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.

Good, good news!!

Just wanted to check in really quickly and say that thanks to the prayers of you and so many others, I had so many awesome reports with my doctors today!

My labs are nearly perfect.  For the first time in my life, my red blood cell levels are normal.  My WBCs are still normal, and my platelets are just slightly elevated (which is fine).  No more anemia! Lots of immunity!  It’s been absolutely unbelievable what getting my spleen out has done for me.

My surgeon is letting me stop my prednisone, and my oncologist is letting me reduce my aspirin.  Stopping the prednisone is huge because that crazy drug gives me so many side effects, including an appetite you wouldn’t believe.  Also, it poses a lot of health risks with long term use, so I’m excited about getting off of it.  A risk is rejection, but with my Prograf and careful lab monitoring, we’d definitely be able to catch and fix it before it got bad.  I’m not worried about it.  Another risk is that the prednisone has been shown in some studies to prevent PSC (primary sclerosing cholangitis, the liver disease that started it all for me) from recurring in the new liver, but the research isn’t solid at this point.  So again, I’m not worried about it.

Then my transplant coordinator, Molly, had a great idea – to lose the prednisone weight I’ve gained (although I do weigh a lot less than I did a couple years ago) to see a dietician and start a strict 1500 calorie plan with very specific food intake. And exercise.  And water.  Pray for me!  At least it involves a very sweet iPhone app – “My Fitness Pal.”  See, it’s even a pal.  That makes it seem more fun.  🙂  Exercising with my fibromyalgia has always been tricky (unless it’s in a warm-water pool) but we’ll see how things go.

So then we talked about my incision which is perfectly healed.  I have a lot of pain, but my surgeon said it’s normal for this stage in the game.  Then we discussed the numb “pouch” below my scar, and my surgeon explained that because the nerves to them muscles were cut, it will never be able to firm back up.  So hopefully when he gives me the OK we can look into reconstructive surgery.  I wouldn’t care at all except sometimes you can see it through shirts and that bothers me.  Plus, what’s another surgery?  (I’m actually serious.  I am not afraid of surgery.)

My liver enzymes are great, and my ultrasound showed that my stent is in place and the profusion (blood flow) is excellent.  Yay!

So good news all around, and my energy levels have been very good.  I’m so grateful to be at this point.  It sure took a lot to get here, but I’m so thankful for each and every new day of renewed health.

Amanda

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 

Epstein Barr & Neuopogen Injections

My transplant coordinator Molly called me mid-week.  Amazingly, the EBV level in my blood is now negative.  I haven’t been on the Valcyte that long, so my team is surprised, to say the least.  I believe it was your prayers. Thank you.

On the other hand, my WBC level hit 1.26.  (Normal range is around 4-10.) Both the Valcyte and my Cellcept could be contributors to this, so they took me off of the Cellcept.  To take me off of the Valcyte with EBV so recent is a risk, so I will finish out another month of that. 

Either way, I was/am too neutropenic to stand any infections that may be floating around, so my surgeons started me on Neuopgen, aka the injections chemo patients give themselves to increase their immune systems.  They prescribed me a series of three injections, and, once my insurance finally approved them, I picked them up yesterday.

Neupogen

I know a lot of people give themselves injections all the time – insulin, these Neupogen injections, all kinds of things.  After you do it a few times, I’m sure it’s not that hard.  And as a senior in nursing school, I most definitely know how to give an injection.  It’s just the whole idea of pinching my own skin, darting a needle into my own body, aspirating, and pushing the drug into my tissue.  Pressure and out.  To my own body?  Yes, emphasis on that.  No thank you.

After hearing my fear, Molly suggested I go to the doctors office and have the nurse there do it. I called them and made an appointment. What a great idea, I thought.

But then I thought, what kind of nurse am I?  I can give injections to patients but not myself?

So I gathered my mom and my dogs for support, sat at the kitchen table, pinched my thigh and darted the needle in.  Aspirate, in, and out.  

And it wasn’t as bad as I thought

I did it again today, and still, not as bad as I thought.

Honestly, I’d like to do this a few more times so I can see myself get really good at it, but tomorrow is my last injection.  Wanting to give myself injections means I’m a nurse, I think.  Or just an overachiever who doesn’t want to quit until I’ve perfected it.  But on the other hand, I’m glad to see them go.  The side effects of Neuoogen include bone and muscle pain, which I am definitely noticing.

You know, I never thought this would be part of transplant life.  Yet I never thought I’d get EBV in the first place.  And then again, I never thought my hair would fall out and the surgeons would be super picky about any help I try for my back pain.  I never thought they would actually rescind my clearance to drive for a couple of weeks last year.  I never in my wildest dreams would have imagined a scar this big, and I never thought it would still ache, 4.5 months later.  I never thought I’d have this many insurance problems with medications, and I never thought medical bills could actually go this high.  I never thought I’d be so scared, yet I never thought I’d ever find the kind of peace I’ve found in the last few months.

Transplant life definitely isn’t what I thought it’d be, yet for these extra days of life, I definitely can’t complain.  I’m truly so grateful, and these are all small sacrifices for the gift I’ve been given.

Here’s hoping my white cells are in normal range Monday.  Molly expects it to be really high.  We’ll see!

Have a great weekend, sweet friends.

Amanda

– Written yesterday 🙂  

Biopsy results – Part 2

Like I said in my last post, the biopsy (last Thursday) showed nonspecific inflammatory changes, but no rejection or bile duct damage.  That’s great.

However, they found the Epstein-Barr Virus in my blood after the other week’s labs, and they wanted to run my biopsy sample to see if the virus had made it to my liver.  If it had, there would be a chance of it causing a particular form of cancer, a lymphoma, called Post-transplant lymphoproliferative disease (PTLD).  PTLD is surprisingly seen mostly in pediatric transplant patients, and the only treatment for PTLD is a strong chemotherapy drug, Retuximab.  Needless to say, we have been hoping the virus was only in my blood and not in my liver.

