- Reconstructive surgery
- In recent news: Liver Preserver Holds Promise for Transplant Patients
- Understanding Chronic Pain
- A liver for Chelsea
- Not them
- Caregivers’ Month blog carnival
- All happiness
- Giveaway Winners
Before I leave for Europe, I want to to leave you with this. I found this today, and apparently I posted it somewhere else - just 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._
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 its 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.
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.
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. _ 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.
It was a wonderful Saturday with my mentor, Rita, as we sat down for another quiet yet passionate discussion about the blessings we receive or the issues we face. Rita is special to me as she is the mother of a friend I grew up with at school since first grade, and she was my seventh grade science teacher. We had not seen each other in years, and we were purposefully matched together in a mentoring program. God had a hand in the match up as we have strikingly similar personalities, struggles, and challenges. Rita has gone through many relationship and health obstacles and has fought through everything with grace and beauty. She has much insight on suffering and living fully despite it, noticing God's blessings each step of the way. And so on this particular day, I mentioned to her how I've been in heightened realization of my physical weaknesses lately. I told her how I've felt opposition from a couple of individuals as they sometimes judge me independent of my pain and fatigue, my daily struggle to live as normal of a life as possible for a patient with fibromyalgia, chronic pain, and a past of 17 years of liver disease ending with a liver transplant and two subsequent surgeries. I bemoaned how I deeply wish they could see my point of view, how desperately hard I want them to realize what I deal with each day so they could tread more cautiously and deliberately. Of course, I meant it figuratively as in wishing they could just imagine what kind of physical and emotional pain I deal with and how my various thresholds can be so challenged at times. Pausing to choose her words and then in her gentlest voice, she said this to me.
At times, we so greatly wish for people to see where we walk, yet at the same time, we try harder to hide it from them and pray in the depths of our hearts that they will never truly know what we experience.As frustrating as it is, I am realizing it's a good thing these people cannot relate to me because to be able to fully do so, they would have had to not only journey _beside_ me through the years as they have done so diligently, but rather physically suffer through _exactly_ what I have over the years. My mind stopped immediately at this realization. I whispered intently, "I wouldn't wish this on my worst enemy." "Yes," she continued. "There are times I cannot even tell my daughter exactly what I'm going through. It would kill her to know." Oh how true. For example, I have been protecting my these loved ones, shielding them from the worst, ever since I was in elementary school. They don't know this, and I don't even want to tell them now. To hide things like this from people so close almost sounds like a punishable wrongdoing. Yet we continue on in order to protect our loved ones, and we hold our breath hoping and praying they will never go through what we have, no not possibly that. Not this. Not anyone, _but especially not them._ And so I proceed, journey on, more tolerant of their judgments, tempers, and inability to understand as _I strive to daily thank the Lord that they just can't comprehend what I've endured._ It's not easy; I will assure you of that. But when you love people, it's really the only option. May we take pleasure in our sufferings as they draw us nearer to our Lord and Him to us. He has willingly been through anything we could ever face in life just so He can truly, 100% understand what it feels like and in the meantime, guide us triumphantly to the other side.
I haven't said much lately because life has been pretty still for me. My heart has been _quiet_- there have been no major health scares and my loved ones are well. All is _quiet_ here. Yet isn't it funny how "_quiet_" and "normal" to people like me means sinus infections, shingles and its post-herpatic neuralgia, carpel tunnel, anesthesia treatments, and a few ER visits. And isn't it funny how when you're living your love, you just don't notice as much? I've spent so much time with my kids, my family, and my friends, and I've been so busy with my classes, commitments, and trying not to push my body off the deep end. But I have to give the most credit to my kids. They are the reason I get out of bed each day. They are the people who say the funniest things and make me smile from ear to ear. They give the best hugs and show me how important I really am and affirm my love is mutual. This is the _quiet_ balance that keeps my life running and my joy before my pain. For those wondering, up to bat after Christmas is Botox treatments for my migraines, a consult with an orthopedic surgeon about my carpal tunnel, my biannual tumor markers/CT scan in a few months, and maybe even abdominal reconstruction surgery. Those are my possibilities and I pray I get through what comes with grace and _quiet_. To some, that may sound scary or daunting, but when you have pain or issues, peace is getting it fixed. So with the best things present in my life, I will proceed with my plans. And with my family, friends, little loves, and Lord - I will transcend. Praise Jehovah Jireh!
United States' President Barack Obama officially signed November, 2012 as National Caregiver's Month. This is very special as all of us patients know how much caregivers truly sacrifice to _care_. And care _well_. It takes a special person to be not just a caregiver but a good caregiver, a caregiver who promotes health, wellness, comfort, and support in all he or she does. Caregivers are parents, children, doctors, nurses, friends, and even staff on the hospital's transport team or in the gift shop. They may be in unexpected places in unexpected positions, but we are completely grateful to them for sharing their smiles and hearts. In this month of Thanksgiving, honoring them seems almost obvious. For this month's international Patients for A Moment blog carnival, our topic - in honor of the month - is CAREGIVERS. Everyone is welcome to share a blog post about a caregiver, caregivers, or even being a caregiver. Please comment with a link to your post _and_ any special comments about your post OR send an email with the preceding information to agoodwin2010 (at) gmail (dot) com with the subject of PATIENTS FOR A MOMENT. Submissions are due November 24 so you have time to gather your thoughts after the US Thanksgiving holiday. The final edition will run live here on Crazy Miracle on November 30. Please write and submit! No submission is too small or insignificant. Share your voice - I know we all have something to say about this topic. Love to you all!
“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.”- William Law in A Serious Call to a Devout and Holy Life
What a response to our giveaway! The winners are KENDRA GILLILAN and RANDI so if you could please shoot me an email at agoodwin2010 (at) gmail (dot) com with your color preference and mailing address, I'll get your hair ties right out to you! Thanks to all who entered. Your comments were very touching and I enjoyed reading each one. We each have such a unique and special story to tell, and that's part of this crazy miracle. Love you all, Amanda