Liver scares

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

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

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

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

News at eleven!

Lately…

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

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

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

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

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

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

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

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

Praise & Request:: Enzymes improved!

Praise: Just a quick little note to thank you for your prayers and support – my liver enzymes are lower than they were even in January!  I got labs drawn Friday, and Molly called me late on Friday to give me the good news so I wouldn’t worry over the weekend.  My enzymes are in the normal range again, so the little increase in my Prograf must have worked.  (It always does.)

Request: The “for-sure” date for my next (2nd) endoscopy with dilation is Friday, March 16, so please be praying for that.  It’s under general anesthesia, and there’s always enormous risks with that.  Plus I really hope this does the trick to quit the choking spells once and for all.  It’s been about 2 years with them, and they are scary, embarrassing, and painful. No fun! 

Enjoy your week!  It’s definitely springtime here in Ohio! 🙂
Amanda 

March update: So much going on

Hi everyone,
Just a few things to report today…

My liver enzymes encountered a slight bump in my labs the other week.  Why do we care?  High enzymes can indicate rejection.  The team raised my Prograf (unfortunately) by 0.5mg twice/day to a total of 2mg twice/day.  As a refresher, Prograf is an immunosuppressant anti-rejection medication, and it is no fun because it causes tremors, hair loss, fatigue, and I’m starting to think kidney damage.  I’ve been reading around the internet and journals and it’s my personal opinion that over time, it damages the kidneys.  My last CT scans revealed a sub-centimeter cyst on one of my kidneys.  The kidney transplant surgeon said it was benign, but reading stories and other information is starting to freak me out.  I just try to keep my mind from going there.  I’ll get my labs redrawn tomorrow, and hopefully the additional Prograf has corrected whatever was going on.

Back therapy and treatment is still going on… I can’t say it’s going well, but I can’t say it’s going poorly either.  My back is having a hard time keeping it’s correct position – even with the SI lock belt/brace – but the last 2 weeks in a row I have tripped down the stairs.  (Really random, right?)  I currently have a virus, so I missed my appointment this week, but hopefully my osteomanipulative doctor can re-align me next week, and hopefully my back can keep its position for a week.  It’s a lot of waiting and hoping.  The chronic pain is miserable right now, but life does’t stop to let pain take its toll, so I’m just continuing on like I always do.

Regarding the esophageal dilation I had last month… it was unsuccessful.  I still choke on thick foods, and my gastroenterologist said my esophagus was dilated to 18mm which is supposedly a wide amount.  You can’t argue with choking though, so she’s going to have them repeat the procedure, this time dilating to 20mm.  That should take place in a week or two.  Hopefully it works.  I have noticed an improvement since last time, so I’m pretty sure one more time will take care of things.

I saw my pain management doctor today, and I am so frustrated.  We are completely changing my drug regimen since the Lyrica (daily fibromyalgia medication) isn’t controlling my pain, and it along with another medication are big, red flags in trying to figure out where my recent weight gain is coming from.  We discontinued a few meds today, decreased some, increased others, and I feel like we are  just shooting in the dark right now.  I’m so thankful for my pain management team, though – I feel like they’re on my side in trying to curtail the constant back/neck/everywhere pain.  Laying on the couch watching movies every night is not how I want to be spending my life right now, and they “get” that.

Your prayers would be so appreciated in this journey against increased liver enzymes, choking, and chronic pain.  Some days I feel like being a patient is my full time job when all I dream of is going back to school and wrapping things up.

I thank God every day that HE has a plan behind all of this.

Love to you all,
Amanda 

The break is over

My few-month break of laying low from any major medical drama is wrapping up.

Sure, I’ve had a couple ER visits and almost got my tonsils taken out, but I’ve managed a low amount of appointments and tests, and I’ve enjoyed great (monthly!) lab results.

But all good things come to an end.

