Portal Vein Stenosis: aka The Stent Clot of 2019

If there’s one thing I’ve learned in my 31 years, it’s that we are not given tomorrow. I know we hear that and think it doesn’t apply to us. We close our eyes at night not even slightly doubting that we will ever wake up. We know God has numbered our days, but we assume that the number most definitely won’t run out any time soon.

As many of you know, I grew up with liver disease. I was pretty stable, and a transplant – or even death for that matter – seemed like it was meant for other people. Definitely not me.

Until it was.

Until it was meant for me.

A routine scan in May, 2010 revealed a random tumor, and just like that, I needed a transplant.

One day, my life seemingly hung in the balance when everything was normal just the day before. Two days before, I was having fun on vacation in Disney World with my family.  Little did we know.

I completed a dozen tests in a matter of days, and within two weeks, I was listed for transplant.

There were procedures. There was chemo. There was waiting. Yet somehow, my anxious heart found peace.

Within three months, I received a transplant. A teenage boy died so I could live. It was a surreal feeling that has never been lost on me. I still can’t fully grasp it. My parents’ daughter, my husband’s wife, my sister’s sister, my children’s mother… I’m alive because another parents’ son and siblings’ brother is forever gone. 

I fought through an 8 hour surgery, the ICU, remembering how to walk, breathe, talk, understand. I endured indescribable pain and somehow produced strength that I didn’t even know I had. My need to love drove my need to live, and I took life one day at a time. My family and friends held me up when I was too weak to stand. They built a hedge around me with their prayers, presence, and support, and I’m forever indebted to them.

As I healed, my body turned into an unrecognizable skeleton. Pounds fell off of me like it was nothing. My incision, 50 staples in three directions, reopened and didn’t completely close for eight weeks. Home care nurses and my mom worked diligently to keep it clean and dressed.

I slowly improved. I regained a lot of my life, yet I wouldn’t feel completely normal for at least a year.

Within months of my transplant, my immunocompromised body caught Epstein Barr virus, and I struggled once again. Not too long after, we realized my spleen was absorbing all of my platelets and white blood cells. After a few months of painful procedures to rule out cancer, we scheduled a splenectomy.

My spleen was bigger than a football (huge) and once gone, my blood counts improved. Again, I healed for a week in the hospital. This time, I received all of my nutrients through a feeding tube. My transplant incision had been mostly re-opened, and I was thankful that it healed quicker this time.

While removing my spleen, my surgeon noticed my portal vein had been compromised. A month after the surgery, I had a stent put in to revive the portal vein. It was a simple procedure, and after one night in the hospital, I was home again and doing well. No pain.

Over the next two years, I had sharp pains all over my abdomen, sometimes mild, and other times, enough to drive me to go to the ER. We finally realized that I had a lot of surgical adhesions – nerves trapped in scar tissue.

The only fix for this would be another surgeon and a reconstructive surgery. My transplant surgeon sent me to a plastic surgeon who performed a reverse abdominoplasty with special care to remove any adhesions. The risk of the surgery would be more adhesions, but thankfully I’ve been free of adhesion pain ever since.

That was August, 2013.

The next several years were very uneventful. I had my tonsils removed, I had (and lost) ear tubes. I got allergy shots.  There were several hospitalizations for viruses with my weak immune system, several rounds of antibiotics for many different bacterial infections… All of this was my new normal. But nothing crazy or super shocking until April, 2019.

I woke up one morning a few weeks ago – one day after Easter and two days before Scott and I were to go to NYC on a fun getaway – sure I had appendicitis. I was in too much pain to drive. Scott was already at work, so I called my mom and asked if she could drive me to the ER. She came quickly, and it didn’t take long to see a compassionate doctor in the ER. He evaluated my symptoms and was in agreement that I definitely had a case of appendicitis. He ordered fluids and m0rphine, and I was a lot more comfortable. He suggested that we run a CT scan to evaluate exactly what was going on. Normally I try to avoid CT scans due to unnecessary radiation, but I was in agreement. Awhile after the scan, he came back to my room and said, “Well, your appendix is fine.” My mom and I looked at each other, confused. Then the word “but” left the doctor’s mouth, and my heart immediately sank. “There appears to be some sort of blood clot in your liver.” Time stopped. He said we needed to get me to the main campus of the hospital ASAP where my transplant team could handle whatever was going on.

An ambulance came and drove me to the main hospital. My mom followed behind. Another CT scan showed that my portal vein stent was compromised, so my team booked an angiogram for the next day, Tuesday.

With a MAC (anesthesia), the interventional radiologist came in through my groin and went up my blood vessels to the liver. The portal vein was indeed closing – it was almost completely clogged – and other blood vessels nearby appeared to be a little thin.

My team wanted that same interventional radiologist to repair the issues, and he didn’t have an opening until that Friday. They kept me in the hospital and monitored my liver via almost-daily ultrasounds. I kept busy doing puzzles on my iPad, reading, and coloring in the coloring book my mom got me in the gift shop.

Friday came, and surgery was scheduled. Scott came up to support me. I was prepped and ready to go, and the doctor came in. First, he said he didn’t know if he could do the procedure if I still had contrast in me from Tuesday’s procedure. He ordered an X-Ray and thankfully, the contrast was gone so he said he could proceed.

