I hope and pray the child is a happy, healthy 5 year old today.  Our transplant was really so miraculous.  It’s a heavy gift that weighs on your soul yet lifts you up, somehow, at the same time.  Worth it.

And here’s to many more 5 years!!

Life with a Liver Transplant (Featured Interview)

My transplant sister Jewel features individuals with health obstacles and shares their stories on her blog, Jewel’s Kidney. She was sweet enough to share my story a couple months ago, and I’d love to share her site and the interview with you here. If you enjoy my blog, I know you’d love the stories on her site as well.

Life With… A Liver Transplant by Jewel, featuring Amanda Goodwin

Welcome back to “Life with…”.  And y’all, this is a good one.  Amanda’s story is incredibly inspiring. Going through her interview I laughed, I cried, I shouted “AMEN,” I nodded in agreement and at the end, I smiled. I love hearing these types [of] stories, reading about the battles fought and victories celebrated in this war against chronic illness.  And Amanda is a true warrior.  And if  you don’t feel amped after reading this then, I don’t know what to tell you.  So, without anymore rambling from me, meet Amanda!

Amanda Goodwin, blogger at “Crazy Miracle”

In one sentence, who are you?

A passionate dreamer who loves life, loves people, and is grateful for every part of my story.

What are you passionate about? 

I’m passionate about my hopes, my beliefs, my loved ones, making people feel special, traveling, and learning new things.  I love doing anything and everything with my fiancé and planning our spring, 2015 wedding. I also enjoy reading, getting crafty, and snuggling with my 9 pound dog, Haylie.

Tell the readers a little about your disease/ailment/illness/syndrome/healthannoyance, and what it was like when you were first diagnosed.

I was diagnosed with Primary Sclerosing Cholangitis, an autoimmune disease affecting the bile ducts and blood vessels in the liver, at the age of five in the early 1990s.  It was so scary because not only is this liver disease so rare, but I was only five years old and had no idea what was happening to me and why I was enduring so many painful procedures and treatments in the hospital.  I didn’t know why I had to miss a lot of school for doctors’ visits and hospitalizations, or why I couldn’t play rough sports with the other kids in gym class.  Thankfully, the disease stayed stable for years, and when I was 22 years old, my doctor found a tumor in my liver.  We were very afraid because this diagnosis necessitated a liver transplant, one of the most complicated surgeries of modern medicine.

Additionally, I was diagnosed with fibromyalgia in 2011 after a car accident in 2007 left me with severe, chronic pain.  Just this year, a rheumatologist told me that I’m also developing an autoimmune form of arthritis.  While it’s never exciting to receive diagnoses like these, it is sometimes comforting so that you know you’re not suffering with random pain without a cause.  Once you identify your disease, you are much more able to find helpful treatments and medications.

People with a chronic illness face a lot of challenges (A LOT)!  What’s one challenge that you’ve faced so far in your journey and how have you dealt with it?  

Physically, the chronic pain makes every day joys hard.  For example, I was on vacation last week, and standing all day in a museum or walking around the city would wreak havoc on my back, sending it into spasms for the rest of the day.  I would love to live just a few days without any pain and see how many things I could do!

Emotionally, fear has been a huge challenge for me.  When your health is always on the line, it’s easy to fear the “what ifs.”  I’ve cherished my Christian faith and my amazing support system as both have helped me stop dwelling on the future.  Also, cognitive therapy and medication has helped immensely, especially during painful or stressful times.

Who or what helps you make decisions about your health?

I have a background in nursing and a degree in public health, and when combined with 22 years of chronic illness, I have a great grasp on health in general.  I try to use natural methods when possible (such as rest, massage, or heat instead of pain medications, essential oils for simple ailments, etc.) and I avidly study treatments and conditions in scholarly publications to evaluate the research before beginning any treatment or having surgery.  I have an amazing team at the Cleveland Clinic who has taught me so much about my various health issues and consistently offers me all available treatments, and we go with what I think is best for my body along with each individual doctor’s recommendations.  I take great care to choose doctors who are well-versed in my specific illnesses, and they prove to be gold mines of information.

What was your transplant surgery like?  

