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. ūüôā We are getting married in the spring, and we couldn’t be more excited.

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

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

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

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

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

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

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

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

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

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

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

Love to you all.

Gifts, grace & gratitude

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

Look at our faith.

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

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

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

This is the beauty of grace.

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

2012 Lifebanc Gift of Life Walk & Run

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

Full of love and gratitude,
Amanda

Leaving a legacy

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

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

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

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

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

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

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

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

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

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

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

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

2012 Gift of Life Walk & Run

I need your support!

Have you ever been touched by organ donation? ¬†If my family or I have ever inspired you, helped you, or just made your life a little better, then you have. ¬†Perhaps you don’t know me that well, but you know someone else who has been blessed by organ donation. ¬†Please support me in my 3rd annual Team Race for Amanda walk/run benefitting Lifebanc, Northeast Ohio’s organ donation/procurement agency. ¬†I am so passionate about this non-profit organization that I volunteer my time and effort to join them in educating about, fundraising for, and advocating organ donation.

This year, the walk is on Saturday, August 11. ¬†This is such a fun event, and it couldn’t be for a better cause. ¬†This is one of my favorite days of the year for so many reasons. ¬†Please join us and see why. ¬†I promise you’ll feel inspired, uplifted, and fulfilled.

Last year due to my splenectomy, I wasn’t able to crusade for this as I did for our team’s first year. ¬†I also believe people weren’t as supportive because unlike the previous year, I wasn’t waiting on a liver to save my life. ¬†But each day, I am most definitely not¬†less grateful for this gift of life. ¬†My gratitude only grows deeper and deeper with all of the experiences my life has been full of since September 1, 2010. I am so grateful to be alive, and my heart aches for the 18 people who die daily waiting for an organ.

All of my team members (and only MY team members!) will be entered to win 2 Cleveland Indians tickets if registered by July 1. (The game is July 8.) I love you each and every one of you and appreciate your support in this.  Your sacrifice to support organ donation Рthe reason I am alive today is in the deepest place of my heart, more than words could ever convey.

Also new this year will be¬†Team Race for Amanda t-shirts! ¬†Yes, that’s right. Be excited!! They will be made if I have to fund them myself. ¬†(Hopefully it doesn’t come to that…!) ¬†All team members will receive one to wear the day of the event in addition to an event tshirt from Lifebanc.

Below is a video about Lifebanc, followed by a video of our race last year. ¬†To read about my story and to sign up for my team or make a donation, please visit my team page.¬† The last video below is one that was made two years ago, while I was waiting for my organ and rallying a team for this event. ¬†It’s amazing to think of how far I’ve come. ¬†Again, there just aren’t enough words.

In the coming weeks, I will be posting a new video (if I conquer the iMovie vs. Amanda feud), photos, and more information to build excitement about this wonderful celebration.

Please sign up by July 1 because I’m excited to give these tickets away! ¬†(If you sign up or donate post-July 1, you are still more than welcome! ¬†You will just miss the ticket raffle.)

Baby

I work with children on a daily basis. Little children – babies, toddlers, a few preschoolers. And they’re my world. If you know me at all, you probably know that.
And soon, I want to specialize in pediatric nursing not only because I love kids but because I was once a “sick kid” and know what that’s like all too well. I know what I went through, and I know what my parents went through with me.
Another family walked in our shoes not too long ago…
Some of you may remember that part of my liver went to a 3 month old baby. Livers regenerate, so sometimes they can save two lives with one liver
But that’s just the thing.
My life was saved, but was the baby’s?
I will never know, and that’s hard.
I contacted Lifebanc’s bereavement department and was surprised to find out a “yes” or “no” is considered confidential information, even if I have no idea who this child is, where he or she is from, or even her gender.
I will never know if the tiny person sharing my blood, his [my donor’s] blood, is even alive. I will never meet my little transplant brother or sister. I wouldn’t even know if he or she was sitting beside us in story time or in the stroller next to us at the zoo. He would be turning 2 right about now, and I hope and pray to God that his tiny body was able to fight through the surgery and recovery to make it this far.
If not, my heart is shattered for his parents, for her family.
But I like to think she is toddling around somewhere dragging a doll beside her or just getting up from her afternoon nap with sleepy eyes and messy hair. Sometimes it’s the littlest fighters who come out the strongest.
I hope she is able to wear a sparkly birthday hat and eat a big cupcake while her parents smile and thank God for the same teenage boy who gave me his liver, too.
What a gift.

Give the Gift of Life

In honor of April, Donate Life Month, I wrote a Letter to the Editor to the Akron Beacon Journal.  They published it on April 15, 2012.  It states:

Give the Gift of Life

As April is Donate Life month, I would like to thank the family that provided me with the greatest gift of all, the gift of life. Nineteen months ago, at age 23, I was given a new liver by an organ donor. Because of this generous gift, I have been able to return to nursing school, volunteer for Lifebanc (our area’s organ donation and procurement agency) and travel to Ireland to study health care.

I have truly learned the value of each day and have a new outlook on life. I am filled with joy and gratitude.

There is a critical organ shortage in Northeast Ohio and across the United States. My hope is that more people will join the Ohio Donor Registry at www.lifebanc.org or call 216-752-5433, 1-888-558-5433. Organ donation is the one unselfish gift that can save eight lives. My family is very grateful for the donor who saved mine, and I can now live a full, healthy life because of that single gift.

Amanda Goodwin

Munroe Falls

I hope that helped to raise a little bit of awareness of what one decision did for my life and has done for hundreds of thousands of other people’s lives as well.

Amanda

It’s DONATE LIFE Month!

It’s April, DONATE LIFE Month! ¬†Look where I am now after receiving a new liver. ¬†113,742 people are waiting RIGHT NOW for a life-saving transplant. ¬†If a transplant weren’t their last option, their only hope? ¬†They would not be on that list. ¬†It’s a scary list to be on, with death so close, yet hope on the other side. ¬†Sadly, a lot of those people will not see hope. ¬†They will die waiting on an organ because there just aren’t enough to go around. ¬†Will you sign up to be an organ donor? ¬†You can register here¬†and if you have any questions or inhibitions, please check out these page of truths regarding organ donation¬†or send me an email at agoodwin2010 (at) gmail (dot) com

113,742… what if one of those people were in your family? ¬†One of those people was me… just 19 months ago. ¬†What if my donor hadn’t have decided to donate his organs once he was gone ? What if his family hadn’t have thought it was a good idea because they had unanswered questions or were uncomfortable with the subject? ¬†I don’t know where I’d be today.

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital; busily occupied with the living and the dying. At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped. 

When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my deathbed. Let it be called the bed of life, and let my body be taken from it to help others lead fuller lives.¬†

Give my sight to the man who has never seen a sunrise, a baby’s face or love in the eyes of a woman.¬†

Give my heart to a person whose own heart has caused nothing but endless days of pain. 

Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play. 

Give my kidneys to the one who depends on a machine to exist from week to week. 

Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk. 

Explore every corner of my brain. 

Take my cells, if necessary, and let them grow so that, someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window. 

Burn what is left of me and scatter the ashes to the winds to help the flowers grow. 

If you must bury something, let it be my faults, my weakness and all prejudice against my fellow man. 

Give my sins to the devil. 

Give my soul to God.

If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever. 

To Remember Me; Robert N. Test