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!

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Caregivers’ Month blog carnival

United States’ President Barack Obama officially signed November, 2012 as National Caregiver’s Month. This is very special as all of us patients know how much caregivers truly sacrifice to care. And care well.

It takes a special person to be not just a caregiver but a good caregiver, a caregiver who promotes health, wellness, comfort, and support in all he or she does. Caregivers are parents, children, doctors, nurses, friends, and even staff on the hospital’s transport team or in the gift shop. They may be in unexpected places in unexpected positions, but we are completely grateful to them for sharing their smiles and hearts. In this month of Thanksgiving, honoring them seems almost obvious.

For this month’s international Patients for A Moment blog carnival, our topic – in honor of the month – is Caregivers. Everyone is welcome to share a blog post about a caregiver, caregivers, or even being a caregiver. Please comment with a link to your post and any special comments about your post OR send an email with the preceding information to agoodwin2010 (at) gmail (dot) com with the subject of PATIENTS FOR A MOMENT. Submissions are due November 24 so you have time to gather your thoughts after the US Thanksgiving holiday. The final edition will run live here on Crazy Miracle on November 30. Please write and submit! No submission is too small or insignificant. Share your voice – I know we all have something to say about this topic. Love to you all!

Liver Mamas

“My name is Kai.  My last name is Fairy Princess!” she’ll tell you.  She’s a happy, spunky preschooler.  You’d never know that when she was 4 months old, Kai received a liver transplant because she had biliary atresia.  Her daddy donated part of his to her, saving her life.  Read About Kai on her mom’s blog to get a picture of what a little girl with a life illness is like.  Seemingly healthy on the outside but living a life just like I did at her age – adjusting normal to mean meds, hospitals, tests, procedures.  Growing up thinking that is normal.  Oh, to be that innocent again.  To be too young to realize that your normal is not normal.  Stay young, sweet Kai.  Stay young.

Jasmine, Kai’s mother, keeps a beautiful blog chronicling her daughter’s journey.  I asked if I could share one of my favorite posts of hers, and she gave me permission.  I think everyone needs to understand what mothers/fathers/parents of “sick kids” have to go through.  Now at 24, I’m really realizing that it wasn’t only me suffering for all of these years.  It must have been hell for my parents.  I wonder if some days still are hell for them.  None of us signed up for this, but together, we draw strength, and we get through whatever is coming up next.  I hope you enjoy this post by Jasmine and visit her sweet blog.  I would love to meet the Hollingsworth family one day and give Kai a big hug.

Watch this sweet video of Kai…

Now without further ado, here is “Once a Liver Mama, Always a Liver Mama” by Jasmine Hollingsworth.  I dedicate this to my Liver Mama – you know you’re not alone.  Thank you for always fighting for me and for never leaving my side.  Only a few months until you’ll be a Liver Mama of 20 years.  I love you, Mom.  I wish you could be some other kind of mama, but I’m glad I was blessed with you.  I can’t imagine going through these years with anyone else by my side for every single moment of fear, all of the pain, and even the bright beacons of hope.  We have a unique relationship because of the battles we’ve fought hand in hand for 19 years, and I treasure you all the more for it.

As I sit and keep a distant, online vigil for a baby and a family I have never met, I am forced to reflect.
 
Liver Mommas: We support each other. We share our stories, our joy, our pain, our disappointments, our triumphs, our hope, our advice… But, most of all, we share the experience of having a child with a life-threatening liver disease, more often than not, leading to transplant and the life-long trials and complications that come with that.
 
When someone announces “THE call has come; a match has been found!” We rejoice. Those of us who have been through transplant feel the excitement, the anxiety and the rush of conflicting emotions that we remember from our own experience. Those who have not, I imagine, feel the excitement and hope, fear and longing that goes with the waiting and watching your child grow more ill. 
 
When we hear “There are complications, we need prayers!” We bow our heads and fervently whisper words of love and hope to be carried to heaven, knowing the fear and the way time freezes as you wait to hear that, hopefully, everything will be okay.
 
Sometimes, with a profound sadness that cannot be expressed, we receive the devestating news that a tiny spirit was too great for this earthly world and was called to heaven. Those of us who have never experienced this have a mixture of emotion… grief for the life lost and the family, a desire to reach out to comfort where we know there can be none, a gripping fear in the knowledge that our story could have followed the same path (and maybe still could), guilt that we were “the lucky ones”, and a renewed appreciation for the life of our own children and each day we are blessed to spend with them.  
 
To those of you waiting, we know it seems endless. We remember the hope and we hope with you. To those of you recovering, it’s a long road, but you and your child will get there. One day you will look back at how far you have come and marvel at all that has been accomplished. To those of you who have come out pink and rosy on the other side, we celebrate and cherish each day with you, knowing that tomorrow could bring new challenges and fears. To those of you who have experienced the loss of your precious baby, I have no words of comfort; saying that I’m sorry for your loss does not even begin to adequately cover the depth of my empathy. 
 
I can say this, though: Once a Liver Momma, always a Liver Momma.