One Year

With each day that passes, I’m more acutely aware that Scott and I have been actively trying to conceive our child for officially a year now. Perhaps the thought of “a year” makes it seem longer than it has been in reality. Twelve months. One year.

I cannot believe what this year has held. Countless prescription hormones. Oral, injections, patches, suppositories. The myriad of side effects: hot flashes, insomnia, migraines, dehydration, bloating, chills, pain, mood swings, crying spells, bruises, nightmares, 30 pounds of weight gain, and probably more that I’ve forgotten with time. Literally dozens of early morning drives to our Beachwood clinic and a couple even further out to Avon to make sure my specific doctor was the one doing any needed tests. Labs and more labs, scar tissue building under each antecubital vein. Oh and transvaginal ultrasounds – literally dozens. They used to make me feel violated but now knowing that every tech in the office has seen my female anatomy, external and internal? It just makes me feel even more numb.

The Beachwood office is grey and drab but the secretaries and nurses add bits of color. This place is where I watched all of my follicles grow, it’s where my embryos rest, frozen in time, and it’s where I was promised hope. It’s where both of my intrauterine inseminations were cancelled, where we found out I wouldn’t be having a 5-day transfer, where over a dozen follicles were extracted from my ovaries while propofol kept me sleeping and as the nurse anesthetist put it, fentanyl kept me from writhing in pain. It’s where my husband’s sperm was injected into my eggs and the cells in our embryos later multiplied into blastocysts. It’s where I woke up after IVF, tears streaming from the months of pain before combined with the screaming, acute pain of the needles that had just pierced my vagina and ovaries fifteen times. I prayed to God that morning and silently hoped that all of this was worth it, that every tear, every procedure, every hope and disappointment, every check written would soon be worth it.

A year probably seems so insurmountable because of the questions that never leave my mind. Was a year a fair deadline, or was it merely a super-imposed notion? If we are not pregnant at a year, would that mean our chances were higher or lower that we would soon – or ever – meet our child? What does “a year” really mean; what does it really define?

I hope to find out soon, but for now I know that my husband and I are the 1 in 8. We have infertility, and I think we have it bad. We have given our hearts, souls, and finances in hopes of bringing a child into this world. Our families and communities have rooted for us, supported us, and prayed for us on this journey. (Thank you.) But what is a journey anyways? Does it always end at a destination? Maybe not always the one that hopes and dreams and aching hearts are made of. And that is a fear too big for me to say out loud.

I once had a dream (while on ovarian stimulating shots, where the dreams are extra vibrant, cruel, and detailed) where I had finally given birth to the perfect child, a sweet and beautiful daughter. It horrifies me that my mind remembers the graphic details during which a man with no face stormed into our peaceful hospital room past my husband and I and grabbed the swaddled bundle of joy right from my arms. The man was screaming that it had been a mistake, aggressively shouting that I did not have a baby after all. I sat there with my mouth wide open, traumatized to a point of no return. Each time I hit that point in recalling that story, my mind fades to black.

So, one year. It’s been a cruel one punctuated with hope. Yet I plead with you, Time, “Please don’t let there be a second year of this.” I’m not sure my heart could bear it. So for now, let each new day on this journey only hasten the arrival of the hope of our promise. May this territory never become our familiar.

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

Not them

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.

Rita

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.

Lately…

Posting this from October 1:
It’s been awhile!

September was a busy month but I did have my annual checkup with my transplant/spleen surgeon. I had my CAT scan and tumor marker labs and I am tumor-free! Not a trace in sight! My liver is doing so well that we reduced my anti-rejection medications by 0.5mg. I got a clean bill of health, considering the grand scheme of things.

I had some migraine infusions throughout the summer and then found a neurologist who works mostly on headaches and migraines. She changed some meds and scheduled a procedure, so let’s see how that goes later on. I’m very hopeful about her. She is a Cleveland Clinic doctor, as all of mine are.

Now it’s October – my, how time flies! I’m currently at my second ketamine infusion. Ketamine is an anesthetic agent but studies have shown that it can have nerve pain-relieving qualities. At an appointment in September, my pain management doctor and I agreed we had exhausted all options. We have tried everyone and everything and I still live in pain. So she explained ketamine to me and told me we could to try it. I eagerly signed on.

Last week, I had a ketamine infusion and another today. I lay down and get an IV of ketamine with Versed (midazolam) to counteract its side effect of anxiety. It IS anesthesia so I do get dizzy and tired, so I mostly sleep and sometimes work on my phone/iPad when I’m not too dizzy to read. I find it helps if I close one eye. Things don’t blur and spin as much. 😉 But the great news is that these treatments seem to be effective so far. My doctor is highly regarded and esteemed, and I’d trust this one with anything. She says ketamine can be uneffective, or work for weeks to months. Hey, I’ll take whatever I can get! I’m very hopeful about this one. Pray for me, friends!

I came home and meant to post that for you all but of course, I was too tired and the iPad didn’t seem to want to sync with the iPhone or laptop.

Since then, more ketamine good news.  I go back in 2 weeks for another, and I’m excited.  It’s really taken the edge off of my pain which is SO. NICE. I am exited to see how the third one helps as they supposedly build on each other.  The only downside is I need 2 days off each procedure.  One for infusion day and the next for sleep-off-the-anesthesia day. 🙂

I’ve been busy lately, especially trying school for the first time in over a year.  I’ve added a Bachelors of Science in Public Health with a focus on Health Promotion & Education to my Nursing major, so I have extra work to do now!  The good part is that all of the Public Health courses are online, so I can work on it while I’m trying to get the stamina to return to Nursing and clinicals.  Please pray that I can get there by spring.  Then I’ll graduate with two degrees and move on to whatever God has out there.  Something I still have yet to learn. 🙂

Here I am Lord, send me

After this long night, it will be the time for my now annual checkup to make sure my body is doing a good enough job housing my donor liver and that nothing has turned hostile.