Next, it’s routine to give consent for a procedure.  You have to hear the risks and then sign a release. The doctor went over the risks of the procedure – bleeding, etc… all the normal risks. I asked if he had done this procedure before, and he said it was a very rare problem to have, so no, he had not done this exact procedure. He was hand-picked by my transplant team though, so I was okay with that. Nervous, but okay. Then he started detailing some negative outcomes from other similar procedures.

I quickly looked at Scott, and we both had fear in our eyes. Then the doctor said that I didn’t have to have the procedure – I could wait until the stent completely closed off and come in on an emergency basis. He said whoever was on call would perform the procedure.

That sounded much scarier to me. I think he could sense our uneasiness, so he said he would give us a minute to discuss. As soon as he left, Scott immediately started praying aloud. Transplant had previously let us know that this was a big problem, and I couldn’t imagine letting it go until it was a life or death emergency with 0 blood flow to my precious, transplanted liver. Scott agreed. We felt that God was leading us to proceed, so we told the doctor that we wanted to go through with it.

They wheeled my bed into the OR, and I kissed Scott and told him I loved him. I thought back to how easy Tuesday’s angiogram was, and I knew I’d be seeing him soon.

Regardless, I was so nervous. I asked the anesthesiologists give me something to calm me down. They gave me Versed while, unknown to me, Scott was calling my parents to update them on the severity of the procedure. They headed up to Cleveland while I was asleep on Propofol.

I woke up in the PACU. I was in pain. I had to pee and I was so thirsty. I wanted to see my husband. The nurse told me I had some bleeding, and that’s why they were monitoring me closely rather than sending me back to the floor. I was supposed to lay on my right side to put pressure on the bleed. I didn’t think much of it. They were still giving me m0rphine for pain, but somehow the pain felt a little worse. I begged the nurse for crushed ice to chew or water with a swab. She kept reminding me that I was NPO because of the bleeding, in case they needed to put me under again. I didn’t care- I felt like I hadn’t had a sip of water in a week. Before long, Scott appeared with my parents. I didn’t even think twice about seeing my parents even though they weren’t there before the surgery. My husband snuck me more ice, and for that I was grateful. I was so happy to have my family.

The nurse came and told me that they were waiting for a bed to open up in the ICU. I was worried – only super sick people go to the ICU. The only other time I was in the ICU was immediately after my transplant!  The nurse told me it was just because of the unexpected bleeding, and it wouldn’t be for long.

Apparently my doctor went in through my side (at my liver) and once done, his tool was supposed to insert some type of plug to close off the blood vessel and prevent bleeding, however, it wasn’t working properly and he was completely unable to close it off. Therefore it bled until it clotted. I had a lot of blood free-floating around my abdomen. My liver was very irritated, and fluid started collecting as well, I would soon found out.

The few-hour-long procedure ended up taking 6 hours.

Once they took me to the ICU, my family went and ate dinner in nearby Little Italy because the ICU wouldn’t allow them to see me again until they got me transferred and assessed. I was highly annoyed. The nurse was redressing some of my lines, and I’m not sure what else she was doing but I just felt like screaming, “LEAVE ME ALONE.” Thankfully, I tried to be nice but I was tired of being looked at, touched, tested, talked to. Thankfully I didn’t remember that the plan was for me to go home the next day because that had obviously changed.

Again, I was so frustrated to be in the ICU. There were bright lights all over. I had 2 IVs, an arterial line, telemetry leads all over my chest, a urinary catheter, oxygen, and a pulse ox probe wrapped around my finger. Was I really in that bad of shape? Once they took my vitals, the doctor updated my med orders, etc., I was worn out. The ICU was pretty firm on only having two visitors at a time. My family returned and I said goodbye to my parents and my husband. I wanted Scott to stay with me so badly, but he was so spent already, and the ICU doesn’t allow overnight visitors.  Everyone promised to come back the next day, and somehow in all of my fear, I fell asleep out of sheer exhaustion. 

The next day, the nurse was gung-ho about the order to remove my urinary catheter. I told her it was a bad idea and that it took me forever to be able to pee after anesthesia. She persisted, and I proved to her that I could not pee on my own. I kept telling her I needed the catheter back, and she did a quick bladder scan on me probably half a dozen times until it showed enough urine in my bladder that I would most definitely have to go to the bathroom. She brought in a fancy “bedside commode,” and I again proved to her that I indeed could not go. I won that battle, and she had the next shift’s nurse put the catheter back in.

I have nothing against young nurses. Heck, I used to be one. My next nurse seemed like a baby in comparison, but she was nice, and I didn’t care. Until she tried to put the catheter back in. She successfully placed it – twice – IN MY V@GINA! If you don’t understand a urinary catheter, it goes in the urethra, which is an entirely different place than a v@gina. If you don’t understand that, take an anatomy class. Catheters aren’t the most comfortable things to be placed, and even on m0rphine I asked her to find another nurse who had done this before to come handle it. I asked the first nurse if she had successfully placed a urinary catheter before, and she told me she had, possibly around 20 times. I assumed she probably meant on the fake person in her school’s simulation lab. The other nurse saved the day and they let me keep my beloved catheter until the next day, Sunday, when they finally allowed me to go back to the transplant floor.

It was funny because I had the exact same room as before the surgery. I had somehow gained a room mate, but I didn’t really care. I was just happy to be back on a regular floor and out of the ICU! No catheter, no arterial line, no large bore IV. I could walk, and I somehow was just more alert.

And, unfortunately, more cognoscent of the pain.

