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!!

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This journey…

As some of you know, I (finally) graduated in August after 9 years in college.  And as some of you also know, for all of those years, I fought and fought to get ahead despite my many health challenges.  I had to take a year off after a car accident, another year off after my liver transplant, and semesters off for my subsequent abdominal surgeries.

I began college in 2005 pursuing my nursing degree at Kent State.  I excelled and felt like I had found my calling.  I can’t even describe how I felt when caring for my patients.  It gratified my soul so deeply knowing I was able to give back to people in need, encourage them, or help them through a hard time.  I earned high grades in a rough, competitive program and made friends with my instructors.  It sounds like the perfect story, right?

Well, I was still battling a life-threatening liver disease.  I could barely make it through an 8 hour clinical shift without feeling like my body was going to fall apart.  The work was very physical, and it set off my fibromyalgia and arthritis pain in the worst way imaginable.  The stress of a, well, high-stress program wore me thin.  24-7, I was either sleeping, studying, or in class/clinical, even in the summer.  My body suffered so much during these years, and I believe it sustained permanent damage from me not listening to it, but I was doing so well at my school work, thriving as I was being continuously challenged, and enjoying the patients so much.

Then came the tumor that randomly appeared on my liver. At the end of a very normal semester in nursing school, a routine CT scan showed it clearly.  The tumor was inoperable and in a location that made it untestable.  We were to proceed, assuming the worst: cancer.

I was quite literally told to put my entire life on hold and then fight for it.

I wasn’t ready for any of that or anything else that came that summer.  Who is?  No one is ever truly ready when these things happen.

God gave me so much peace during that summer – so dramatically noticeable that I will never be able to deny it.  However, all of the tests, the chemo… there was so much physical pain.

Then came the pinnacle of physical pain and the resumption of emotional and mental pain.  More like anguish.  The surgery caused the absolute worst pain – pain, after 18 years of liver disease, that I never even knew was possible.  I had to learn to eat again, walk again, go up stairs again.  Every muscle in my abdomen had been cut through, and I became quite skilled at protecting my excruciating abdomen where 50 staples once lived.   I had to learn to live with an even more fragile immune system than I had before.  The first 6 months, for these reasons and more, were torture.  If it weren’t for the outpouring of love and support from so many people and the knowledge that a young man died so I could live, I don’t know if I could have gotten through it.

After living like that for awhile, you are pretty much begging for life to go back to normal.  My doctors advised me to take one year off of school to completely recover, but I, Ms. Type A, was determined I was going to return to school for spring semester, 2011, barely 4.5 months after my surgery.

As I was told, I crashed and burned.  So that semester never really amounted to anything even though I tried.

Around that time, I saw my infectious disease doctor.  These doctors specialize in keeping transplant patients (who are immunocompromised) safe from any type of communicable (contagious/transmittable) illness and are highly trained in what they do.  My doctor told me, in no uncertain terms, that nursing school was not an option with my new immune system.  I began taking anti-rejection medications to prevent my body from rejecting my new organ, and as a result, the medications suppressed my immune system.  She told me I would catch anything my patients had and even basic illnesses could turn into “worst case scenarios” with my immune system.  (Which last month, we found to be true – blog post coming up soon.)  I had some acceptance issues so for the time being, she wrote a letter for me to be excused from seeing any patients with communicable illnesses.  Even without contagious patients, being in a hospital a couple days a week, I knew I was walking on thin ice.  Germs are everywhere in hospitals, and anyone working in one leaves covered in a multitude of bacteria.

I proceeded like this for awhile until I eventually was able to get to a point of acceptance and heed my doctor’s advice. It was a long, emotionally difficult process for me.

The end of my nursing career was more of a move out of desperation and the realization that I had ZERO options left.  I could not even begin to tell you the options I tried – I was like a crazy person looking into everything and consulting everyone I could trying to fit a square peg in a round hole.

