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!

Quiet

I haven’t said much lately because life has been pretty still for me. My heart has been quiet– there have been no major health scares and my loved ones are well. All is quiet here.

Yet isn’t it funny how “quiet” and “normal” to people like me means sinus infections, shingles and its post-herpatic neuralgia, carpel tunnel, anesthesia treatments, and a few ER visits.

And isn’t it funny how when you’re living your love, you just don’t notice as much?

I’ve spent so much time with my kids, my family, and my friends, and I’ve been so busy with my classes, commitments, and trying not to push my body off the deep end.

But I have to give the most credit to my kids. They are the reason I get out of bed each day. They are the people who say the funniest things and make me smile from ear to ear. They give the best hugs and show me how important I really am and affirm my love is mutual.

This is the quiet balance that keeps my life running and my joy before my pain.

For those wondering, up to bat after Christmas is Botox treatments for my migraines, a consult with an orthopedic surgeon about my carpal tunnel, my biannual tumor markers/CT scan in a few months, and maybe even abdominal reconstruction surgery. Those are my possibilities and I pray I get through what comes with grace and quiet. To some, that may sound scary or daunting, but when you have pain or issues, peace is getting it fixed. So with the best things present in my life, I will proceed with my plans. And with my family, friends, little loves, and Lord – I will transcend.

Praise Jehovah Jireh!

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

Life, Interrupted: Medical Bills, Insurance and Uncertainty

I like to write my own pieces on this site, but sometimes I read things that resonate much too deeply to ignore.  Things that I want to shout from the rooftops and say, This is real life.  This is my life.  Why didn’t I think to write that first?

Suleika Jaouad writes a column for the New York Times called “Life, Interrupted,” about being a young twenty-something with cancer.  Sounds familiar, right?  Her article today struck a chord deep inside.  I hope you’ll read it and understand exactly what my family and I go through playing the patient-vs-insurance game every single day.  I hope you’ll pray for health care reform in this country and that it helps instead of hurts and doesn’t end up leaving we chronic illness patients just more sick and tired.

Here’s our story.

Like a lot of other young people, I never thought about health insurance until I got sick. I was 22, and my adult life was just beginning. But less than a year after walking across the stage at my college graduation, I received an unexpected diagnosis — acute myeloid leukemia — and with it came a flurry of consultations, tests and appointments. From early on, my doctors told me I would need chemotherapy and a bone marrow transplant.

But before the shock of the news could settle in — before I could consider where and how I would be treated — I did what most Americans must do when beset with a medical crisis: I called my insurance provider.

Before I made that first phone call, I confess I didn’t know exactly what the word “premium” meant. And “co-pay” sounded to me like what happens when friends split the bill at dinner. Certainly, the term “lifetime limit” had no meaning to me yet. The last time I could remember getting sick had been a two-day bout of food poisoning during my junior semester abroad in Egypt. Now, I was facing cancer — and I was beginning to get worried about coverage from an insurance plan I knew virtually nothing about.

If you have a chronic illness in America, there’s a good chance you also hold a degree in Health Insurance 101, whether you want to or not. The first thing I learned was how lucky I was to have health insurance at all. (An estimated 49 million Americans, and nearly one-third of Americans 18 to 24 years old, are uninsured.) I was on my parents’ insurance, a plan provided through my father’s employer. It’s a comprehensive plan that will cover me until age 26 — two years from now.

I’ve been fortunate to be treated by excellent doctors at world-class hospitals. In the last year alone, my insurance has covered over a million dollars in medical expenses, including a bone marrow transplant and 10 hospitalizations amounting to a combined five months of inpatient care. It all sounds straightforward when I explain it like that. But even if you have insurance, the cost of health care — in dollars as well as in time and stress — is incredibly high.

As health care was debated around the country leading up to the Supreme Court ruling on the Affordable Care Act in June, my bills kept coming in. Every time I see a doctor, get a CT scan, receive chemotherapy or pick up a prescription, insurance covers only part of the transaction — and there’s always a bill on top of it. For a cancer patient like me who visits the hospital on a weekly basis (and that’s when things are going well), every few days I owe another payment. Keeping track of how much I owe, and for what procedure, and why, can make my head spin. Just learning the ins and outs of my plan’s coverage takes sustained, persistent attention and energy, things that sick people have in short supply.

And no matter how closely I keep track of the bills, there are always surprises and unexpected charges. During a six-week hospitalization for intensive chemotherapy, teams of doctors trickled in and out of my hospital room every few hours: my primary oncologists, the palliative care unit, gastroenterologists, X-ray technicians, infectious disease specialists and on and on. Most of the time I was too tired, too nauseated or too looped on pain medicine to remember who was who or what they were doing in my room. But my insurance company kept track. Even though my hospitalization was covered, many of the doctors who visited me were not part of my health plan, which meant that for every time they set foot in my room I would receive a steep out-of-pocket bill. After all, what was I going to do: tell the doctor prescribing my anti-nausea medication to skip my room because he happened to be out of network?

Another cost of health insurance is time. Time is money, as the saying goes, but when it comes to cancer and health insurance, to save money takes up a whole lot of time. My mother graciously took on the task of disputing claims, keeping track of bills, requesting approval for a procedure or a drug, and spending countless hours on the phone with my provider. While it may be a labor of love for my mother, in practice, working out insurance questions is just a lot of labor. Between the long hours spent taking care of me and dealing with our insurance, my health care became my mother’s full-time job.