The hospital is a horrible place for sleep. The PCNA comes in all night (okay, every 4 hours) to get your vitals. Nurses come in to hang your fluids or antibiotics at midnight if needed. Lab comes in between 5-6 to draw blood. A resident or two comes in around 6 to see how you are and gather any new info to tell the other doctors. Food services brings breakfast in around 8, and between 9–10, the entire team of doctors – the attending, residents, physicians assistants, even your regular nurse – parade into your room to ask you questions and make a plan for the day. This is your one chance to request any changes in meds or tell them anything that might help them help you. Every single day I told them how bad the pain was and asked, “Are you sure the bleeding should be THIS painful?” And everyday, they reassured me, “Internal bleeding is one of the most painful things there is.” I told them how I felt cut wide open like when I was transplanted, and they reassured me every single day that the pain was normal for what I had going on. I still can’t understand it. I was really in agony. Thank God for m0rphine. But most narcotics make me itchy, so every 4 hours I got 4mg IV m0rphine with an IV dose of Benadryl. What a poor sight I was.

So Sunday, once back on the unit, I was really wanting to take a shower. I had been laying in a gross hospital gown for 2 entire days. My nurse explained that due to the internal bleeding, my hematocrit was really low (7), and it was too low to safely shower. If I fell or got hurt, it could be very serious. My mom suggested that she could wash my hair in the sink if only we had a chair that fit under the sink. My nurse saved the day and found the perfect chair! So I got a washcloth bath courtesy of myself and a blowout courtesy of my dear mama. I felt like a new person!

The days came and went. I was thankful to have the same nurse during the day for 3 days and the same nurse during the night for 3 nights. Transplant told me on Monday that I could go home whenever I could get onto oral pain meds. I knew it wouldn’t be that day or the next, and I told them that. I got ultrasounds most days to check the bleeding and fluid. The volume was slowly going down. My hematocrit was still struggling, so I received a unit of red blood cells. That, with a few bags of IV fluid, really perked me up. I was still in pain, but I felt more like myself.

My hematocrit increased. I took a shower on my own on Tuesday. The pain persisted. I really wanted to go home.

I decided Wednesday was a good day to try to go home but I had the attitude of, if the pain was too bad, we’d simply wait a day.

My team didn’t push for oral meds until they abruptly cancelled the IV m0rphine on Tuesday without so much as a warning. I had an order for 2 oxyc0done every 6 hours, so we switched to that. By evening, the pain caught up with me and my nurse had the doctor on call put in an order for another dose of m0rphine. I was discouraged, really wanting to be on oral meds so I could go home. By the next day, I was fine on the oral oxyc0done. Uncomfortable, but not in severe pain.  Then the physicians assistant told me the maximum she could legally send me home on would be one oxyc0done every six hours – less than half of what I was taking orally in the hospital. I’m not going to get into my opi0id reform rant right now, but that’s a huge jump. She told me I could alternate it with muscle relaxers and Tylenol once I got home, and that made me feel “safer.” I figured, worst case scenario, I could just get re-admitted if the pain was that bad. (Thank God it wasn’t, and I did well resting at home on the oxyc0done, muscle relaxers, and Tylenol, and I’m very proud that I only took the oxyc0done through the weekend and had 1 extra dose on Monday until I was completely off of it.)

That last day in the hospital though, that Wednesday, was hard. I was so exhausted from not sleeping well. I had been on m0rphine for 8 days. I had started wheezing because of all of the fluid in my abdomen. I was receiving breathing treatments for the wheezing and cough I had. (The cough is a very long story – I had it for about a month due to being sick and then allergies…. I still had it in the hospital and even completely lost my voice.  After the surgery though, it became a new, deep, productive cough… it was just a mess.) I had two panic attacks, and my physicians assistant only let me have half the Ativ@n I take at home until I asked to speak to her, broke down in tears, and she agreed to let me take the other half. My poor husband has never seen me as bad off as I was for those 9 days in the hospital. And on that Wednesday, I just sobbed in his arms. I was so overwhelmed, I felt like I was having a little bit of withdrawal from the IV m0rphine, plus I was scared of the pain, a little scared to go home.

They had an ultrasound scheduled for that day, but they were late getting the order in, so my scan didn’t happen until 3pm. I got back to my room around 4, and the scan wasn’t resulted until around 5. It showed the bleeding in a different spot, so the plan was to do a blood test to see if my hematocrit was the same as it was in the morning or if it had dropped. A drop would indicate active, new bleeding. That took an hour to come back, but thankfully, my hematocrit actually increased! So the conclusion was that it was old blood just moving around.

We didn’t get home until around 8ish. I was so excited to see my dogs. Haylie nonchalantly greeted me, and Ruby jumped up on me and squealed in delight. Scott helped me get settled, and I slept until afternoon the next day.

The first few days home, my mom came over while Scott worked. Friday I had an appointment with my PCP and she helped answer some questions and transition me out of being hospitalized. She gave me a prescription for Zofran which I had been taking for nausea, and reassured me that everything was all right.

I rested and rested for the coming days, and I spent the following week (this past week) resting and laying low. My last dose of narc0tic was Monday, and Wednesday was my first day driving again. I had an appointment both Wednesday and Thursday (yesterday) and although I’m pretty sore and weak, I’m only on Tylenol for the pain and am determined to resume my normal life next week.

We’ve been so blessed to receive several meals from people at our church. I don’t have much of an appetite and have been losing weight, but I’m not up to cooking for Scott so it’s been great. We almost have too much food!