We were relieved to find out the biopsy showed rare EVB nuclei in my liver, which my infectious disease doctor, Dr. Avery, said were not indicative of PTLD.  She said if it was going to be PTLD, there would be obvious pathology all over my liver – not just the nuclei.

So while we are thankful the virus has not yet made it to my liver, we are praying it doesn’t progress into my liver and cause PTLD.  It’s unlikely, but it is possible.

Dr. Avery wants to keep me on Valcyte, the antiviral for a couple of months to try to keep the virus from spreading.  We want to contain it in my blood. 

Also, my surgeons reduced my anti-rejection meds so that my body has more immune strength to fight the virus.  They have to be careful because if they eliminate the anti-rejection meds all together, they could throw my body into rejection.  They are going slowly and carefully, and of course, they will be watching my labs for Prograf levels.

Dr. Avery will also be closely monitoring my labs, hoping to see the virus levels and my liver enzymes remain stable or, better yet, decrease to normal levels.  

Coincidentally, the liver team is having a pathology conference tonight, and Molly, my coordinator, is bringing my case to the entire group of surgeons and pathologists.  There’s no doubt I’ll get the best treatment from a roundtable discussion of some of the best liver transplant experts in the country.  At the same time, this has the potential to be a rough road until all of the doctors agree on the best treatment. 

The EBV is definitely why I’ve been so tired and likely why my liver enzymes increased.  However, it’s been going on for a while and I believe I’m at the end of it.  

Molly is amazing.  She worked from home New Years Eve, her day off, and relentlessly called Dr. Avery and my surgeons trying to get some kind of answer to comfort us until we could hear more on Monday.  When she called one of my surgeons, he told her he was “not overly concerned.”  He’s one of the best doctors in the country and even studied with the “pioneer” of liver transplantation.  His comment relieves me.

That’s pretty much all I have for now.  Please continue your prayers that this goes away quickly and of course, safely.  This has been a rough road, but it could be worse.  I’m so grateful for your prayers thus far which I truly believe have kept me alive.

Love,

Amanda

Good News

In preparing for my 3-month-scan and labs to make sure the tumor that triggered my transplant hadn’t returned, I found two journal articles.  (Yes, I’m a nursing student who has a penchant for research.)  I read Getting a Handle on Posttransplant Recurrence of HCC and Adjuvant Treatment After Orthotopic Liver Transplantation: Is It Really Necessary?, the second of which I noticed was co-written by the surgeon who performed my transplant.  Very cool.  And regarding my labs, I wasn’t exactly sure what “tumor markers” were, so I brushed up at the National Cancer Institute.

My own personal conclusion was that I had/have a low recurrence rate due to the characteristics of my tumor.  That calmed my nerves, so we were off to a good start.

This morning I had my CAT scan followed by labs to screen for “tumor markers.”  If you’re interested in medicine, check the link above.  If not, suffice it to say they’re something in your blood that can signal whether or not there is a tumor present in your body.  

By afternoon, most of the scans had been read and the conclusions of 3 surgeons were this: (And yes, this was complete news to me.)  No where in any of my tests, labs, reports, etc. did it ever say the tumor (which was found in May) was definitely cancer.  Due to the location of the tumor, it could not be biopsied and diagnosed as cancerous or benign.  Therefore, it was assumed to be cancerous, specifically hepatocellular carcinoma to err on the side of caution.  Remember, it was never in fact proven.  In June, I received chemoembolization, chemo directly targeted at the tumor and not the rest of my body.  When my old liver was removed September 1, some lymph nodes were screened for cancer, and none was found.  To sum all of that up, my tumor may have been completely benign.  Yes, it may have been cancerous, and the chemo may have just cured it. But the catch is this, chemoembolization is rarely successful with just one treatment.  We will never know which the tumor was, so even if I am at risk of recurrence or any kind of cancer coming back, it’s a very small risk.  Because it may not have ever been there.

That was a lot to take in while it was a relief as well.  The day after I had the scan that found the tumor, my doctor said it was cancer.  It would have been nice to know that she wasn’t sure and had no way of knowing from the location of the tumor.

But I digress.

The scans today were completely clean, and because of that and the realization the tumor likely was not ever cancerous, I’m now off the protocol treatment and don’t have to get scanned for another 6 months, then every year for 5 years.  That’s a lot better than 3x/year for 5 years.  And it’s so much better to know that the tumor wasn’t positively cancer.  They can never say never since nothing was proven or tested either way, but the tumor was likely non-cancerous.

Sigh of relief.

So God is good, and while we don’t have answers to a lot of things, I really do believe that everything happens for a reason and works out for good.  Somehow I beginning to believe the people who say I’m a walking miracle.

Thank you for your prayers, Tweets, comments, emails, texts… I felt so supported and at peace today.

Love always,
Amanda

PS – My WBC and platelets are still low (we’re watching them to see what might be the cause) but my liver numbers are all perfect.  I don’t know if they’ve ever been perfect.  So grateful.

Pre-op Photos

Pre-op pictures.  (Remember, we got called in at 1:30am and they didn’t take me to surgery until after dinner time!)

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Trish RN gives it a thumbs up!

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Too early! Where is my lip gloss?

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Waiting up all night!

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Part of my liver team including Peter & Karen

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My sweet surgeon, Dr. Fred. (Frederico Aucejo)

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Lisa my social worker and I.  I love her!tumblr_l8m9ueaLM91qc81o3o1_1280

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A hug for Jen to last through surgery!

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Me and my “transport” friend

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Last time with my family before surgery!