I’m now in a major physical therapy and treatment program for the injuries I sustained in my 9/2007 car accident. I drive an hour each way to see my osteomanipulative doctor once a week, and twice a week to work with his physical therapy team. I have to wear an “SI Lock Belt” 24/7 to keep my hips aligned. I have a folder full of exercises to do to strengthen my damaged back and healing abdominal muscles. The goal is to get rid of the constant pain. Please pray I can stick with this intensive program!

Then tomorrow, under general anesthesia, I will undergo esophageal dilation. After 3 doctors and a handful of tests, we finally found out why I’ve been having awful choking spells since pre-transplant. I have a ridge in my lower esophagus, and the plan is to dilate my esophagus so wide that the ridge pops off. It is an outpatient procedure, but there will be general anesthesia and its side effects, and there is the risk the procedure may need to be performed again. Please pray the procedure is safe and successful.

Thank you all for your continual love and support.

Amanda

Stent Images + Update

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

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

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

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

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

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

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

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

Love you all,
Amanda 

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 

Soon Friday

Friday’s coming so fast – surgery, again.  Being sliced open and left in major pain, again.

Sigh.

Someone asked me if I was scared.

Of what?

Of dying on the table?  No.  Of the pain?  Scared isn’t the right word.  Of staying away from home, sometimes by myself, for a week?  Yes.  Of being woke up each morning at 5 for labs and residents?  Scared, no, but dreading, yes. Of anesthesia?  Quite the opposite.  Of getting out of bed the first time post-op? Absolutely.

About this whole surgery – it’s weird.  The transplant was sudden, phone-call-at-1:30am type of surprising, so I’m having a hard time knowing what to do with a scheduled surgery.  Most of all, I’m wishing it didn’t have to happen.  Although, I really hope it makes me feel better.  All the doctors say it will.  But once you have staples holding your entire abdomen together once, you never want to go there ever again.

Life as a transplant patient is much different that you’d think from the outside.  It’s much different than a pre-transplant patient could ever understand.  I talked to our Team’s psychiatrist about it and asked her if she finds it common that patients – even while prepared and educated pre-op – can never truly comprehend everything their Team tells them about life post-transplant… if they just can’t grasp it all, whether they are avoiding it or just overwhelmed by the amount of information to take in.  She said she’s often thought the same thing.  It’s just the way it goes.  Then you spend your entire post-transplant life hoping you’ll be one of the successes, one of the 85% of liver transplants that make it, God forbid one of the 15%. You do all you can to prevent rejection and infection, spend all your life coordinating meds, side effects, and regular tests to make sure you’re still in the clear.

As you all know, it’s a game of white blood cells lately, and my WBCs hit 0.8 last week. You guessed it, I was on Neupogen injections (again) all weekend.  My labs just keep getting worse, so the surgery needs to happen now.  For those who asked, I’ll be getting blood transfusions to make sure my levels are high enough to get through surgery.  Even my family seems more worried than I am.  While this will be no fun, I don’t think it is a bad thing at all.

Although I thought that about the transplant…

I will never, ever be the same.  I don’t think it’s my fault, but I know it’s my fate, forever my future.

And while so much is unknown, and there are so many questions to ask… to God be the glory.

Note: Contact information added to link column (top right)  No unexpected visitors, please.

1.5 weeks till surgery; WBCs

Hi, just an update for those of you who have been praying for my labs to increase so the surgery could occur.  Well, my WBC this week were 1.48 which is VERY low, but higher than my range before.  More Neupogen injections were an option but my doctor said if I felt okay without them, his advice would be to skip them.  So I did.  A few of my doctors said with labs and clotting factors like mine I’ll be getting units of blood anyways on the date of surgery.  Please remember to Donate Life (transplant) and Donate Blood!  More people than you even know have to get blood over their lifetimes – how many times is it a friend of yours?

I am still feeling very tired and sometimes weak.  I hope it’s just the uneven blood cells, so I desperately hope this surgery will help me in that regard.  That’s our one desire here. 

