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.

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 …

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

Wait.

Before I leave for Europe, I want to to leave you with this. I found this today, and apparently I posted it somewhere else Рjust months before I found out I needed a liver transplant.  Today, these words ring so much truer today than when I posted them before.  This is for me and you, everyone out there who is tired of waiting, feels it will never end, and is frustrated trying to see the purpose.

Oh what I have learned in the waiting…

Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pled and I wept for a clue to my fate . . .
And the Master so gently said, “Wait.”¬†

Wait? you say wait? my indignant reply.
Lord, I need answers, I need to know why!
Is your hand shortened? Or have you not heard?
By faith I have asked, and I’m claiming your Word.¬†

My future and all to which I relate
Hangs in the balance, and you tell me to wait?
I’m needing a ‘yes’, a go-ahead sign,
Or even a ‘no’ to which I can resign.

You promised, dear Lord, that if we believe,
We need but to ask, and we shall receive.
And Lord I’ve been asking, and this is my cry:
I’m weary of asking! I need a reply.”¬†

Then quietly, softly, I learned of my fate,
As my Master replied again, “Wait.”
So I slumped in my chair, defeated and taut,
And grumbled to God, “So, I’m waiting for¬†what?”¬†

He seemed then to kneel, and His eyes met with mine . . .
and He tenderly said, “I could give you a sign.
I could shake the heavens and darken the sun.
I could raise the dead and cause mountains to run.

I could give all you seek and pleased you would be.
You’d have what you want, but you wouldn’t know Me.¬†
You’d not know the¬†depth of my love¬†for each saint.
You’d not know the¬†power¬†that I give to the faint.

You’d not learn to¬†see through clouds of despair;
You’d not learn to¬†trust¬†just by knowing I’m there.
You’d not know the¬†joy¬†of¬†resting¬†in Me
When darkness and silence are all you can see.

You’d never experience the¬†fullness of love
When the peace of My spirit descends like a dove.
You would know that I give, and I save, for a start,
But you’d¬†not know the depth of the beat of My heart.

The glow of my comfort late into the night,
The faith that I give when you walk without sight.
The depth that’s beyond¬†getting just what you ask
From an infinite God who makes what you have last.

You’d never know, should your pain quickly flee,
What it means that My grace is sufficient for thee.

Yes, your dearest dreams overnight would come true,
But, oh, the¬†loss, if you missed what I’m¬†doing in you.

So, be silent, my child, and in time you will see
That the greatest of gifts is to truly know me.
And though oft My answers seem terribly late,
My most precious answer of all is still . . . Wait.

Russell Kelfer, 1980

Thank you to my precious donor family, whoever and wherever you are, for choosing to give the gift of life.  Because of you and your sweet son, I am fulfilling my dreams all around the world.  My heart is swollen with gratitude; I could never find the words to express it.

All happiness

“If anyone would tell you the shortest, surest way to all happiness
and all perfection, he must tell you to
make a rule to yourself to thank and praise God for everything
that happens to you.

It is certain that whatever seeming calamity happens to you,
if you thank and praise God for it,
you turn it into a blessing.

If you could work miracles,
therefore, you could not do more for yourself
than by this thankful spirit.

It heals and turns all that it touches into happiness.‚ÄĚ

Р William Law in A Serious Call to a Devout and Holy Life

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

Praise God from whom all blessings flow

I’m at a loss for words.

How do I express how grateful I am for all I’ve been given?

How do I even begin to say how thankful I am for another year of life despite so many threatening obstacles?

Feeling gratitude and not expressing it is like wrapping a present and not giving it.
– William Arthur Ward

Here’s my most honest attempt…

I’m grateful to a family who chose to give life after they lost a life. I’m grateful I woke up each time I went under anesthesia this year. I’m grateful for this family I’ve been given, these friends I’ve been blessed with, these days that fly by too quickly because they’re so full of joy.

Each moment I have is a gift. Each breath, each day… I’m so blessed.

I’m grateful for all of your support and love through the past year and a half. I’m grateful I get to spend today and this weekend with those I love.

I’m thankful I have a guardian angel and have been brought through some things this year that could have been ended up so much worse.

I’m so thankful for providence.

I’m just overwhelmed with emotion when I think of what I have been given. These gifts – physical life, eternal life, relationships, material possessions.

Praise God from whom all blessings flow!

Happy Thanksgiving. Savor this day and these moments.

Love,
Amanda

Threats

My Christmas Tree

I packed my hospital bags today‚Ķ My “day bag” for Thursday’s biopsy/testing as well as my “long stay” bag just in case.

I’ve been through the ups and downs of illness for so many years that I’ve learned to have hope while always being prepared.¬† Both are key.

