5 Years.

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

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

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

5th transplantversary

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

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

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

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

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

And here’s to many more 5 years!!

Migraines

I’ve been fighting severe migraines for the past few months.  And I mean severe.

After three trips to the ER last week, I pulled some strings and got into the Cleveland Clinic Thursday morning to see a neurologist.  Dr. Appleby was a genius.  She took me seriously and worked with me to create a true treatment plan.

We added Neurontin/gabapentin, a medication used for all sorts of different pain, and we added Imitrex to take only when I have a migraine.  (I don’t find it works well.)

We also set up a regimen of IV infusion therapies to destroy the headache I’ve had for a few weeks, and an MRI is in the works for a few weeks.

In the ER, they gave me things like Benadryl+Reglan, Benadryl+Reglan+Toradol, and even Benadryl+Reglan+Torodol+solumedrol+magnesium (burns!!)+something else (I was asleep… thanks, IV Benadryl.)

Dr. Appleby said I need to have 5 consecutive days of 5 hour treatments which is impossible with my schedule, so we’re doing what we can.  During my first treatment, things were going well and I was resting with boyfriend by my side when they gave me the DHE – dihydroergotamine.  Within seconds, it was hard to breathe, and my chest tightened up unlike I’ve ever felt before.  The drug causes brain blood vessels to narrow, thus reducing migraine, but as a part of that, blood flow slows down everywhere else.  We were at Medina/Cleveland Clinic (not 100% Cleveland Clinic) and the nurse didn’t know how to handle it. I pretty much had to tell her to call my doctor and that this was a reaction from the DHE.  I then told her she needed to take my vital signs.  It’s not good when an IV medication is giving you chest pain and as a risk of heart attack and stroke and the nurse is just sitting and chatting at the desk.

Needless to say, we went to Hillcrest Hospital today for my second infusion.  The nurses Teresa and Jennifer were fantastic, and the infusion center was very nice.  Teresa was even able to get me a bed vs. an infusion chair because of my back.

We’ve revamped things and removed the DHE, this time replacing it with an injection of Imitrex (burnnnns!!) For those of you who suffer with migraines, here’s what I got today (all IV except Imitrex): 25mg Benedryl, 10mg Reglan, bolus of saline, dexamethasone (steroids – reduces inflammation), Keppra &/or levetiracetam (I fell asleep by the time the Reglan was infusing so I’m not positive on this one – both are seizure medications that work on migraines), 1 gm Magnesium Sulfate, and at the very end, 0.5mg of Imitrex injected subcutaneously (and let me tell you it was the most burning shot I’ve received in my life!!)

I go back Friday again, and I’m praying for relief.  Please join me in that.  If you have migraines, listen to me right now. be persistent.  Go to whoever it takes for your symptoms to be treated.  No one should have to live with migraines!!  No one should have to take migraine medications that give them rashes, hives, or cause weight gain, and no one should have to settle with “second best.”  It’s 2012 and someone can help you with modern medicine – some doctors just aren’t willing to take the risk.

Also, some of you may know that Haylie ingested approximately 1 days’ worth of my transplant pills last Sunday (9 days ago) and was on the edge of fatal doses.  I almost lost her, and watching her suffer like that – having no idea what the prognosis was going to be – was truly agonizing.  We rallied and prayed for my little fur ball, and God confirmed that he cares about even the smallest things.  My baby couldn’t keep her eyes open and had serotonin syndrome and was literally running in circles because she couldn’t walk straight.  They said the Prograf (immunosuppressant) was a major fear and it would take one week to see if she processed it okay.  Praise God, she did.

Haylie is now in the clear, and I want to thank all of you who prayed for her or would have if you had known about it.  It’s unbelievable how nothing in the world matters when your “baby” is sick.