The surgery itself went well, but the recovery was unlike anything I could have ever imagined or expected.  It was physically and emotionally challenging. If I knew what recovery was going to be like, I don’t know if I would have been strong enough to go through with the surgery.  I probably would have been too scared, especially now that I know the pain and complications that the surgery would entail.  My surgeons were truly gifted, but simply because of the complexity of a liver transplant, it was a long, arduous road.

What has your life been like since you had your transplant?  

Since I had liver disease 18 years before my transplant, I was always used to having a low immune system and balancing life with high levels of fatigue.  I was also used to taking medications and learning to listen to my body and rest when needed.  These things have continued to help me live the best life I can live since my transplant. Various complications occurred within the first few years after my surgery, and we had to finish all of my surgeries with reconstructive surgery due to the battlefield that had become my abdomen, but I take most health trials in stride because I’m so grateful that I’m alive with a beautiful, healthy liver.  And once you live through a transplant, I feel like everything else pales in comparison.

I have a ton of funny and memorable hospital stories.  Can you share one of yours?

Not sure if I have any funny stories, but definitely memorable ones.  Instead of seeing the transplant team, I now just see one of the surgeons because my case has gotten so complicated.  He’s one of the best in the world.  I had a full splenectomy a year after my transplant.  I was absolutely petrified of getting my surgical drains taken out because, well, unless you’ve had it done, I don’t even know how to describe it.  It feels like someone is pulling a snake out of your abdomen as it grazes all of your organs on the way out.  When it was time for my drain to come out, my experienced surgeon started having a conversation with me and engaging me in questions.  He carefully started pulling the drain while I was mid-story, and before I knew it, it was out!  I love him so much, for many more reasons than this.

What advice do you have for other people, young or old, who are waiting for a transplant?

Rally support.  Join support groups.  Ask your social worker to help you get in touch with other transplant patients so they can share their journeys with you.  Write down your questions, and get answers.  Get your family and friends on board because you are going to need all the support you can get.  Realize that recovery is hard and you are going to need help doing basic things for awhile. If anyone offers to help you, take them up on it.  Also, prepare mentally that recovery will be hard, but know you are strong enough.  Having a will to survive is critical. There are special things after a transplant that will affect your life (such as being on immune compromising medications) but you will get used to them sooner than you think.  You CAN live a great life once you get past your limitations.  You are receiving the GIFT of life itself, and that alone is worth all of the struggle or lifestyle changes you will be making.

And finally, what brings you joy?

Being alive.  Hearing other people’s stories.  Showing love to those who need it most.  I feel like I’ve been given a second chance at life for a reason, and I try to live my life in a way that would honor my donor and make my giving heart content.

Thank you so much, Jewel, for getting the word out about life with a liver transplant.  Organ transplants – as Jewel knows because she received a kidney – are amazing, life-saving gifts, and the world needs more people to choose to #donatelife!

An update and an invitation

It’s been so long since my last update. I’ve been busy enjoying life and, oh, just getting engaged to my best friend and biggest, sweetest supporter. 🙂 We are getting married in the spring, and we couldn’t be more excited.

View More: http://footstepsphotography.pass.us/goodwinengagement

I’m nearing four years with my new liver, and it is so healthy. I only have one more year of the hepatocellular carcinoma protocol and then I’m officially in the clear. I’m doing well since my last major surgery last August and the reconstruction has not only helped cosmetically but it has radically eliminated my adhesion pain. If you have had multiple whole-abdominal surgeries like I have and you suffer from pain from adhesions (or undiagnosed, piercing abdominal pain) please look into this. Insurance covered mine since it was done for medical reasons (adhesion pain). Before the surgery, I was going to the ER regularly for sharp, overwhelming abdominal pain, and I haven’t had to go in at all since the surgery. The surgery was pretty major, lots of staples (or was it stitches? I don’t remember), and I ended up in the ICU afterward due to almost going into sepsis, but the pain was completely worth it. I’d do it again in a heartbeat.