As I explained in my last post, my body is rejecting my new liver.¬† This could be minor, or it could be a big deal.¬† We won’t know until Thursday.

In an attempt to solve the problem, last week, my doctors added an anti-rejection med that they had previously taken me off of due to side effects.¬† Apparently, it isn’t working as my labs on Monday came back worse than before.¬† We are looking for clues on Thursday, despite the fact that one of my lab values might interfere with getting the biopsy done in the first place.¬† My INR, which measures blood clotting, is 1.5, and above 1.5, the surgeons won’t do the biopsy. Liver disease affects INR values, which is quite possibly why mine has risen.

I was doing great just over a month or so ago.¬† I was finally feeling energetic after my surgery, and I was impressed how well I felt – better than ever in my life!¬† Then slowly, I started feeling fatigued.¬† Next, I was taking 2 naps/day, reminiscent of my life with liver disease.¬† My abdomen started swelling, and I found petechiae (tiny broken blood vessels) on my skin, again, symptoms of liver disease, symptoms I had almost forgotten about since my transplant. Then I experienced itching, the hallmark of liver disease.¬† I knew something was wrong, but I couldn’t figure out what.

When my transplant coordinator called me and told me how high my liver enzymes were and how all signs indicated rejection, I knew.  And these symptoms still plague me even as we are trying to properly diagnose the problem and treat it most efficiently.

The disease I had been miraculously saved from just a few months ago, is now apparent again every day of my life.¬† I know it’s not the same disease – only symptoms of an aggravated liver – but it’s still frightening.

I finally got a new lease on life, a chance to be healthy, a chance to live a normal life.  I fought back from a treacherous surgery as a brand new life dangled in front of my eyes.  I had more energy, clearer thinking, and set up plans for my encouraging future.  Then in an instant, nothing was certain.  Nothing is certain.

Will I be well enough to resume school in less than 2 weeks after all I’ve fought through to maintain my standing?¬† Will the rejection really go away?¬† My team and transplant friends say rejection is common in the first year post-transplant, and it’s usually treatable, but this still feels wrong. ¬†

Who gave me this gift of a new life – only to threaten taking it from me?

So what are the treatment options?¬† If it’s minor rejection, I will get oral steroids at home or a few doses of IV steroids in the hospital.¬† If my body goes out of control and the IV steroids don’t work, I will stay in the hospital so the doctors can treat me carefully until my labs become stable.¬† Additionally, the longer my enzymes are elevated up, the bigger risk to my liver it is.

I feel violated, afraid, and unsure.¬† I’m anxious and reaching a point where I’m tired of pretending everything is still fine.¬† I absolutely love the holidays, and this year I’ve tried to enjoy them because I have so much more to be grateful for, but this rejection issue has remained in the back of my mind throughout.¬† Tomorrow night is my big, annual Christmas party, and while preparation has been taxing on my weak body, I’m mentally exhausted as well.¬† The fear is so present.¬† Plus, it will be a late night with lots of people to be happy for.¬† I try to portray a picture of health and gratitude as always, and you all know how much I adore my loved ones, but with all this uncertainty, it’s so hard.¬† Even my favorite things are becoming hard.¬† I guess it’s not the first time.

Please pray for grace, peace, and courage.  Pray for good results and quick healing.  Hug your loved ones and be grateful you have them.  I know my mind can go a little out of control, but my worst fear is not being around anymore.  Since I love life more than some people, I feel I deserve it the most.  Is that so wrong?  If only people could realize what they have.

Thanks for sticking around.  I love you all so much.

Amanda

PS – The photo above is of my Christmas tree. ¬†My mom lets me put it in our dining room since it won’t fit in my bedroom. ¬†It’s pink, of course, and I keep only pink/white/silver/neutral ornaments on it. ¬†A lot of my ornaments have very special meaning, and I take great pride in making it pretty every year! ¬†Just wanted to share it with you, my dear friends. ūüôā

Good News

In preparing for my 3-month-scan and labs to make sure the tumor that triggered my transplant hadn’t returned, I found two journal articles.¬† (Yes, I’m a nursing student who has a penchant for research.)¬† I read Getting a Handle on Posttransplant Recurrence of HCC and Adjuvant Treatment After Orthotopic Liver Transplantation: Is It Really Necessary?, the second of which I noticed was co-written by the surgeon who performed my transplant.¬† Very cool.¬† And regarding my labs, I wasn’t exactly sure what “tumor markers” were, so I brushed up at the National Cancer Institute.

My own personal conclusion was that I had/have a low recurrence rate due to the characteristics of my tumor.  That calmed my nerves, so we were off to a good start.