Right now I’m still sore and get exhausted by 4pm. I’m slowly getting over the 99* mini-temps and chills I’ve had since the hospital.  I have nausea and an awful appetite and am down just over 10lbs. I think my poor stomach and digestive system are just super confused. My doctors say to give it time.

I had a follow up with my transplant surgeon on Monday. A new scan showed that more bleeding and fluid had been absorbed. There was discussion of blood thinners while I was inpatient, and for now – thankfully – I just have to take a baby aspirin. My labs looked amazing, and everyone was really happy with my progress. I have a follow up scan next Wednesday, and we plan on doing ultrasounds every 6-12 months to make sure this doesn’t happen again.

So, you wonder what caused the stent to be almost completely closed off? “Low dose” hormones I was put on in October for premature ovarian insufficiency, aka “when your body doesn’t make enough estrogen, putting you at risk of heart disease and osteoporosis.” My surgeon told me they were not low dose as the OBGYN had told me. So I’ll deal with that when I visit her in a month.

I also want to add that in the hospital, my sweet friend visited me a couple times and my sister in law came for a great visit one evening before the surgery. The thing about being in Cleveland is that it’s an hour away from most of my friends and family, so that makes visits even more special.  I’m so blessed to have great friends and family. I received so many cards, texts, messages…. I felt all of the prayers and I thank anyone who prayed for me. 

I know this post was long, but my hope is the same as always: that anyone struggling with something similar can either find answers or courage from what I went through. 

This experience had reminded me again that life is fragile, and we are not guaranteed tomorrow. I was lying in the ICU when I was supposed to be having an amazing time in NYC with my husband. What a difference a day makes! I was so afraid to die, and thank God I didn’t.  I couldn’t imagine leaving my husband or my family and friends. I was seriously so afraid I wasn’t going to make it. Maybe it was the anesthesia or the drugs, but it’s scary when you are in really bad shape and are powerless to change anything. 

I have a renewed joy of life and love of each new day. I thank God for putting that in my heart and for reminding me how special this life really is.

Much love to you all.

Liver scares

Out of the blue, my liver enzymes spiked last month. I had been on a new medication from another specialist. It’s the only thing that is new to my body, so our best guess is that my liver is fighting because the medication didn’t agree with me.

Dr. E raised my Prograf, much to my dismay.

My liver enzymes started lowering toward normal, but as of Monday, my numbers started heading up again.

I’m just waiting to hear from my transplant coordinator to tell me what the plan is.  I’m fearing another liver biopsy as they don’t put me to sleep for them, I have a panic attack on the table, and I find the actual procedure very painful.  Recovery is hard, but I wouldn’t mind it as much if I had a good procedure experience. Instead, it is a hugely stressful experience on me, and no one will listen when I try to tell them their meds don’t work… I had so many biopsies as a child and I was always under general anesthesia.  Now as an adult, they just give me Versed to make me calm but trust me, I’m not calm. Anything but. I think they probably see my name on the schedule and fight over who gets to cut on me. Like if anyone lost a bet, they’d be the surgeon who gets to do my biopsy.  If they don’t want to make me comfortable, they can get to deal with my anxiety.

News at eleven!

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.

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. 

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.

5 Years.

5 years seems so short sometimes.  Tiny babies grow to age 5 right before your eyes.  My dog is 11, and that happened out of no where! Has it really been 2 years since I’ve been out of the country?  My parent’s house is 19 years old? I can’t even believe Scott and I have been married for almost 6 months (what?!) Everything feels like it just happened.

But this week, time has stood still; it has felt like something so long, something so very substantial.

Monday was my 5 year anniversary of receiving my new liver.  I think back to what the past five years have held, and they have been full of so much.  I recently heard from someone that their mother had the disease I had (PSC) and it turned into cancer, which eventually took her life.  That’s the road I was on.  I was so close, and I barely even knew it.  I will be thankful for my donor every single moment of every single day because he quite literally saved my life.  I don’t know him, or really anything much about him, but I feel for his family who lost a son.  Perhaps a brother, a grandson, and a nephew. A friend, a classmate.  It is hard to celebrate knowing you’re doing it while another family is still grieving, and will grieve beyond the length of time.

But we do celebrate, even though sometimes bittersweet, we were able to celebrate on Monday night.  My husband surprised me with a big cookie cake that said “Happy Transplant-versary” on it, and we enjoyed dinner together and celebrated the life of a guy who was just turning a few years old the night I got “the call” for my transplant.  We were out for a birthday dinner to celebrate his sweet life, and I had no idea that it would be the last place I’d go, the last thing I’d do, until my phone would wake me up just past midnight on August 31 with the message that my organ was en route to the Cleveland Clinic and to get there as soon as possible.  I jumped into the shower, found some comfy clothes, and loaded last minute-items into my bag, knowing I’d be in the hospital for awhile.  Confident, but unsure of exactly what to expect, my parents drove me to waiting gifted surgeons, doctors, and nurses.

In a matter of hours, I went through something that changed my life completely.  A liver was a good thing, yes, but we would have a waiting period to see how well my body adjusted to it.  There was also the recovery period that the nurses told me would take about a year.  (I never did believe them until 5 months later when I tried to resume my bachelors degree in nursing.  I quickly believed them and put my life back on hold.)  My immune system would be affected forever.  I would start a new medication for life.  I would have lots of return appointments, CT scans, and lab work.  I don’t know if I’d be up for recovery again, and it did add a good amount of wear to my body, but as crazy as it sounds, it’s been worth it.