As I’m on immunosuppressants to prevent my body from rejecting my liver and suffer from a few chronic illnesses, my immune system is pretty weak. I have always been regularly sick, frequently on antibiotics, etc. I finally got fed up and saw a renowned ENT (ear nose throat) doctor at the Cleveland Clinic, Dr. Geelan-Hansen. After one look in my throat, she suggested that she remove my tonsils. I had been told before that they were “cryptic tonsils,” which means that they were so swollen they would rest on the back of my throat. She told me it would be two weeks of the worst pain in my life (that’s a LOT of serious pain to beat!) and to stock up on all of the soft, cold foods I could find. I was afraid of what could possibly be more painful than a liver transplant but was pleasantly surprised how minimal the pain was. Eating Jell-O, ice cream, and oatmeal for two weeks in January was far worse than enduring the pain. However, my throat has not hurt a single time since recovery from surgery, and that is a big accomplishment for me!

I found myself calling Dr. Geelan-Hansen again this spring after half a dozen ear infections, and we decided to add tubes to my ears as well. This happened a couple weeks ago. Ear tubes help fluid drain out of ears rather than sit around and cause infections, and so far, I’m enjoying no more ear infections! I had them inserted under general anesthesia, and I’m definitely glad I did that as the post-op pain was pretty bad for about a day.

I have been so much better, as far as getting sick goes, since both surgeries.

Around the time of the tonsillectomy, I was getting overly upset about my chronic pain. Every single day, I was in excruciating pain, and anything I did just made it worse. As I’ve mentioned before, I have tried every single pain relief option (medication or treatment such as massage/physical therapy) for years and nothing has worked enough to continue it. A friend recommended that I see a local rheumatologist who almost cured her pain, but I had procrastinated because I didn’t think the doctor would be able to make much of a difference. This winter, I decided it couldn’t hurt to try. Dr. Azem was so compassionate and kind and also a genius. After one look at me, she had several points of evidence that I had psoriatic arthritis. She ordered some labs to rule out other things and upon a second visit, she confirmed the diagnosis. It’s basically an autoimmune form of arthritis that produces severely painful, swollen joints. It typically causes psoriasis, too, which is a skin disorder, but thankfully I don’t suffer from those symptoms at this time. So while I didn’t need any more diagnoses, I was happy that we now had some new treatment options to consider.

Between careful discussions with both my rheumatologist and my transplant team, we decided a drug called a biologic would be the best first course of treatment for my PsA. There are several biologics, all taken via injection or through an intravenous line (IV), and my doctor thought Enbrel would be the best treatment for to start with. I have been injecting myself weekly with Enbrel for around four months now, and I’m happy to say my pain has decreased. It hasn’t been a miracle drug, but I have noticed a difference in my pain levels. I am so thrilled to report that. The shots burn pretty badly, and I’m no baby when it comes to pain, but 30 minutes of icing my leg before the injection helps a little bit. I have some other ideas on reducing injection pain that I will share later after I try them.

I’m also experimenting with natural remedies like super foods and essential oils which I am loving and will share once I try a few more things I have in progress.

The PsA flare ups are horrible. (I have been having them before the diagnosis but I considered them to be fibromyalgia flares.) Flares are a short time (weeks/month) when the pain is completely out of control, and they come from absolutely no where without any warning. I’m thankful that there is also a treatment for PsA flares – steroids and pain medications. Steroids, while definitely not a drug I would choose to take, decrease the inflammation, and the non-narcotic prescription pain medications take the edge off.

Compared to my health at certain times in the past, I am so great. No big surgeries, no more chemo, no more balancing on the tightrope over death. I really couldn’t ask for anything more than I have now, both physically and in my personal life. Of course I sometimes still struggle with my new normal, and I wish I had as much energy or as low pain as “average” people, but this is my reality. This is what God has given me, and it’s my job to make the best of it and inspire others with the provision He has given me throughout the past 22 years of illness. Each day, I think of how much I owe to my organ donor for so many more opportunities to live my life to the fullest. I wish I could repay him in some way, so I just pray for his family and hope to meet him in heaven one day. He is my angel.

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Also, it’s that time of year again!! It’s my team’s 4th annual Lifebanc Gift of Life Walk & Run at Blossom Music Center! So far, we are going to surpass our record for biggest team in our team’s history! I am so blessed to have such a great support system to support such a life-changing organization as well as the fact that I’m alive because someone said “YES” to organ donation. Please click here to view more information. I am officially inviting you to be a part of a truly fun, exciting morning. Please consider joining our team or even donating the cost of tomorrow’s latte for the cause of organ donation in Northeast Ohio!