This morning I had my CAT scan followed by labs to screen for “tumor markers.”¬† If you’re interested in medicine, check the link above.¬† If not, suffice it to say they’re something in your blood that can signal whether or not there is a tumor present in your body. ¬†

By afternoon, most of the scans had been read and the conclusions of 3 surgeons were this: (And yes, this was complete news to me.)¬† No where in any of my tests, labs, reports, etc. did it ever say the tumor (which was found in May) was definitely cancer.¬† Due to the location of the tumor, it could not be biopsied and diagnosed as cancerous or benign.¬† Therefore, it was assumed to be cancerous, specifically hepatocellular carcinoma to err on the side of caution.¬† Remember, it was never in fact proven.¬† In June, I received chemoembolization, chemo directly targeted at the tumor and not the rest of my body.¬† When my old liver was removed September 1, some lymph nodes were screened for cancer, and none was found.¬† To sum all of that up, my tumor may have been completely benign.¬†¬†Yes, it may have been cancerous, and the chemo may have just cured it.¬†But the catch is this,¬†chemoembolization is rarely successful with just one treatment.¬†¬†We will never know which the tumor was, so even if I am at risk of recurrence or any kind of cancer coming back, it’s a very small risk.¬† Because it may not have ever been there.

That was a lot to take in while it was a relief as well.¬† The day after I had the scan that found the tumor, my doctor said it was cancer.¬† It would have been nice to know that she wasn’t sure and had no way of knowing from the location of the tumor.

But I digress.

The scans today were completely clean, and because of that and the realization the tumor likely was not ever cancerous, I’m now off the protocol treatment and don’t have to get scanned for another 6 months, then every year for 5 years.¬† That’s a lot better than 3x/year for 5 years.¬† And it’s so much better to know that the tumor wasn’t positively cancer. ¬†They can never say never since nothing was proven or tested either way, but the tumor was likely¬†non-cancerous.

Sigh of relief.

So God is good, and while we don’t have answers to a lot of things, I really do believe that everything happens for a reason and works out for good. ¬†Somehow I beginning to believe the people who say I’m a walking miracle.

Thank you for your prayers, Tweets, comments, emails, texts… I felt so supported and at peace today.

Love always,
Amanda

PS – My WBC and platelets are still low (we’re watching them to see what might be the cause) but my liver numbers are all¬†perfect. ¬†I don’t know if they’ve ever been perfect. ¬†So grateful.

3 Month Update & A Prayer Request

Hi everyone,

Just a little update and a prayer request below.

I’m doing so great.¬† It’s been 3 months since my surgery, and I can’t help but reflect on where I’ve been.¬† Thinking back on my life with liver disease, waiting for the transplant, the surgery, the pain and horror, the blessings and overcoming‚Ķ I’m still taking it all in.¬† Every time I see the huge scar on my abdomen, I want to complain and wish it gone, but then I remember it’s a symbol of where I’ve been and the story I have to share with the world.¬† This story, this journey, is not just about the 12” of scar I have going in 3 directions – it’s entwined into every part of my being.

Yes, of course there have been setbacks, but I’m used to them.¬† Not too much phases me anymore.¬† I’m grateful for this new peace I have.¬† Whatever comes, comes.¬† I think I finally understand the resilience you see in people who face huge trials.¬† Once you’ve been through so much, you are accustomed to fighting, struggling, and don’t fear the future.¬† You’re so thankful for the calm times but aren’t worried about the storms. After all, if you’ve already been through the worst, how bad could the future be?

This week, one of the surgeons officially cleared me to resume nursing school in January, so barring any complications with the College of Nursing, I’m good to go.¬† I’m so excited to dive back into what I love so much, with more compassion than ever.¬† I have some fears like “What if I forgot it all?” “What if I haven’t recovered enough?” but my heart knows it’ll be just fine.

Wednesday is a big day for me.¬† It’s time for my 3-month-scan to make sure the tumor hasn’t returned.¬† If you remember, I was diagnosed with Primary sclerosing cholangitis (liver disease) at age 5, and I was transplanted because it turned into a tumor in May of this year.¬† Chemoembolization eradicated the tumor.¬† While the pathology reports on my old liver and lymph nodes showed there were no signs of cancer, as a precaution, I have to have scans and special labs done every 3 months for the next 5 years just to make sure it hasn’t come back.¬† From what I understand, it’s just a contrast MRI (which I’m used to) as well as testing for “tumor markers” in my blood.¬† I really don’t know that much about it, but of course, I’m eager to learn.¬† I’m honestly a little scared about it simply because I don’t want to go through all of this again.¬† Please join me in praying the tumor is gone for good and that I continue to recover quickly.

I love you all, and please remember to take time to be grateful for life during this busy, stressful season.

Amanda