The hardest time in my life was worth seeing my sister graduate with her MBA.  It was worth being by my dad’s side after a bad accident landed him in the ICU.  It was worth me meeting Scott, my now-husband. It was worth going to Ireland with my college’s nursing school, and it was worth going to Switzerland and revisiting France with my college’s public health program.  It was worth all of the new people I’ve met.  It was worth being with Haylie as she’s grown.  It was worth being immunocompromised and getting sick more often than usual.  It was worth getting to plan my wedding with my super gifted mom.  It was worth it to be welcomed into Scott’s wonderful family.  It was worth it to get to live in my own house.  And it was worth finally being able to complete my baccalaureate degree after 9 years of fighting against my body.

Each day, I’m cautious about not catching any illnesses, and I need to get my sleep quota, and I still have psoriatic arthritis and get allergy shots and go to several doctors…  That’s fine though.  It may sound like a lot to you, but I’m used to it.  This has been my life for 23 years as I was diagnosed as a small girl. But I’m thankful that the Lord has allowed me to accept this as my life and that I’ve been able to make the best of it.  None of these days were guaranteed to me, so I can only see each new day as a gift.  Because if it wasn’t for my new liver, my days would have been limited.  They still are to an extent – I won’t live to be 1000.  But I went from a hopeless diagnosis to a lifetime of love and memories and gratitude.  That’s more than all right with me.

I like to think of my donor looking down on me and being proud of the experiences I’ve had.  He knows how thankful I am. I also like to think of my liver-sibling who received 1/3 of my liver as a tiny infant, and I hope and pray the child is a happy, healthy 5 year old today.  Our transplant was really so miraculous.  It’s a heavy gift that weighs on your soul yet lifts you up, somehow, at the same time.  Worth it.

And here’s to many more 5 years!!

Announcing…

(c) Making the Moment Photography, Cleveland, OH

I am excited to announce that Scott and I got married on April 18 in a private ceremony with close family, and we held a large reception on May 5.

Both days were what dreams are made of.

More story sharing: “A Wounded Healer – Amanda Goodwin”

I was recently interviewed and photographed for my college’s newspaper, the Kent Stater.  I want to thank the writer who was in contact so many times and took the time to  write such a lengthy article.  It was such an honor to publicly share my story, again, and I pray that this new audience has a chance to be inspired by the story God has blessed me with.

Unfortunately, there were several inaccuracies in the story.  I’m not sure if I didn’t describe something well enough to the writer or perhaps he took too much literary freedom, but this is the link to the article, and I will post it below with my corrections in [brackets]. If you’d like to share the article, please share it from this link where everything is 100% accurate.

A Wounded Healer: Amanda Goodwin
by Mark Oprea

The soon-to-be bride walks around the daylight in her house, cradling her 10-pound white shichon Haylie up against her chest. She smiles with rose-colored lips. Her almond hair curls into her chin. Her dog looks up at her with beady eyes, a pocket-sized pink bow behind [her] ear.

The mother follows her with words about the wedding shower; the father quips relentlessly through his fatherly grin. Bridesmaids begin to show up in a row, letting the unforgiving cold seep in from the driveway. A five-foot-tall Eiffel Tower [set up for the wedding shower] shines with gold in the dining room. There is still a month or two for things to go wrong.

“We’re not ready to have [the wedding] tomorrow,” she said about the ceremony, “if that’s what you’re asking.”

She is happy. She is nervous. Her name is Amanda Goodwin. She is 27, and she will be married this April.

Amanda has achieved several milestones in the past few months, her latest graduating after nearly a decade in college. Last year, her boyfriend Scott proposed to her. She’s been smiling more often, her mother, Pam, said.

Ever since Amanda was 5 years old, she has had chronic liver disease.

After nearly two decades suffering from the effects of primary sclerosing cholangitis (PSC) — a disease that scars bile receptors in the liver, causing an eventual shutdown — Amanda has been through cycles of hope and despair, often buffeted by late-night phone calls from the intensive care unit [I have never in my life called the intensive care unit.  Maybe he meant my transplant team?]. As someone erudite in medicine, Amanda likes to think of herself as a “wounded healer,” someone who’s experienced firsthand what others only study. For her, it’s been an 18-year-long test.

Moving to Munroe Falls at the age of 9, Amanda spent most of her childhood indoors. She was a “book-smart, intellectual type of girl,”said Pam, the opposite of her varsity softball-star sister, Nikki.

At the Cuyahoga Valley Christian Academy (CVCA), she latched onto the interests of a straight-A student, shot for a solid 4.0 GPA and adored the arts. Even at a young age, Amanda was aware of the research behind PSC. She and her family knew very well that a liver transplant was an inevitable episode — still the only cure known for such a disease. Most PSC patients’ livers last, on average, a decade.

“My doctor said it could happen tomorrow, it could happen when you’re 60 years old,” Amanda said. “I thought I would be a grandma and have grandchildren by the time surgery would come around.”

Yet in the unmeasured meantime, Amanda lived a life bound by the limits of PSC. Some nurses who ran across her case often mistook alcoholism as the culprit of her precarious liver. (She doesn’t even drink.) She often needed 10 hours of sleep or more each day due to ongoing fatigue.  Despite that, Amanda graduated high school in 2005 looking forward to attending Kent State. She had control for the time being.

