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!

What Ebola prevention means for immunocompromised transplant patients

Ebola can be scary, especially for an immunocompromised transplant patient! (Especially in Cleveland/Akron where an Ebola patient traveled immediately before being diagnosed!) The media is going crazy with every lead they can find, and people are blowing things out of proportion on social media.

Instead of being consumed with fear, I decided to get some answers.

On my quest of separating facts from undue overreaction, I’ve generally avoided the media and stayed in-tune to the CDC and live airings of our local health departments, doctors at our top Cleveland hospitals, and government officials.

I’m speaking to you both as a fellow transplant patient and as a person experienced in nursing and holding a Public Health Education degree.

First of all, Ebola is not contagious unless someone is showing active symptoms. Second, Ebola is not airborne which means you won’t get it from sharing a bus or plane with someone who is showing symptoms. The only way to catch the virus is to handle bodily fluid of an Ebola victim and somehow get it into your body. This could be due to a paper cut on your finger that it seeps into or from transferring the substance to your face/mouth. And lastly, remember that anyone in contact with the virus may not show symptoms for 21 days. I’ll talk about that later.

As transplant patients, hand washing and avoiding sick people is drilled into our brains.

Believe it or not, that’s really all that applies with Ebola, as well.

Avoid anyone who was in contact either with an Ebola patient or anyone in quarantine. Wash your hands after going anywhere, before entering your home, after using the restroom, etc. Just use common sense.

I talked with my transplant surgeon who is renowned in several states around me, members of many boards, and has received training around the world. I have trusted him with my life for several years, and he is the best of the best. His exact words:

Just follow all the protective measures as you have been doing. No need to wear masks or surgical gloves when you go to the shopping mall or church or similar places. No need to cancel your travel plans if you have any. Just follow the general precautionary measures and don’t make life hell for yourself. No need to be in masks and gloves like what was seen frequently yesterday in airports and in planes.”

Knowledge is power, so go over to CDC’s website, and read up. Ask your doctors any questions you may have. They are all receiving constant training on any changes in the disease and are there to help you. You can also call 1-800-CDC-INFO, however if you are a transplant patient, I would start by calling your coordinator/surgeon.

Let’s believe in God to keep His children safe and rest in the knowledge we have of this virus.

Great links:
CDC Press Releases

CDC’s detailed pages on Ebola

Grateful

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I am so deeply grateful to be celebrating my fourth “transplantaversary” today. Yesterday marks the day I entered surgery to receive a new liver, and today marks the day that I awoke for the first time with new life within me.

Without my gift of life, I wouldn’t have received the opportunity to love again, complete my education, visit new countries across the world, become a godmother, meet new friends, touch more lives, or savor every ordinary day.

The journey has – at times – been treacherous and almost too much to bear. There has been fear and pain. But today, I live a beautiful, charmed life that has only been possible due to the generous gift of my organ donor and his family and the support of my family, friend, and even strangers around the world.  There aren’t enough words to express my gratitude.

Please consider signing up to be an organ donor, if you’re not already. It’s a pretty simple, yet empowering thing.  Just go to this website and sign up. Next time you renew your license, make sure that they put the tiny heart symbol on it, signifying your wishes. And most importantly, tell your family so they can authorize it when you’re not longer able to do so yourself.  120,000 people are waiting for what a lot of us take for granted.  18 of them die each day because there aren’t enough organ donors.  By signing up to be a donor, you can save up to 8 lives and heal up to 50.  Once you die, you won’t need any of your organs anymore, so why not share them with someone less fortunate than you? Think about it…  Feel free to contact me with any questions you may have.

With love and gratitude,

Amanda

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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.

A gift

Stacy Kramer, and TED, thank you so much for this.

I wouldn’t change my experience.  It profoundly altered my life in ways I didn’t expect… So the next time you’re faced with something that is unexpected, unwanted, and uncertain, consider, it just may be a gift.

Stacy Kramer, brain tumor survivor, so eloquently told the story I’ve relayed to countless individuals.  I think a lot of us who endure life-threatening illness come out to see what a gift it was.  As I’m sure it was for her too, many of my nights were sleepless; there was a lot of pain. I wondered a million times Why me? How can I get out of this? Please, can someone make this stop?!  But standing on the other side of the whole ordeal, as I am now, it’s so much easier to see how the longest days would make me a better person in all the ways I needed, introduce me to hundreds of people I could learn from or impact, and teach me that there is more to life than anyone ever had thought.

So grateful for my gift.  I wouldn’t wish it upon you (you wouldn’t be able to see it was a gift until it was all over anyways), but I’m thankful to God that he brought my scariest, darkest, most painful experiences into something I’m now so grateful for.  May His light keep shining through the darkness.

