Dealing with our cup this Christmas

When Jesus was on the eve of his vile crucifixion, he pleaded to the Lord in the Garden of Gethsamane that if it was not to be the Lord’s will, could God would remove this cup from him? (Matthew 26)

We all know how the story goes. Jesus was indeed crucified and arose again bringing us eternal life. The treachery – so horrendous that God himself had to turn his face to bear it (Matthew 27) – was part of the plan all along.  Look at how the world changed after that day. And for the better! Christ’s suffering saved mankind forevermore. In hindsight, of course it’s 20/20. Jesus can look back and know why he endured the fire. And would he do it again? I’m sure.

The same has happened to me in some of the hardest times of my life. I can go back over my life with illness and the horror of the liver transplant and what recovery meant from that. I can viscerally feel the pain start to creep back in. That was one of a few periods in my life where I knew I was fighting to get through each and every moment. But looking back and knowing how my story has blessed and encouraged others, and reviewing how much strength, compassion, empathy, wisdom, and patience that God was able to reveal in my life, I now see that it was all worth it. 

How many times has God allowed us to endure trials by handing us our portion and our cup while we know full and clear that it contains what will lead to pain and suffering. I’m thankful that I now realize that these times bring us strength, but they definitely aren’t easy to endure. The outcome is always greater than the pain of the battle.

Infertility is our portion and our cup this Christmas. Nothing will change that, and I can only hope that we come out stronger in the end. I’ve had a hard time hoping lately, and I’ve been so afraid that this Christmas wouldn’t be “enough.” We are missing pieces of our hearts that feel bigger than ourselves. 

I turned to one of my favorite authors and leaders, Ann Voskamp. I love her blog post, “when you’re weary and want to prepare your heart for Christmas & a little bit of hope.”

Go ahead and read it. This, my friends is why we hope. As Ann writes, she reminds us, “If you don’t let your heart prepare Hope room — it’s your own house that comes crashing down” and then, “There’s a hope waiting right up ahead right now for you in the dark.”

Hope is everything. We have to keep it present and burning even when it’s hard to believe in it.

 I found this post today, and it gave me exactly what I needed. “The Christmas Edition: Only the Good Stuff.”

…these disappointments we can’t even talk about —

they might just go ahead & try to make us bitter,

and these banged up expectations of ours,

of all that we had expected things would look like — but don’t — might keep on trying to make us guarded & hard…

and the dreams we can’t even tell anybody about, but feel pretty bruised right about now, they might be trying to convince us to just give up… we can feel You touch us, how You lift our chins slow, how You speak right into us:

“I know what I’m doing. I have it all planned out—plans to take care of you, not abandon you, plans to give you the future you hope for.” Jer. 29:11MSG

And Your Word touches us. Touches us like a gentle salve tonight in the sorest places… And we feel it: Hope is the salve that keeps our broken hearts soft.

Believe it: When you can’t touch bottom is when you touch the depths of God.

Isn’t that all there really is to know? He knows. He’s been there, and He had given us more than enough hope to carry on. 

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Upside Down

This post has taken me three months to write, and I’m hoping it is cathartic for me. There is so much on my heart and in my soul.

I’m a huge believer that life can change in the shortest instant. 

For example: In 2010, I came home from an amazing vacation on a Sunday, got a routine CAT Scan done on Monday, and on Tuesday, I was told by my doctor of 10+ years that I had a tumor on my liver and needed a transplant. Approximately 3 months later, my life was forever changed. For better and for worse.

One July night in 2013, I met Scott. By the end of the evening, we both knew we were soulmates. We kept our thoughts to ourselves for months (even a year?), but inside we both knew.  By midnight that evening, I was just sure God had created him just to be my other half and for both of us to travel through life together.