After a brief stint in the College of Business Administration — her father Keith’s go-to suggestion, owning a successful heating and cooling business himself — Amanda turned to the School of Nursing based on a gut feeling.

As a [nanny], one of the only jobs Amanda could work at the time, she admired the notion of caring for people. The remaining nudge came from introspection.

“Because I’ve been sick since I was a kid. I knew all about the health care system, and patients, and what it’s to be on the other side, being a patient,” she said. “And I thought, ‘What better way to use my journey than to help people and be a nurse?’”

So she did.

Over the next five years, Amanda plunged through Kent State’s rigorous pre-nursing program and into nursing school. She took nutrition and studied genetics in-depth (research continues on the potential for a genetic cause of PSC). Yet eight to 12-hour clinicals brought out the worst in Amanda’s fibromyalgia and fatigue, and her [family] noticed. 

But Amanda had her plan — her usual “goal-mindedness.” She knew what her body was and wasn’t capable of. Above all, she had the will. She decided to continue clinicals despite doctors’ warnings. One even told her to drop out of nursing school.

***

It was right after a 2010 family trip to Disney World when Amanda went in for an annual test ordered by her [gastroenterologist], Dr. Vera Hupertz — a family friend by then —  a run-of-the-mill CT scan of her abdomen. [This was a] typical procedures ever since she was five: nothing imminent was expected.

[The next day, Amanda and her mom visited with Dr. Hupertz.] Hupertz’s voice sounded a little off as she spoke.

“I don’t know how to say this,” she said to Amanda. “I feel horrible saying this to you.”

The CT scan, she told her, showed a sizable tumor on Amanda’s liver. A transplant was vital and had to come sooner rather than later. She and her mother let tears flow. For Amanda, behind the wall were [not only feelings of loss and fear, but] feelings of joy and relief. A new liver would revitalize her body, effectively removing the chronic effects of cirrhosis her “malfunctioning” organ claimed.

“Still, we were honestly shocked,” Amanda said, “because it was the last thing on our minds. Also, we had the fear of whether or not I would make it through surgery or not. It was a very sobering time for all of us.”

Thus began the period of waiting on the organ recipient list. She spent days indoors, diverting a wavering mind through Netflix, [crafts, reading, and] her Bible for solace against pain. She started journaling, even turning her [journey] into a purple-and-green scrapbook. What paired with the laundry list of CT scans, chemotherapy and endoscopies was a deep plunge into the world of transplant survivors[, joining support groups, and learning from them. After [becoming a volunteer] with LifeBanc, she soon had others putting on shoes for her. A “Walk for Amanda” [during Lifebanc’s annual Gift of Life Walk and Run] was organized in mid-August.

For [three] months, Amanda’s transplant liver was still somewhere out there, waiting for her. She was at a moral crossroads. For Amanda to live, she had to wait for someone to die.

***

About 1 a.m. on August 31, 2010, the phone rang again and the family crowded around the receiver. It was her coordinator at the [Cleveland Clinic]. She told Amanda resounding news: they found [a liver] her size.

All Amanda knows about her organ donor was that he was a teenage male who passed away in an “unspecified accident,” a boy still without a name.

With more excitement than anxiety, the Goodwin family nearly “flew” to the Cleveland Clinic. They knew well the [85] percent [three-year] survival rate. They said a prayer and Amanda [was admitted into the hospital] sometime around 3:00 a.m. This was it, she thought. This was the goodbye to PSC.

“This should be a perfect match for me,” Amanda wrote in a blog entry right before her surgery. “I am so close to a new life. Being healthy is on the horizon!”

Lying on the hospital bed that morning, Amanda thought about her circumstances. She felt lucky and blessed – and not just for herself. She found out from the procurer that the new liver was not only saving her life: ¼ of it was destined for an infant.

The sun shone through the blinds in the windows as Amanda’s [parents and close friend watched the nurse wheel] her hospital bed away [towards the operating room.]

Keith remembers last seeing Amanda before her bed left the elevator, waving goodbye alongside Pam [and Amanda’s friend Jen] as she headed to the operating room. It was around [6:00] that evening when the team of doctors finally assembled.

“The thing was, we didn’t know if we were going to be seeing her again.” Keith said. “That’s what was on my mind the whole time.”

The surgery lasted eight hours. Her family was present the entire time.

By 1:30 a.m. the next day, Amanda was out of the operating room. Doctors were surprised at how well the operation went.

***

She was a new person. She was strong. She missed her dog most of all.

The pathway to recovery, Amanda knew, would be lined with tubes administering pain medication — [Fentanyl and] Morphine — others feeding a liquid diet [or breathing for her].  She looked down at her abdomen: 50 staples assembled in the shape of a chevron (a Mercedes-Benz logo, as Amanda puts it). The pain was telling and overwhelming. She gained 30 pounds in fluids alone that week.

As soon as she regained consciousness, Amanda’s logic kicked in. Her education was, at the time, lifesaving.

“Especially with my nursing background,” she said, “I knew that if I didn’t get out of bed and move my body somewhat, I wouldn’t be on my way up.”

She started walking slowly up and down the halls of the Cleveland Clinic. It seemed like a race to Amanda — an “Olympic sport” — and she ran as if she had been preparing her whole life. She mastered her medication intake and lost 10 pounds in one day. She knew every doctor and nurse by their first name, as they were like her. She imagined herself in their places.