Love to you all.

Gifts, grace & gratitude

When someone dies so you can live, it has a profound impact.

Look at our faith.

God gave His Son to die so that we are forgiven – John 3.16, one of the most popular Scriptures of all time. Yet do we really understand the simplicity and complexity of it? We love Him because He first loved us; it almost seems hard not to. We may feel forever indebted to Him, yet we could never repay the gift. So we try our best to live up to what has been given to us, the blessing and securities of life here on earth, and more importantly, the eternal life we have to come. All because we did nothing, and He gave everything.

After I received my liver August 31, 2010, something similar happened. While this temporal life isn’t nearly as important as the gift of the eternal life and the heaven our Lord has in store for us, I believe it is the next highest gift one could ever receive. Yes, God numbers our breaths, but the gift of life is God’s way of extending them. And what a donor family chose to do for a stranger – someone possibly not even worthy of such a gift – is so selfless. My donor family lost their son and chose to help others through their tragedy. Not much is more beautiful than this. Again, I did nothing and received everything. Perhaps I wasn’t even worthy. What makes one worthy of a second chance at life, anyways? And how to we repay such a gift? Again, I don’t think we ever could.

How undeserving we are of the gifts the Lord gives us, yet how much more grateful are we to realize this?

This is the beauty of grace.

Will you join me on August 3rd in my annual Lifebanc Gift of Life walk/run team honoring our donors, our recipients, and the families that chose to give life? My three-year transplant anniversary is August 31, and this is a milestone. I’ve gone through so much, but I’m doing so well. I savor each day, each new experience, hoping my donor is looking down and smiling. I received one of the most tragically beautiful, profound gifts, and my miracle is my existence. I’m so grateful, and I’m asking you to celebrate with me. Three years… I’m speechless, in awe of sacrifice and providence.

2012 Lifebanc Gift of Life Walk & Run

I humbly invite you to consider supporting my team this year. We have a lot of fun, and the event is so beautiful. You can sign up or make a donation <<right here>>. We are grateful for each and every one of you. You are our friends, our family, and precious strangers who care. You all are my gifts, and I could not have made it this far without you.

Full of love and gratitude,
Amanda

A liver for Chelsea

Chelsea
I learned of Chelsea last week and my heart broke in two reading of her story. I read every page on her website and took in each word.

To refresh your memory, hepatocellular carcinoma, or HCC, is the adult form of liver cancer that my doctor discovered I had in May, 2010, which led me to transplant 3.5 months later.

21 year old Chelsea was diagnosed with HCC at age 4 and was treated with 40 chemo treatments and several surgeries. I don’t know her story in detail, but I’m sure she dealt with much more, including the emotional agony of growing up in hospitals.

Her mother gave her a partial liver transplant at age 7 and it lasted 7 years longer than it was projected (14 total). However, she endured some complications that left her liver damaged. All of the issues had caused strain on her kidneys, and she was forced onto dialysis. She lived at Cleveland Clinic in the ICU for a long period of time as she waited for a rare liver: intact (vs. partial), small (her years of illness caused her to be small), and O- blood type. As I know from my nursing experience, type O isn’t the easiest type to match.

Since Chelsea is my age, with my disease, with a history of several illnesses, and the same transplant team as I have, I felt an instant connection. We share so much in common. I wished I could do something to encourage or help her.
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My mom was watching late night news tonight, and then there it was – the newscaster said the words “liver transplant” so I instantly looked up. Chelsea’s picture came onto the screen just as they said she lost her battle today. Chelsea had gotten a liver last night and from the times posted on her website, it seems as if her body succumbed during the actual transplant.

Tears came to my eyes, and I gasped. I told my mom the whole story, and she was upset as well. Then she told me how blessed I am.

