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 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.

Recovery

Okay, I realize this is a little late, and I apologize.

I had my splenectomy Friday, was discharged from the hospital Wednesday, and today is now Friday again, and this is the first post-surgery update I’m sending.  I wasn’t that “plugged in” in the hospital.  I pretty much slept, had tests, and laid there for all those days.  I begged to come home early, and it was a success.  I’m so grateful for the early trip home!

So the surgery… it was a success.  My surgeons were shocked that the spleen inside me was larger than a football, when “normal” is the size of a fist.  We knew it was enlarged, but that big was just unbelievable.  It was so big that they just reopened my transplant scar.  They cut through all of it but a couple inches, therefore not leaving any bit of a new scar.  That was good news to me.  The bad news is how big the incision had to be – I have 40 staples for this, and I had 50 for my transplant.

As soon as the spleen left my body, my labs started increasing.  The white cells flew through the normal limit, and my platelets are actually in normal range.  I’ve never had normal labs since I was at least 5, and this spleen has been an issue since then.  My labs just started  getting worse during the past several months, thus prompting the surgery, a last resort, the last thread of hope.  My surgeon says my labs will stabilize soon.  He’s also having me start taking a tiny aspirin each morning in hopes to get my now high WBCs and few other labs stabilized.

Not sure how life will improve for me since I’m still weak/tired (from surgery, inactivity last week, and now pain pills) and am having huge incisional pain but let’s give it a couple weeks… I hope to feel so great, better than I’ve ever felt before!

Thank you so much for all the prayers, calls, cards, emails, gifts, you name it.  I am so grateful for your love.

Don’t forget the Lifebanc Walk & Run is tomorrow.  Please come if you can! It’s too late to pre-register but you can register at the door 7:30-8:30 tomorrow morning at Blossom.  Details on my site here.  I’m too weak to walk, but I will be there to thank my sweet team members.  Hope to see you there!

xoxo
Amanda 

Pneumonia

It’s 2.41a and I’m laying in bed in my local hospital. I have a spacious private room and am hooked up to telemetry monitors. I’m receiving morphine, zofran, and 2 antibiotics daily.

I am being treated for a pneumonia I only got for being immunocompromised.

I haven’t been feeling well since my bone marrow biopsy/aspiration, thus I’ve been sleeping on the sofa downstairs in my house. Monday, very early in the morning, I had an unexpected coughing spell. My parents woke up and Mom came down to check on me. The coughing was very rough and only stopped a little after Mom gave me cough medicine. In the morning, I woke up with chills, my whole body shaking, plus a fever. Dr. Lichtin has been repeatedly telling us to go to the ER if I have a fever or chills.

So, my awesome mom dragged me to the ER, who later sent me on a fun ambulance ride to the local hospital. I asked them to take me to Target, but it was a no go.

From here is a very long story, but an xray clearly showed pneumonia. They have no idea how it got here but, as we well know, being critically immunocompromised can do it.

I’ll update you later but for now, this begins my week. I hope I’m not in here long, but I am not in control now. Thank God we know Who is!

Threats

My Christmas Tree

I packed my hospital bags today… My “day bag” for Thursday’s biopsy/testing as well as my “long stay” bag just in case.

I’ve been through the ups and downs of illness for so many years that I’ve learned to have hope while always being prepared.  Both are key.

As I explained in my last post, my body is rejecting my new liver.  This could be minor, or it could be a big deal.  We won’t know until Thursday.

In an attempt to solve the problem, last week, my doctors added an anti-rejection med that they had previously taken me off of due to side effects.  Apparently, it isn’t working as my labs on Monday came back worse than before.  We are looking for clues on Thursday, despite the fact that one of my lab values might interfere with getting the biopsy done in the first place.  My INR, which measures blood clotting, is 1.5, and above 1.5, the surgeons won’t do the biopsy. Liver disease affects INR values, which is quite possibly why mine has risen.

I was doing great just over a month or so ago.  I was finally feeling energetic after my surgery, and I was impressed how well I felt – better than ever in my life!  Then slowly, I started feeling fatigued.  Next, I was taking 2 naps/day, reminiscent of my life with liver disease.  My abdomen started swelling, and I found petechiae (tiny broken blood vessels) on my skin, again, symptoms of liver disease, symptoms I had almost forgotten about since my transplant. Then I experienced itching, the hallmark of liver disease.  I knew something was wrong, but I couldn’t figure out what.

When my transplant coordinator called me and told me how high my liver enzymes were and how all signs indicated rejection, I knew.  And these symptoms still plague me even as we are trying to properly diagnose the problem and treat it most efficiently.

The disease I had been miraculously saved from just a few months ago, is now apparent again every day of my life.  I know it’s not the same disease – only symptoms of an aggravated liver – but it’s still frightening.

I finally got a new lease on life, a chance to be healthy, a chance to live a normal life.  I fought back from a treacherous surgery as a brand new life dangled in front of my eyes.  I had more energy, clearer thinking, and set up plans for my encouraging future.  Then in an instant, nothing was certain.  Nothing is certain.

Will I be well enough to resume school in less than 2 weeks after all I’ve fought through to maintain my standing?  Will the rejection really go away?  My team and transplant friends say rejection is common in the first year post-transplant, and it’s usually treatable, but this still feels wrong.  

Who gave me this gift of a new life – only to threaten taking it from me?

So what are the treatment options?  If it’s minor rejection, I will get oral steroids at home or a few doses of IV steroids in the hospital.  If my body goes out of control and the IV steroids don’t work, I will stay in the hospital so the doctors can treat me carefully until my labs become stable.  Additionally, the longer my enzymes are elevated up, the bigger risk to my liver it is.

I feel violated, afraid, and unsure.  I’m anxious and reaching a point where I’m tired of pretending everything is still fine.  I absolutely love the holidays, and this year I’ve tried to enjoy them because I have so much more to be grateful for, but this rejection issue has remained in the back of my mind throughout.  Tomorrow night is my big, annual Christmas party, and while preparation has been taxing on my weak body, I’m mentally exhausted as well.  The fear is so present.  Plus, it will be a late night with lots of people to be happy for.  I try to portray a picture of health and gratitude as always, and you all know how much I adore my loved ones, but with all this uncertainty, it’s so hard.  Even my favorite things are becoming hard.  I guess it’s not the first time.

Please pray for grace, peace, and courage.  Pray for good results and quick healing.  Hug your loved ones and be grateful you have them.  I know my mind can go a little out of control, but my worst fear is not being around anymore.  Since I love life more than some people, I feel I deserve it the most.  Is that so wrong?  If only people could realize what they have.

Thanks for sticking around.  I love you all so much.

Amanda

PS – The photo above is of my Christmas tree.  My mom lets me put it in our dining room since it won’t fit in my bedroom.  It’s pink, of course, and I keep only pink/white/silver/neutral ornaments on it.  A lot of my ornaments have very special meaning, and I take great pride in making it pretty every year!  Just wanted to share it with you, my dear friends. 🙂