But being immunosuppressed as a result of organ [transplantation], doctors told Amanda true body regularity would take months, even a year. She walked and walked despite the time ahead of her. She left the Cleveland Clinic on a Saturday morning. Her mother drove her back to Munroe Falls on an afternoon without a cloud in the sky.

At home, Haylie was waiting for her [at the door].

“Seeing her was proof that I was home,” she said.

What was supposed to be a new life for Amanda was merely another side of the same coin. Adjusting to her new liver meant repeated trips back to the “Liver Clinic” for CT scans (to check for any signs of a returned tumor [or issues with blood flow]), redressing surgical wounds and intake of pain [and anti-rejection] medication. Her body, as she knew, would take [some time to get past the time of the highest chance of] organ rejection. Or as Amanda puts it, “my body was attacking itself from the inside.”

Problems became so frequent that Pam learned how to dress and clean Amanda’s “cratering” wound herself — knowing, just like her proto-nurse daughter, how to attend to it tactfully. Her father had to readjust Amanda’s bed so she wouldn’t have to climb up to sleep in it. She would lie awake late at night examining with her fingers the 90 or so swollen bumps on her abdomen. More tears came. This time, those of exasperation.

“The stamina just wasn’t there for her,” Pam said. “After the transplant her immune system was shot, and the medication she was on was just making it worse.”

After a month and a half, the girl with the incision was starting to show healing signs. She was weary from the side effects of immunosuppressant drugs and steroids (she recalls restaurant menus “shaking”) but began to live somewhat of a normal life. She resumed [nannying] and her work with LifeBanc, but most important of all was the plan to return to nursing school the following spring.

The problem was that Amanda, even after transplant surgery, was able to handle clinicals even less than she was pre-operation. Doctors told her that even if she did make it through nursing school, her suppressed immune system would prevent her from working around ill patients. [For example,] caring for a sick 7-year-old with mono, could mean, for Amanda, a month in the hospital. “Fighting tooth and nail” to continue her dream of becoming a nurse wasn’t enough. She had to look elsewhere.

Her answer laid in Kent State’s College of Public Health, where she picked up online classes in the fall of 2011. Through several [additional abdominal] surgeries, [such as] a splenectomy [and reconstructive surgery], Amanda [succeeded] through courses in the college, even traveling to the World Health Conference in Geneva in 2013. She met her soon-to-be fiancé Scott the following July. He asked her out on a coffee date, and Amanda said, “we just sort of fell in love.”

In August 2014, Amanda graduated from Kent State with a focus in Education and Promotion, nearly four years after her transplant surgery. She lists it as one of her most noted accomplishments to this day, one drenched in trials and tribulations.

The “wounded healer” had finally made her mark. The surgeon’s knife had only cut so deep. The lessons of life continue to pour from her endlessly like the love she transfuses to others, her dog Haylie included — and maybe most of all.

“You can be at the end of your rope, you can be where there literally is no hope,” she said, “and you can still be able to pick yourself back up.”

It was in the fall of 2014 when Amanda’s doctor at the Cleveland Clinic sat her down after analysis. Future warnings aside, he smiled with good news.

He told her, “You can go on with life now. You can start to live.”

***

It will be a small wedding, she says. Roughly two dozen people, no more. [A large 300-people will come two weeks later.] The “wedding explosion” in the Goodwins’ basement will disappear come the Saturday of the reception.

“And then afterwards,” Amanda says, “we can all finally rest.”

She cradles and kisses Haylie behind her ear, talking about her and Scott’s house hunt, their plans to settle in the area by the fall. She wants kids. She wants to travel to France again, along with Italy. All this, she says, comes with time.

An end to Amanda’s journey isn’t finalized. She still returns for clinic checkups every so often, and even spent two weeks in the hospital in December after she became ill. (“I’m not bad,” she admits, “just unstable sometimes.”) She continues to volunteer for LifeBanc and hopes to work for them professionally one day. And to forget her donor would be to forget where she’s going and where she’s been. It’s [part of] what makes her story her “gift.”

“I’m just happy to be living life,” she writes in a recent journal entry. “Aren’t you?”

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:

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

Life with a Liver Transplant (Featured Interview)

My transplant sister Jewel features individuals with health obstacles and shares their stories on her blog, Jewel’s Kidney. She was sweet enough to share my story a couple months ago, and I’d love to share her site and the interview with you here. If you enjoy my blog, I know you’d love the stories on her site as well.

Life With… A Liver Transplant by Jewel, featuring Amanda Goodwin

Welcome back to “Life with…”.  And y’all, this is a good one.  Amanda’s story is incredibly inspiring. Going through her interview I laughed, I cried, I shouted “AMEN,” I nodded in agreement and at the end, I smiled. I love hearing these types [of] stories, reading about the battles fought and victories celebrated in this war against chronic illness.  And Amanda is a true warrior.  And if  you don’t feel amped after reading this then, I don’t know what to tell you.  So, without anymore rambling from me, meet Amanda!

Amanda Goodwin, blogger at “Crazy Miracle”

In one sentence, who are you?

A passionate dreamer who loves life, loves people, and is grateful for every part of my story.

What are you passionate about? 

I’m passionate about my hopes, my beliefs, my loved ones, making people feel special, traveling, and learning new things.  I love doing anything and everything with my fiancé and planning our spring, 2015 wedding. I also enjoy reading, getting crafty, and snuggling with my 9 pound dog, Haylie.