Even if I could get through school, any job I took would require me being with sick patients.  If I wanted a job on a “not sick” unit such as case management, I would need 2 years of experience on a typical unit with sick patients.  I had literally exhausted all options when I, myself exhausted, heard about a newer college at Kent State – the College of Public Health.  The rest is history.

In an effort to publicize their growing online options, Kent State has been interviewing students with unique experiences who ended up being successful with online-only baccalaureate programs.  An employee interviewed me and wrote up an article, and it hit a major Cleveland news station today.  Go ahead and check it out to see how the story ended, or rather, continued.

I hope that my story first of all, provides someone with hope, that they, too, can overcome any struggle and end up successful and happy.  I don’t believe the “you can accomplish everything you put your mind to” myth.  What’s best for you is all that will work out. Each of us is incapable of doing certain things well, and perhaps this is God’s way of letting us find our true calling using our individual genuine gifts.  I believe we need to try our hardest and fight for what we want to achieve, but when that’s not possible and we have truly exhausted all options, we need to know when to stop and fight for a new dream, always believing a Higher Power is orchestrating something greater than we could ever know.

Secondly, I hope that this story honors my donor.   Someone lost their teenage son, and solely because of that tragedy, I’m alive to tell my story, his story.  It’s my highest honor.

None of this is without extreme gratitude and humility.  I have done none of this on my own but faced each day at a time and fought for my life, both literally and figuratively.  I owe every bit of this to God, my donor, my super supportive friends and family, my amazing transplant surgeon, Dr. Eghtesad, and world-class team of doctors at the Cleveland Clinic, the deans and instructors at the KSU College of Public Health, and the enormous support of the Student Accessibility Services on campus.

As seen on WKYC:

Amanda

Liver transplant patient completes Kent State degree

She completed almost three years of nursing school when doctors said it was time for a liver transplant.

AKRON, Ohio — Amanda Goodwin of Akron, Ohio, is no stranger to adversity. When she was 5 years old, she was diagnosed with a progressive liver disease that would eventually require a liver transplant.

In May 2010, she had completed almost three years of nursing school and was doing really well when doctors discovered a tumor and said it was time for a transplant.

“My doctors advised me to not move forward in nursing because I was so susceptible to possible infections due to an immunosuppressant drug I had to begin taking,” Goodwin explained. “That wasn’t easy to hear.”

Despite having to take nearly a year off to recuperate, Goodwin still wanted to finish a degree from Kent State University.

“So I was looking at my options, and I heard that Kent State’s College of Public Health offered a number of online options,” Goodwin said. “I thought that would be perfect for me because I was recovering and actually required two more abdominal surgeries. I couldn’t attend classes regularly, but I was still interested in pursuing a degree in healthcare. So I decided to transfer to a public health program at Kent State because it’s all online and if I needed help, campus was only 15 minutes away.”

Despite her health issues, Goodwin participated in a two-week intensive course in Geneva, Switzerland, in May 2013. Ken Slenkovich, assistant dean of Kent State’s College of Public Health, led the trip.

“During the trip to Geneva, I got to know Assistant Dean Slenkovich, and he was nothing but supportive though everything,” Goodwin said. “Throughout my time in the College of Public Health, everyone on his staff worked closely with me, even when I had health setbacks.”

Slenkovich was immediately impressed with Goodwin.

“The trip afforded me the time to spend with her, and I found her to be a delightful and bright young lady,” Slenkovich said. “She’s very passionate about public health and wants to apply her knowledge to help people.”

“I’m healthier now,” Goodwin said with a laugh. “And I’m happy to say I graduated last August.”

Goodwin, who graduated with a Bachelor of Science in Public Health with a concentration in health promotion and education, is enthusiastic when talking about taking classes online.

“I loved the public health online program,” Goodwin said. “I loved every class I took. I focused my studies on health education and promotion, and I really thrived. Everything was so organized. The notes were there, the videos were there, the links – everything.”

Given her occasionally uneven stamina during her recovery, Goodwin loved the ability to work on her classes on her own schedule.

