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.

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.

5th transplantversary

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!!

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.

Liver Mamas

“My name is Kai.  My last name is Fairy Princess!” she’ll tell you.  She’s a happy, spunky preschooler.  You’d never know that when she was 4 months old, Kai received a liver transplant because she had biliary atresia.  Her daddy donated part of his to her, saving her life.  Read About Kai on her mom’s blog to get a picture of what a little girl with a life illness is like.  Seemingly healthy on the outside but living a life just like I did at her age – adjusting normal to mean meds, hospitals, tests, procedures.  Growing up thinking that is normal.  Oh, to be that innocent again.  To be too young to realize that your normal is not normal.  Stay young, sweet Kai.  Stay young.

Jasmine, Kai’s mother, keeps a beautiful blog chronicling her daughter’s journey.  I asked if I could share one of my favorite posts of hers, and she gave me permission.  I think everyone needs to understand what mothers/fathers/parents of “sick kids” have to go through.  Now at 24, I’m really realizing that it wasn’t only me suffering for all of these years.  It must have been hell for my parents.  I wonder if some days still are hell for them.  None of us signed up for this, but together, we draw strength, and we get through whatever is coming up next.  I hope you enjoy this post by Jasmine and visit her sweet blog.  I would love to meet the Hollingsworth family one day and give Kai a big hug.

Watch this sweet video of Kai…

Now without further ado, here is “Once a Liver Mama, Always a Liver Mama” by Jasmine Hollingsworth.  I dedicate this to my Liver Mama – you know you’re not alone.  Thank you for always fighting for me and for never leaving my side.  Only a few months until you’ll be a Liver Mama of 20 years.  I love you, Mom.  I wish you could be some other kind of mama, but I’m glad I was blessed with you.  I can’t imagine going through these years with anyone else by my side for every single moment of fear, all of the pain, and even the bright beacons of hope.  We have a unique relationship because of the battles we’ve fought hand in hand for 19 years, and I treasure you all the more for it.

As I sit and keep a distant, online vigil for a baby and a family I have never met, I am forced to reflect.
 
Liver Mommas: We support each other. We share our stories, our joy, our pain, our disappointments, our triumphs, our hope, our advice… But, most of all, we share the experience of having a child with a life-threatening liver disease, more often than not, leading to transplant and the life-long trials and complications that come with that.
 
When someone announces “THE call has come; a match has been found!” We rejoice. Those of us who have been through transplant feel the excitement, the anxiety and the rush of conflicting emotions that we remember from our own experience. Those who have not, I imagine, feel the excitement and hope, fear and longing that goes with the waiting and watching your child grow more ill. 
 
When we hear “There are complications, we need prayers!” We bow our heads and fervently whisper words of love and hope to be carried to heaven, knowing the fear and the way time freezes as you wait to hear that, hopefully, everything will be okay.
 
Sometimes, with a profound sadness that cannot be expressed, we receive the devestating news that a tiny spirit was too great for this earthly world and was called to heaven. Those of us who have never experienced this have a mixture of emotion… grief for the life lost and the family, a desire to reach out to comfort where we know there can be none, a gripping fear in the knowledge that our story could have followed the same path (and maybe still could), guilt that we were “the lucky ones”, and a renewed appreciation for the life of our own children and each day we are blessed to spend with them.  
 
To those of you waiting, we know it seems endless. We remember the hope and we hope with you. To those of you recovering, it’s a long road, but you and your child will get there. One day you will look back at how far you have come and marvel at all that has been accomplished. To those of you who have come out pink and rosy on the other side, we celebrate and cherish each day with you, knowing that tomorrow could bring new challenges and fears. To those of you who have experienced the loss of your precious baby, I have no words of comfort; saying that I’m sorry for your loss does not even begin to adequately cover the depth of my empathy. 
 
I can say this, though: Once a Liver Momma, always a Liver Momma.

5 Star Accommodations!

Here we are again, 4am and wide awake. This time my best friend Danielle is beside me, and we are both enjoying our “five star accommodations” here at the hospital.

Yesterday, my oncology and infectious disease doctors, as well as my PCP, came by to update my status. Everyone ordered more tests (xray, ultrasound, more blood cultures & labs, a swab) which have so many pros/cons that I’m trying not to think about them.

On another side, today I have 5 total visitors coming which will be lovely. 🙂 Yesterday my Grandma and sweet Aunt Tammy came to visit, and that was so nice. Then Danielle hung out with me last night and is here staying with me.  My mom has been here most of the time, too. Its great to feel such support. Talk soon! 🙂 Amanda

Just an update…
Amanda