Tell the readers a little about your disease/ailment/illness/syndrome/healthannoyance, and what it was like when you were first diagnosed.

I was diagnosed with Primary Sclerosing Cholangitis, an autoimmune disease affecting the bile ducts and blood vessels in the liver, at the age of five in the early 1990s.  It was so scary because not only is this liver disease so rare, but I was only five years old and had no idea what was happening to me and why I was enduring so many painful procedures and treatments in the hospital.  I didn’t know why I had to miss a lot of school for doctors’ visits and hospitalizations, or why I couldn’t play rough sports with the other kids in gym class.  Thankfully, the disease stayed stable for years, and when I was 22 years old, my doctor found a tumor in my liver.  We were very afraid because this diagnosis necessitated a liver transplant, one of the most complicated surgeries of modern medicine.

Additionally, I was diagnosed with fibromyalgia in 2011 after a car accident in 2007 left me with severe, chronic pain.  Just this year, a rheumatologist told me that I’m also developing an autoimmune form of arthritis.  While it’s never exciting to receive diagnoses like these, it is sometimes comforting so that you know you’re not suffering with random pain without a cause.  Once you identify your disease, you are much more able to find helpful treatments and medications.

People with a chronic illness face a lot of challenges (A LOT)!  What’s one challenge that you’ve faced so far in your journey and how have you dealt with it?  

Physically, the chronic pain makes every day joys hard.  For example, I was on vacation last week, and standing all day in a museum or walking around the city would wreak havoc on my back, sending it into spasms for the rest of the day.  I would love to live just a few days without any pain and see how many things I could do!

Emotionally, fear has been a huge challenge for me.  When your health is always on the line, it’s easy to fear the “what ifs.”  I’ve cherished my Christian faith and my amazing support system as both have helped me stop dwelling on the future.  Also, cognitive therapy and medication has helped immensely, especially during painful or stressful times.

Who or what helps you make decisions about your health?

I have a background in nursing and a degree in public health, and when combined with 22 years of chronic illness, I have a great grasp on health in general.  I try to use natural methods when possible (such as rest, massage, or heat instead of pain medications, essential oils for simple ailments, etc.) and I avidly study treatments and conditions in scholarly publications to evaluate the research before beginning any treatment or having surgery.  I have an amazing team at the Cleveland Clinic who has taught me so much about my various health issues and consistently offers me all available treatments, and we go with what I think is best for my body along with each individual doctor’s recommendations.  I take great care to choose doctors who are well-versed in my specific illnesses, and they prove to be gold mines of information.

What was your transplant surgery like?  

The surgery itself went well, but the recovery was unlike anything I could have ever imagined or expected.  It was physically and emotionally challenging. If I knew what recovery was going to be like, I don’t know if I would have been strong enough to go through with the surgery.  I probably would have been too scared, especially now that I know the pain and complications that the surgery would entail.  My surgeons were truly gifted, but simply because of the complexity of a liver transplant, it was a long, arduous road.

What has your life been like since you had your transplant?  

Since I had liver disease 18 years before my transplant, I was always used to having a low immune system and balancing life with high levels of fatigue.  I was also used to taking medications and learning to listen to my body and rest when needed.  These things have continued to help me live the best life I can live since my transplant. Various complications occurred within the first few years after my surgery, and we had to finish all of my surgeries with reconstructive surgery due to the battlefield that had become my abdomen, but I take most health trials in stride because I’m so grateful that I’m alive with a beautiful, healthy liver.  And once you live through a transplant, I feel like everything else pales in comparison.

I have a ton of funny and memorable hospital stories.  Can you share one of yours?

Not sure if I have any funny stories, but definitely memorable ones.  Instead of seeing the transplant team, I now just see one of the surgeons because my case has gotten so complicated.  He’s one of the best in the world.  I had a full splenectomy a year after my transplant.  I was absolutely petrified of getting my surgical drains taken out because, well, unless you’ve had it done, I don’t even know how to describe it.  It feels like someone is pulling a snake out of your abdomen as it grazes all of your organs on the way out.  When it was time for my drain to come out, my experienced surgeon started having a conversation with me and engaging me in questions.  He carefully started pulling the drain while I was mid-story, and before I knew it, it was out!  I love him so much, for many more reasons than this.

What advice do you have for other people, young or old, who are waiting for a transplant?

Rally support.  Join support groups.  Ask your social worker to help you get in touch with other transplant patients so they can share their journeys with you.  Write down your questions, and get answers.  Get your family and friends on board because you are going to need all the support you can get.  Realize that recovery is hard and you are going to need help doing basic things for awhile. If anyone offers to help you, take them up on it.  Also, prepare mentally that recovery will be hard, but know you are strong enough.  Having a will to survive is critical. There are special things after a transplant that will affect your life (such as being on immune compromising medications) but you will get used to them sooner than you think.  You CAN live a great life once you get past your limitations.  You are receiving the GIFT of life itself, and that alone is worth all of the struggle or lifestyle changes you will be making.

And finally, what brings you joy?

Being alive.  Hearing other people’s stories.  Showing love to those who need it most.  I feel like I’ve been given a second chance at life for a reason, and I try to live my life in a way that would honor my donor and make my giving heart content.

Thank you so much, Jewel, for getting the word out about life with a liver transplant.  Organ transplants – as Jewel knows because she received a kidney – are amazing, life-saving gifts, and the world needs more people to choose to #donatelife!