Stereotypes and prejudices

There aren’t many things that make my blood boil, but any kind of prejudice or stereotype will.  Especially when it’s indirectly targeted at me.

I have been absent from my posting for a little bit due to the crazy busy (but wonderful) holidays and wrapping up my baccalaureate degree in Public Health with a focus of Education and Promotion.  But I need to say something important right now.

I’m in a writing intensive course where we are to write a lengthy paper on a topic relating a health disparity.  Naturally, I chose “Organ transplantation among socially vulnerable adults.” A peer commented on my topic, and he mentioned alcoholism and drug abuse-inflicted liver transplants and ended his piece by saying, “I personally don’t agree there is a large enough disparity, only because many of these people’s conditions are self inflicted.”

First of all, self-inflicted or not, you still treat a patient.  If you were a doctor and someone came into your emergency room after trying to commit suicide, would you save them?  Of course you would.  I understand the limited number of livers available makes this a little bit more of an ethical question, and I will digress for a moment to say UNOS (United Network for Organ Sharing) and transplant centers have extremely stringent rules for listing an alcoholic for a transplant.  If you are an alcoholic and need a liver, you wouldn’t even make the waiting list until they were sure you were sober with a low chance of returning to old ways.

It is very hurtful when someone holds a prejudice towards you or one of your kind – your race, your health status, your financial situation, whatever it may be.  Our instructor in this course has specifically asked to know about anything being said by our peers that is “uncomfortable” to us, so I wrote her an email to say I was more than uncomfortable.  I am just posting this so that all of you know that people dying of liver failure waiting on organs are not a bunch of alcoholics.  The majority (90%) of us have, or had, diseases that we in no way, shape, or form, have/had given to ourselves.

I’m extremely uncomfortable with [my peer’s] reply to my paper topic idea, health disparities affecting access to liver transplants. He ended his post by saying, “I personally don’t agree there is a large enough disparity, only because many of these people’s conditions are self inflicted,” referring to drug and alcohol abuse.
This is a huge myth. I became sick with an autoimmune liver disease at age 5. I was not an alcoholic; my body simply attacked itself. I’ve done research on indications of liver transplantation, and alcoholism/drug abuse account for an extremely relatively small proportion of all transplants. When I was a teenager (before my transplant in 2010 at age 23), I had an emergency room nurse flippantly say, “Why do you have liver disease? You must have been an alcoholic for years!” I was heartbroken as it was the first time if had experienced that prejudice. Not one ounce of alcohol had touched my diseased liver. Ever.

Maybe I’m overreacting, but I am hurt by my peer, a student in the advanced stages of a health degree, no less, being condescending toward patients with liver disease.
I tried to politely respond and tell him the truth so that he could learn from this experience. I hope we all learn something from this. Preconceived stereotypes are extremely hurtful, and we must be extremely cautious never to have them with our patients/clients.
Maybe you don’t believe this myth about liver transplant patients but you think all people with diabetes gave it to themselves by eating junk food, all the people in that neighborhood are drug addicts, or even that another race is just a little less “worthy” than yours.  Well, I would like to firmly propose that no one should say anything negative about anyone unless they have done extensive research and know it to be 100% true, 100% of the time.  Which pretty much would eliminate any stereotypes because none of them meet those criteria.  And if you can somehow outsmart me and find something that meet those criteria, and want to voice your prejudice, don’t.

Gratitude

Gratitude by Nichole Nordeman Send some rain, would You send some rain? ‘Cause the earth is dry and needs to drink again And the sun is high and we are sinking in the shade Would You send a cloud, thunder long and loud? Let the sky grow black and send some mercy down Surely You can see that we are thirsty and afraid But maybe not, not today Maybe You’ll provide in other ways And if that’s the case … We’ll give thanks to You with gratitude For lessons learned in how to thirst for You How to bless the very sun that warms our face If You never send us rain Daily bread, give us daily bread Bless our bodies, keep our children fed Fill our cups, then fill them up again tonight Wrap us up and warm us through Tucked away beneath our sturdy roofs Let us slumber safe from danger’s view this time Or maybe not, not today Maybe You’ll provide in other ways And if that’s the case … We’ll give thanks to You with gratitude A lesson learned to hunger after You That a starry sky offers a better view If no roof is overhead And if we never taste that bread Oh, the differences that often are between Everything we want and what we really need So grant us peace, Jesus, grant us peace Move our hearts to hear a single beat Between alibis and enemies tonight Or maybe not, not today Peace might be another world away And if that’s the case … We’ll give thanks to You with gratitude For lessons learned in how to trust in You That we are blessd beyond what we could ever dream In abundance or in need And if You never grant us peace … But, Jesus, would You please …