“I was able to maintain my grades and do it on my time,” she said “I’m so glad I found that program because otherwise I don’t know what I would be doing right now.”

She also enjoyed getting to know other students in the online program.

“I interacted with lots of other online students,” Goodwin said. “It’s funny because I didn’t meet them in person until graduation.”

Goodwin is especially pleased that she can still work in the healthcare field.

“With my degree, I feel like I can help just as many people, if not more, than I would with a nursing degree,” Goodwin said. “It’s just that it would be in a different form. I can still help people.”

As for the future, Goodwin is busy planning her wedding this spring, and she’s optimistic about the future.

“I would love to work at Lifebanc, which is Northeast Ohio’s organ donation and procurement agency,” Goodwin said. “That would be my dream job. I may have an opportunity to complete a master’s degree, so that might be in my future.”

Kent State is a leader in the state and the nation in offering online courses and degrees. Since 2009, online enrollment at Kent State has grown 900 percent, and the number of online instructors at Kent State has grown from 86 to more than 600.

Kent State’s College of Public Health was established in 2009 to educate and train students to meet the current and projected shortage of public health professionals in Ohio and the nation. It is one of only two colleges of public health in Ohio and the first to offer a Bachelor of Science in Public Health. Its academic programs integrate theory and practice to equip graduates with the knowledge and skills to address the health challenges of the 21st century.

Photo credit: Stephanie Doyle

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.

Reconstructive surgery

The time has come.  As I’m nearing 3 years post-transplant and my incision has been cut open wide twice now, my transplant surgeon and the head of plastics/reconstructive surgery at the Cleveland Clinic have agreed to flip the green light on fixing the atrocity that has become my abdomen.  As some of you know, it was badly infected after my first surgery, so the second surgeon tried to close it to look better when he was done, but there really wasn’t much to make a large difference without gutting the whole thing and starting new.  So that’s what we’re doing at the end of the summer.

Yes, we are gutting my stomach just like a kitchen, ripping out the old, putting up the clean and new. I don’t think this journey will be a fun one, especially as I’m not required to do it.  You just go along with show when your life doesn’t have a chance.  But this is 100% my choice.

I’ve looked forward to this day for so long, but now that it’s here, I’m not sure if I want it.

You see, my stomach boldly shows all of my battle scars.  The staples, stitches, tubes, and drains.  I trace them when I’m falling asleep sometimes.  They are the only proof of my story, the only souvenir these past years of hell have left me with.  I don’t like what it is, but I like the idea of having it.  I’ve come to learn to ignore it pretty well and have long stopped getting sick every time I get out of the shower and have to look at it.  It’s a nuisance and affects my clothes and my posture, and it’s not pretty, so you’d think the decision would be easy.  But all 90 gashes surrounding my bold Mercedes-Benz logo, and each big bump where a tube or drain once fell from… they each so fully tell my story.  The agony, the pain, and the rising again.  It’s very symbolic to me. [Every time I say Mercedes-Benz I think of my friend Jenn S. who said, “Well at least it’s not a Hyundai.” #transplantfunny]

I will follow-through, but I’m sharing my mental process here as I know a lot of us are being transplanted younger and younger, these things are becoming issues.  I have no indication that this surgery for this reason has ever been done before, so if you feel like me and hope  someone has had good results from this , then I’m happy you’re here reading along.  I pray my experiences partially influence the future of transplants where you soon won’t have to look like you’ve had a near-death experience from the lines and grooves of your abdomen.  The memories are bad enough in my mind.  I don’t need them tattooed all over my skin.

In recent news: Liver Preserver Holds Promise for Transplant Patients

Saw this in the Wall Street Journal, Weekend Edition March 16-17, 2013.

Liver Preserver Holds Promise for Transplant Patients

Scientists from Britain’s Oxford University have invented a device that preserves human livers outside the body for up to 24 hours, an advance that could potentially make more of the organs available for transplant at a time when demand is climbing.

This has huge potential.  The future of medicine is so exciting for transplant patients.

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.