When people like Chelsea are out there, I don’t feel as blessed. I’m so caught up in the “Why me?” “Why her?” questions. Why did I live through the surgery while Chelsea didn’t? She was a year or two younger than me at the time of her transplant so you’d think she’d have a better chance than me. I was small and needed a rare donor as well, yet I waited only 3.5 months. I never got to that point where I was in the ICU for days like Chelsea, or, like my hospital roommate last month, in end-stage liver failure, full of several liters of fluid that needed drained regularly. Who chooses who suffers most? Who chooses who gets it worse before some kind of intervention – supernatural, surgical, or otherwise?

All transplant patients have unique bonds. We share each other’s struggles and triumphs. We wish we could take the pain from any fellow one, whether we know them or just hear their story. We are all entered – involuntarily – into this club, the Transplant Club, and if death or complications harm any of our brothers or sisters, well that just won’t work for us. We put up a fight because we have been there. The hit is too close to home.

Who chooses who has tragic complications? Why can’t we all triumph through? Why can’t our youngest ones pull through to live happy, healthier lives? Doesn’t it seem obvious?

I’m grieving for a girl who I never knew. She’s my transplant sister, so I love her anyways. I wanted to send her a card telling her my story and how I was pulling and praying for her. I was hoping my story would encourage her to keep pulling through, to give her more hope to keep going another day. Sadly, she’ll never see my card.

Rest in peace, sweet Chelsea. All of your transplant brothers and sisters are crying for you today. We pray for your family and friends and hope even in your death, your story will live on and continue spreading to thousands of people, giving everyone courage, strength, and perspective, inspiring each one to ultimately donate life.

Always hope

Today, I’m low on words.

Two years ago tonight, I received a new liver, and my life was forever changed. I am so thankful for my donor and these 730 days of new life.

Each day is a joy and a challenge, a battle and a dance, yet full of grace to last until the next.

Always hope, loves.  Always.  Each day is beautiful; each day is a brighter day.

Amanda

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.

Eleanor Roosevelt

Leaving a legacy

This week, my uncle went home to be with Jesus.  I want to tell you a little about him and how he played a part in my story, and now in the story of so many others.

God must have needed a very loving angel when he called my uncle home. We may say his life was too short or we want to keep him here to love or to do more good, but God’s ways are higher than ours. Uncle Kirk is going to touch more lives for our Lord through his death as complete strangers learn about his legacy and the life he lived.

I was his second niece and flower girl, the little girl who would come over and entertain his girls and play with his dogs.  I will always remember his hugs and devotion to his family. He loved so many people and so many things. He brought our family a lot of joy.

In remembrance of my uncle’s love and humility, I want to write about something that is special to both of us. Uncle Kirk and I are the only people in our family who now truly, personally understand the gift of organ donation through being a recipients or donor.

During the summer of 2010 while I was waiting for a life-saving liver transplant, I rallied to raise money for a fundraiser for Lifebanc, our area’s organ donation and procurement agency. Without any asking, Uncle Kirk took it upon himself to personally raise hundreds and hundreds of dollars for my team. At the day of the fundraiser, Uncle Kirk wanted to sign up to be an organ donor. I had no idea at the time.

At the hospital this week, shocked at the sudden state of my uncle, I found out about his decision, and I was moved.

How like my Uncle Kirk was it to want to be an organ donor? To want to use his healthy body to someday save and change the lives of dozens of strangers? Kind of predictable in hindsight.

He got his wish, and I’m in humble awe of how my story helped move him to that decision. Today, so many people are beginning their new lives all because of my uncle and his giving heart.

As a 2-year liver recipient, I cannot even express what a gift Uncle Kirk has given to not just one person, but so many. A dad could have sight today or a young boy have a new, beating heart. Maybe like my story, a college student and an infant are sharing a strong, healthy liver. Perhaps a burned, injured soldier has a chance to look normal again, and a woman on the verge of death is breathing through pure, healthy lungs.

My uncle made a difference every single day, but I want everyone reading these words to know that he will continue to make a difference every single day…. Literally.

He will live on and make a difference through his legacy, without a doubt, but you all know that. I want you to know and forever remember that he gifted his body to dozens of people and his love is literally living on all over the nation. And it will continue to, just like the memories in our hearts.

Thank you for loving my uncle and my family, and thank you, Uncle Kirk, for leaving a beautiful legacy of love.  You will never be forgotten, and you are living on through your death.  In heaven and on this earth.