So to all of you who live around here and like me, can you please just join my team already? We have a lot of participants but WE NEED YOUR HELP!!  Check out lots of information here: Team Race for Amanda and clear your calendar for Saturday, August 12.  If you want a unique, amazing (free) Race for Amanda tshirt, you need to register soon so I can get them designed and ordered.  This is going to be a huge day, an amazing family-friendly event, and you are not going to leave feeling disappointed.  I’ll get a video up soon to work on RECRUITMENT.  😉

xoxo
Amanda

Biopsy results – Part 1

This morning, I had my first liver biopsy in over a decade. It was pretty much as bad as I remembered it to be, but I got through it. I’m feeling tired from the versed, fentanyl, and zofran they gave me, and I have a massive headache from all the drugs, but that’s not the worst part. It feels like a needle is lodged deep into my side, and there’s stinging and pressure. Dr. Chuck, my interventive radiologist, said to expect it to be around for 2 days.

I had a terrible nurse for half of the day, but for the beginning and the end, I had a sweet nurse named Cheryl. She kept calling me her “little friend” and was so kind, gentle, and could definitely place a mean IV! 🙂 We later found out she shared our faith, and having a nurse like that is so special.  Cherly said she’d be praying for me and encouraged me by saying, despite my suffering, my story is touching so many lives. That makes it worth it.

I had a lot of pain and nausea after my twilight-sedated procedure. I actually remember the entire thing. Anyways, once they were sure I was good on the meds and the pain was better controlled, I went home and slept until about 5pm.

Then within an hour, Haylie somehow got into my room and found some chewing gum, and to make a long story short, I’m typing this from her vet’s office. Now we are relieved she’ll be okay, and we’re just waiting on her discharge.

It seems I’m going to sleep well tonight!

So as for results – the preliminary results of the biopsy showed NO REJECTION, only inflammatory changes which are nonspecific.  The bottom line is, from a rejection standpoint, there is nothing to worry about.

However, one more test is pending as they found a virus in my labs on Monday. Hopefully it will solve the elevated liver enzymes/fatigue issues, but until tomorrow, we will wait and see. If the virus is only in my blood, that’s one thing, but if it made it to my liver, there could be severe problems depending on the details.  My infectious disease doctor, who manages my immune system, started me on Valcyte, an antiviral, to start working on the virus, but everything could change tomorrow once we find out if it hit my liver or not, and if so, how badly.  And so we wait.

Another day over… hopefully a full lifetime to go.  🙂

The LORD is my light and my salvation; whom shall I fear?  The LORD is the strength of my life; of whom shall I be afraid? 

          Psalm 27.1

Love,
Amanda

Biopsy update

Hello sweet friends,

Just an update to say I just got out of the OR. The liver biopsy was very painful, and I’m now in the recovery room. I’m writing this as tears drop onto my iPad as I’m having a deep, sharp, pounding pain in my side. I’m still freaked out as I had twilight sedation, and I felt the while thing. Shots, tissue extractors, the whole bit. This has not been a good experience. Hopefully we (my transplant time and I) will get the results of my tissue samples by tomorrow so we can figure out where to go from here.

Also, my labs Monday indicated I have an inactive virus that can potentially harm my liver. Please continue your prayers. My nerves are so bad lately, I’m trying to resume school in January, and I’m honestly tired of all of this suffering.

Thank you for being here for me. Your emails, texts, comments, visits, cards, etc. give me so much hope.

Love,
Amanda

Two steps forward, One step back

Wednesday was a long day for us, but this is all part of the journey, so here we go…

(As I munch on a farmers market brownie that has an odd taste like it was sitting on pizza in the fridge or something?)

Thanks to everyone’s prayers, Haylie was fine after taking my antiviral pill.  She stayed overnight at the vet for fluids and observation, but we were able to pick her up before heading to Liver Clinic (Wednesday afternoon on CCF’s transplant floor) Look at her little bandage where her IV was (below). Poor baby!