Then came December 31, 2015. I am not privy to share all of the details, but a distracted driver ran a red light, totaled my car, and in a way, he totaled my body as well. Police officers and firefighters told my family that it was a miracle I ended up alive after what happened merely in a matter of seconds. On that day, I had no idea what was to come. As time progressed, we learned I had obtained several severe health problems. The past few months have been horribly hard, painful, and full of discoveries of new issues. I’ve missed out on so many activities, hobbies, you name it. I’ve been frustrated pretty constantly and home bound for weeks at a time. I’ve experienced the greatest pain of my life – far greater than the pain after a liver transplant which I thought could never be beat.

I’m so thankful for my husband and my mother who have constantly changed their plans to selflessly help me with all of my needs. So many people have sent cards, food, gift baskets, and graciously shared their time to visit, drive me to appointments, and give me grace where I’ve fallen short.

Currently our lives have been turned upside down, and none of this has been easy to say the least, but my family and I thank you for all of the love you’ve shared and the prayers you’ve sent up for me. You’ve given us (especially me) so much encouragement for this rough journey and whatever lies ahead.

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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Genetics

I didn’t particularly enjoy Genetics class in college, but it was interesting, and the material was very relevant to not only being a nurse but being a human.

Last week, I revisited the subject with a genetic specialist at the Cleveland Clinic.  With my sister’s impending wedding, I decided it was time to bite the bullet and go figure out if the liver disease was anything that would now run in our family.  I’ve seen what Primary sclerosing cholangitis can do to a person, to a life, and I’ve seen what it can do to a family.  I wouldn’t wish this upon anyone, God forbid my nieces or nephews, my sons or daughters.  I’d rather die than watch this play out in the life of someone I love, and whether true or not, I would blame myself.

I’ve been dreading the answer to this question for years, so my sweet friend Lauren insisted she go with me to the appointment just in case the news wasn’t good.  I was so impressed with the doctor, Dr. Rocio Moran.  Waiting months to get in to see her was worth it.  She had read up on my history beforehand (even “Part 2” of my paper chart!) and knew exactly what PSC was.  I had done research myself and knew that PSC was a mystery to geneticists. 

Doctors and scientists currently believe it is partially caused by a gene, or genes, but the gene/s must be turned on by an unknown environmental factor.  That doesn’t provide any answers to anyone.  PSC has been seen to run in families, but the cases are extremely rare.  More often than not, it comes out of no where (like in my case) with no relation to liver disease in anyone else.  It usually accompanies ulcerative colitis, which I had as a child but have been confirmed not to have anymore.  (Which statistically never happens.  We thank God for a miracle!)  Additionally, the majority of people with PSC have the cystic fibrosis gene, but having the CF gene does not mean you have the disease.  (CF is a serious, life-threatening lung disease that often cuts its victims lives extremely short.)  A huge percentage of people carry the CF genes, but a person can only get CF if both of their parents carry the gene.  There is a 25% chance they will have it only if both parents have the gene.  Relatively, that’s a very high risk.  I’m going to get tested for that just in case, but if it comes out positive, it just means whoever I decide to have children with needs to be tested as well.

So for PSC… If it was caused by a single gene, which we do not know for sure, then my children will have a 50% chance of getting it.  However, that is not reality.  PSC is rarely seen to run in families.  As for my sister, the chance her children will have it is less than 1%. 

I was disappointed that I did not receive any real answers, but I was excited that Dr. Moran told me about a research study that Mayo Clinic has been working on for over a decade.  It’s called PROGRESS – PSC Resource of Genetic Risk, Environment & Synergy Studies.  To participate, volunteers with PSC must answer some questions and submit a blood test.  Their DNA is obtained from the blood sample and “frozen in time” so the researchers can analyze and compare everyone’s DNA, looking for any commonalities.  I eagerly volunteered for the study as soon as I got home from my appointment with Dr. Moran.  I’m hopeful that one day, there will be answers about this terrible disease.  There will be fewer people dying of cirrhosis, fewer people enduring liver transplants.  Fewer people living with the burden of a disease with a variable and unsure prognosis, fewer people living in fear of the unknown, dealing with waking up with a chronic illness –  every. single. day.

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