So far, the out-of-pocket costs associated with my cancer care — co-payments, out-of-network charges, the costs of moving to a new city for treatment, fertility treatments not covered by insurance — have reached tens of thousands of dollars. The financial burden of cancer has not yet meant that my parents will need to get second jobs, or that we will have to sell our house — though I know of fellow cancer patients with and without insurance who have had to consider such options. But my mother has had to take the last year off work, a financial and professional sacrifice that’s due in part to the time required to manage my health insurance. What do others do who don’t have full-time help from a caregiver? My mother would do anything for me, but I wish she would be able to spend less time with my bills and more time with me.

In two years, I’ll graduate from my parents’ insurance. What will I do about insurance then? Perhaps I’ll gain coverage through an employer — though holding a job seems like a tall task if I’m still in treatment. Isn’t it a contradiction that insurance is often tied to employment, but that the sick people who need it most are the ones who have the hardest time staying employed? If the Affordable Care Act remains in place, at least I won’t be denied coverage because of pre-existing conditions. That’s a huge victory, but what will the cost of that coverage be, and will I be able to afford it?

When I’m lying in bed at night, I often worry about how cancer may affect my future: my career, my relationships, my dreams. Sick people don’t plan on getting sick. We shouldn’t have the added worry that someday insurance coverage may not be there. Or that a medical crisis could become a financial one too.

It’s good to know I’m not the only one.  And special thanks to my parents who take their powers of attorney jobs seriously and know how to argue the sense out of bill collectors and insurance companies. 😉

It’s been 18 months since that day… and I just wanted to thank all of you for standing by me.  My sister and I just had a really fun weekend, and I wanted to share with you just how healthy I look, 18 months post-transplant.  For those who may be reading and are contemplating a transplant or see it looming in the horizon, you will be okay.  Things will be hard and some days a challenge, but the battle will make each moment of life just that much more sweet.

I love you all,
Amanda

Through it again

I started this post Wednesday night after I had the procedure done to open the stenosis in my veins.  I’m going to finish it now and get it up for you, but please note I’m dealing with a computer issue.  To get the full effect, you need to see two imaging printouts I have, BUT my scanner decided it doesn’t like my computer.  So check back for that!  🙂

It’s the middle of the night on G-101, the Transplant Special Care Unit at the Cleveland Clinic.  It’s 2.29am, to be exact, and things aren’t exactly quiet.  The buzz of new transplants is in the air.  Several new patients are joining the floor, and more are waiting in the post-surgical ICU to come up.  The nurses are busy, and thank goodness I’m not needing them too much tonight.  Other than pain meds every two hours and anti nausea every six, I’m hanging tight dealing with my never-ending insomnia by getting some work done on my computer.  I still have that wide-awake yet very drowsy feeling of post-anesthesia and pain meds.  I just ate a bowl of Cheerios and am sipping on some milk, mmm.

Yesterday’s procedure went very well.  Dr. Sands went in through my ribs and threaded a stent to where my left renal vein and portal vein connect.  The stenosis in the reno-portovenous anatomic stricture was very bad, and the doctors were thankful they caught it in time.  The stent is now in place, and…

… apparently that’s where I got distracted, fell asleep, decided to call my nurse for more meds, etc.

So anyways, Thursday’s ultrasound showed the stent was doing well, and we saw increased perfusion to my liver which is exactly the result we wanted.  With such a narrowing, my liver wasn’t getting enough blood in/out.  So now the stricture is wide open with blood evenly flowing as it should.

I have a “before” and “after” scan from my doctor that shows several cool things, including all of the new blood flow to my liver.  When my scanner decides to work, I want to post it for you.

For now, thank you again for all of your prayers!  Tomorrow I go back to normal life – driving, events, nannying… everything I love so much.  It’s been (almost) six weeks since my splenectomy and other than incisional pain and referred nerve pain in my left shoulder/arm, I’m doing very well.  I’m back in sewing class, I’m participating in an event at school tomorrow about our Ireland trip, I have a busy social schedule, and I’m finding time to rest and read and enjoy these slower days before things speed up in the new year.  Right now, I feel safe and content.  I figure if I’ve been though this much, if God’s carried me through pain this deep, then how much worse could it really ever be?  God is my provider, and “an ever present help in trouble.” (Psalm 46.1)

Remember that this week.  Oh how He loves us.
Amanda

6 months

6 months.

Are you kidding me?

I was laying in bed last night when it hit me – I passed by my 6 month transplant anniversary (3.1.11) without even noticing.  I’ve been feeling that good.

I’m floating through school, maintaining an amazing social life, volunteering, spending time with my kiddos, being a mommy to Haylie, and so much more.  My DVR is so backlogged and my homework doesn’t get done as often as it should – I’m just so busy diving headfirst into everything with this new life I’ve been given.  I’ve never been able to keep up a pace even remotely close to this.  My mom keeps telling me to slow down, but I can’t.  Everyone is trying to get used to my new life, booking my days full and going, going, going.  It’s amazing to all of us.

I’m so grateful.  I will never forget how life was before, how different it was from today.  It’s a huge part of who and where I am now, and I want to make sure I never lose that.  I think remembering only magnifies the gratitude in my heart.

With that said, I haven’t updated you all in a while and I want to ask you to hold me close to your heart and in your prayers right now:  The surgery and the time before are beginning to come back to me a lot lately.  I told a close friend that the memories are really starting to haunt me.  I’m trying to process them and heal, to give them to the Lord and to move on.  While my life may be going great right now, the intense fear of my story is beginning to hold me back.  I suffered from post-traumatic stress disorder after my childhood illness, and I went through exposure therapy to move past it.  I think that experience has made me fear the potential that any memories like these can have, and I pray God gives me peace before it gets out of control.  

I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.

John 16.33

So six months, wow.

We are so blessed.