Liver Clinic (Wed) was predictable.  You set up appointments beforehand with the transplant social worker, transplant psychiatrist, or transplant coordinators – whomever you want – plus of course the surgical team. To try and condense my story, the surgeons said my incision looked great, even though it has 2 small spots which are questionably “too open” in my opinion. They surprised me by taking out every other staple and replacing them with Steri-Strips.  The staples were really pulling and being uncomfortable, so I was grateful even to lose half! Then there are the 2 stitches, one for each JP drain that was collecting serosanguinous fluid while in the hospital. Peter, our adorable, caring, Australian fellow removed both stitches as well, and other than all that action on my abdomen leaving me sore, it all went great, and I should be able to get the remaining staples out next Liver Clinic. One week!

My pathology report on my old liver came back and we were elated to hear the news. Thanks to your prayers and our good God, the chemoembolization DID get all the cancer in the liver, and none of it spread to the lymph nodes, which would have been a big concern.  The report did, indeed, confirm I had a serious case of Primary Sclerosing Cholangitis, and it also showed my new donor liver was in tip-top shape!

I met my post-transplant coordinator who will follow and help me for the rest of my life, and she is such a smart, sweet woman.  Her name is Molly, and she works behind the scenes to make life as a patient easier. I met her co-worker, too, who covers for her sometimes, and after passing by my scheduler in the hall, the 4 of us got into a 30 minute shopping conversation about deal websites, flipflops, and tips to make my wardrobe work with my massively swollen abdomen, other than racking up a tab at A Pea In The Pod or Motherhood Maternity!! (Joanna, my scheduler, says it’ll be a month or so until I lose my “baby bump”… not funny!) anyways, everyone says you’d become like family to your team and we definitely have!

We left around 4p with everything going well. I passed Dr. Hupertz, my peds GI, while waiting for Mom to pick me up, and she raved at how well I was doing and encouraged me like she always does.

The car ride was great since I was able to sleep the whole way, but things got bad when we got to my driveway and I saw that the whole side and bottom of my cute lavender top was wet.  I stood up, and fluid literally started spurting from where the doctor removed one of the drain stitches.

Nice.

It was after 4.30pm by then, so I had to page the” liver transplant coordinator on call”, which thank goodness was Molly! We discussed the amount of fluid I’d lost (rolls of paper towels, absorbent medical pads, etc.) and decided a precautionary trip to the ER would be the best idea.

Fast forward to 2am, after some Zofran, morphine, and dilauadid … Labs.. CTscan… All looked normal for a post-surgical patient, so still dripping and oozing, they finally let me go! They found one abnormality in the CT but they were going to clear it with my surgeon, Dr. Fred, in the morning. (And yes, it ended up being normal)

Now if we could just get the fluid to stop leaking… (Although it’s better out than in!)

Oh and we saw 2 separate friends/families we knew in the OR. Please pray for their peace and healing. We already know God is good!

So fast forward to Thursday AM – Mon and Thurs are lab days where I go to my local lab and they overnight some of the rarer tests to the Clinic to save me 2-3hrs twice a week. I barely got to the lab awake, and by then Mom had talked to Molly who had talked to the surgeons… They wanted to see me, yes, back in Cleveland.

Long story short, Dr. Peter had to restitch the drains (even the non-leaking one – just to be sure) and hopefully everything will be healed enough by Wednesday to get the staples and sutures out.

Today, Friday, I’m feeling better – tired and sore, but better. My cousin and her boyfriend came over last night, Grandma and my aunt were here, and Haylie finally got her much-overdue haircut.  I have more visitors coming Saturday and Monday, so that’s exciting.  They help pass the time and it feels like forever since I’ve seen everyone.  I’m hoping in a week, I’ll be stitch/staple free, more healed, and up to a little more.

One day at a time!


(I’m off to take advantage of my Netflix and Roku box while I just might fall asleep!)

Oh and a before and after of Haylie – first confused, missing her mommy, then in the hospital herself, seen here with a bandaid from her IV from her overnight stay at the vet, scruffy hair from Mommy being in the hospital for a week… The the after picture:  after going to Aunt Nancy’s and getting a bath, a haircut, and a festive little bandana.  She feels much better now that she’s all pretty (and back to her sassy self)…

IMG_0820fsx IMG_0831fsx
Thanks so much for your prayers and cards.

xoxo
Amanda & Haylie 🙂