Today is the day I get to remember what’s actually possible and how grateful I am that it hasn’t occurred. …yet…

Every 6 months, I need to get a CT scan and labs done to ensure my body is still cancer-free. We look at organs, tumor markers, you name it – just looking for anything we can find to be wrong.

No matter how much faith I have, how many people I have rooting for me, no matter how much strength I can muster to get through each day, every 6 months I am left in a place I’d rather not revisit.  After all, it wasn’t but a little over 2 years ago when on this visit, I found out a tumor plagued my liver and I’d be instantly put on the transplant list.  What a difference an afternoon makes.  Oh, how ignorance is truly bliss.

The what’s and when’s replay in my mind even when I shoot them down. The statistics of recurring tumors and cancer and even kidney failure as a result of my medications… So many complications wouldn’t be a surprise. I’ve given up on sleep tonight.  I usually handle this better – much better – but lately, I’m just sick of being the patient.

Yet I know even if the worst did happen, I’d get through it just like I got through the past 20 years of sick and surgery and struggle. I’d get through it with my God and the wonderful people He has put into my life.

Aren’t we promised we have nothing to fear? Then why am I curled up in fear pleading with God to knock me out or let the Ativan kick in

This is uncensored real life, everyone. Sometimes there’s just no point hiding behind the wall.  This is me, and when you, God forbid, get to a similar point in your life, you’ll understand.

Please pray for me today for…
1) the stamina to get through a grocery list of tests and appointments
2) kindness when it’s the hardest
3) God’s will be done
4) I maintain an open, accepting spirit. “Here I am, Lord, send me.”

 Kelly Clarkson: Up to the Mountian

Oh, this is what it feels like…

I love you all and pray this away from each and every one of you. ❤  Please pray I get through this, one day at a time.

A beautiful but painful thing

And I am painfully, but rightfully, reminded that this is not all we have. We have a hope that is nestled in the grace of God and promise of an eternity with Him, apart from pain, [disease], sin and disappointment. This is temporary. Oh, so temporary. Even when the scars are lifelong. So amidst our current frustration, we are forced to see this life a little more through the eyes of our Creator. A beautiful but painful thing.

Holly McRae

Stent Images + Update

Here are the scans my doctor took during the surgery.  The first is my liver and the portal vein connecting with the left renal vein before they inserted the stent, and the second is my liver/veins after they inserted the stent.

Look at the “mass” on the left side of the scan.  That’s my liver.  Those tiny metal-looking objects are apparently clips used to shut off veins during my liver transplant. (The liver is a hugely vascular organ with so many blood vessels coming in and out of it.  During a transplant, surgeons must cut and re-attach the blood vessels in both organs, and some are just “clipped” off.) The line in the middle is the vein. The big “glob” on the right of the first photo is the back flow of blood waiting to get to my liver, but it couldn’t because of the constriction.  Then notice it’s gone in the second photo, and everything is very evenly flowing, as opposed to picture one. SO cool, right? 🙂

And just an update – my labs this week were great.  My hematologist/oncologist told me he was “very excited” about them.  The splenectomy has my WBC and platelets where they should be, and his suggestion of taking daily iron pills has pulled my hemoglobin/hematocrit up.  My labs are finally not looking half-bad!  Hemoglobin/hematocrit values measure, essentially, your red blood cells, and after being on iron for only a month, my hemoglobin went from 8.4 to 10.8 (normal is 11.5-15.5) and my hematocrit went from 26.5 to 38.4 (normal is 36-46%).  So I’m still anemic, but much less anemic.  This should eventually help my energy levels which still aren’t up to where I think they should be.  My doctor hopes another month or so on iron pills will produce even higher H&H values.  We’ll see!  

Then in other news, the mono I caught last December is active in my body once again, but it comes and goes a lot so I don’t think it’s a big deal.  It could explain my lack of energy but there’s about 100 things right now we think may contribute to my fatigue.  My labs, lastly, show I may have a slight drug allergy right now,  but if you only knew how long my medication list was, you’d know that it’s not worth messing with.  It’d be nearly impossible to narrow down which drug it is, and it’s minor enough we can ignore it for now.

As for pain, I’m having excruciating “referred pain” in my left arm/shoulder that we think is related to my diaphragm being distressed during my splenectomy.  It’s such bad pain and not much takes it away, so I pray it passes soon and it’s not a permanent thing.

Then a good news/bad news thing happened… I got to see my pediatric gastroenterologist on Monday, and I’ve missed her so much since I have to see “adult” doctors now.  It was so great to see her, but the problem is that I’m choking a lot.  I used to do it before my transplant and choke so hard I’d vomit and not be able to eat for a couple days, but then it stopped post-transplant.  Since the splenectomy, it’s back, so my transplant team told me to go back to Dr. Hupertz since she’s familiar with my case.  I trust her with my life, no questions asked, so I know I’m in good hands.  In two weeks she will run an endoscopy on me to see what’s going on, and if I still have varices in my esophagus, she will band them as well.  (More on that later, if there are varices.)

I also saw my transplant psychiatrist this week, and I’ve been dealing with a lot of anxiety and panic attacks lately.  I have nightmares and many other symptoms, and she told me again that I have post-traumatic stress disorder, or PTSD.  My nerves are apparently worn out from this yet short lifetime of mine. I have learned, though, that moving on sure does take awhile, and sometimes I’m not sure if it’s ever entirely possible, or even what’s best for you.  But I’m trying so hard to get to “that place,” wherever that may be… One day at a time.

So that’s it for now… I just wanted to share my super cool pictures and give you an update.

Love you all,
Amanda