I have 1.5 weeks until my surgery, and I’m trying [despite my weaknesses] to live it up!  Because I’m so thankful for a year of my new life, and I know I’ll be out of commission in 1.5 weeks, I admit I’ve packed my schedule a little too full.  But it’s summer and I’m off from school, and these days have been so much fun!  I’m hoping for a fast recovery so I can continue to enjoy these things before I restart school in January.  🙂

I love all of you who have been keeping up with my journey.  My prayers are for God to touch your lives in a special way today.

Amanda

9 months & Bone Marrow

It’s been awhile since I’ve been able to post, but Northern Ireland was amazing.  Absolutely a dream. I was able to push through these barriers and complete my assignments for the course, which honestly, was a surprise to me.  We learned so much on the trip in class and saw so much of a beautiful country. I did catch some kind of infection there which was cured by antibiotics my doctor prescribed for me to take on the trip, and I had a lot of back problems, but other than that, no big health issues. I fell asleep in some classes (thanks, low WBCs) and napped a lot, but I still got through to the end!  My Ireland blog is here.

To understand where I’m coming from, let me tell you a story.  Two decades ago, when I first got “sick,” the doctors were sure I had leukemia. They did a bone marrow test to confirm their diagnosis, and it put fear into a 5 year old that would never go away.  I remember being wide awake and feeling an incredible amount of pain.  I remember hearing the drilling and noises, and I remember everyone talking and me screaming, and the nurses holding me down asking me to “Be still!”  I had no idea what was going on, but I knew it wasn’t going to happen again.  My mom later told me that she could hear me screaming during the procedure and had to go to the restroom and throw up.  My mom’s super strong so it must have been as bad as I remember it to be.  Thank God, it came back negative for leukemia, but the whole situation made my fear of everything doctors and hospitals even worse, and I was scared they’d do things like that to me again.  I got over my fear of doctors and hospitals – I had to – but I never trusted them over any kind of procedure ever again.

Fast forward to December when I had a liver biopsy.  They told me they were giving me sedation and pain medication, but I felt every bit of it, and was wide awake for the whole thing, and it was not a pleasant experience.  So I really have an issue regarding doctors and their exaggerated descriptions of procedures and pain.  “Twilight sedation” or the whole fentanyl/versed combo?  I don’t buy it.  You’re not calm, you’re not asleep, and your pain is not controlled.  The biopsy was the “icing on the cake” that made up my mind that conscious sedation and the like are terrible, cruel ways to try to help a patient.

Anyways, it’s been 9 months since my transplant. Everything is looking good except this WBC issue I’ve been talking about for awhile now.

Last week for first labs home, we learned my WBC level is 1.1, lower than before. My oncologist scheduled my bone marrow biopsy for Wednesday. Remember I told him the only way I was doing it was under general anesthesia, which is where you are 100%, completely asleep.  He wasn’t thrilled about that and tried to persuade me to get it done normally under light sedation, so I begged.  I remembered being 5 years old, being alone and tortured, and I begged some more.  My mom was there and agreed with me, telling the doctor what I was saying was true and I couldn’t get it done like last time.  No procedure room, but an OR.  No light sedation, but general anesthesia.  Thank the Lord, he gave in.

It took a month to get this out-of-the-ordinary procedure/set-up coordinated, but Wednesday is the big day.  I still hold the fear I had as a child because I don’t trust this doctor 100%, and I’m scared how painful it will be.  Was my last experience so bad because I was little and just remember it to be like that, or was it truly horrific?  Was the pain that bad?  I’ve heard some people tell me it’s pretty bad, so we will see.

You know it’s funny I’m more scared of the procedure than the results.  I just want results, period.  I don’t fear what they may be – I just need my doctors to find answers on what is causing this and how to fix it.  Whatever the diagnosis may be.

Please pray for strength, peace, and answers.

When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.
Isaiah 43.2