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

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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 

Another Update

Once again, I’m a little late on an update!

I’m all healed from my massive splenectomy!  My 40 staples are out, my incision is healed, and other than fatigue and sore (cut) abdominal muscles, I think I’m doing pretty well!  This surgery was a lot easier than my transplant, no question.  Homecare is gone, I’m done laying on the couch all day, every day 🙂 and I’m eagerly awaiting the day when I can drive again (mid-September).  

My labs have fabulously improved, and with the platelets and WBCs under control, we’re now working on the red cells.  I’m anemic, and my oncologist is trying iron supplements for a couple months before we look at any other measures.

As far as my surgeon, during the surgery, he discovered a narrowing in one of my main portal (liver) veins.  The narrowing causes decreased flow into my liver which could increase my liver enzymes (bad).  So tomorrow I’ll be at the Clinic for an ultrasound and CT scan to get a better look at that.  And a visit to infectious disease to see why my pneumonia shot isn’t “sticking.” 

That’s really it.  Hoping to start “normal life” next week (minus the driving 😦 

Happy weeks to all of you!

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 

The Stone

Hi everyone, my WBC dove again and we’re starting Neupogen injections again. How much I hope these are the last in my life!  Other than that, it’s been a slow day.  Cleaning and organizing and packing for the hospital.  

I don’t like to crowd this site with everything I read or hear, but for this day, I feel this calms so much confusion in my mind.

On quiet hearts, please join me today in reading Angie Smith’s newest blog post, “The Stone.” An excerpt:

…So many times in this life, we are convinced that its money, recognition, approval, accolades, or degrees that give us credibility and will make us feel like we’ve made it. And it’s easy to fall into the trap, because let’s face it-the world loves the shine. I get it. I mean, I GET it.

But what if we had something that was so precious that we didn’t even let the world tell us what it was worth?

We would protect it, keep it close, and pray that it would always be ours, wouldn’t we? This is how I want to think of my walk with Christ…like this stone. I can torment myself over the questions I have for Him, the doubts I feel sometimes, the genuine curiosity about my life. But instead of spending my days chasing after answers, I have decided that I have something much more beautiful.

I have the stone.

Given to me as a gift I never could have earned.

Worn proudly by His bride.

Cut at great cost, over and over again until the sun fell down and the curtain was torn in two.

For me.

For you.

Oh, precious One.

May I be a reflection of Your great worth all the days that You give me.

Angie Smith, Bring the Rain

Weekend prayer request

Friends,

I know I checked in the other day with a good update, but today, I come to you with a prayer request that will be heavy on our hearts for a few weeks, until my surgery (splenectomy) day of August 5.

As we’re on our way to Chicago for the weekend, my oncologist just called to let us know my labs yesterday showed a WBC of 0.84 – the lowest it’s ever been for me. We’re now past critical level. This is a dangerous level, and I need to be extra vigilant about germs so I don’t end up sick in the hospital like last month.

Most importantly, the count has to rise or they cannot perform the surgery. Surgeries carry huge sources of infections for many reasons, so my defenses must be higher before they will take the risk.

The problem is, I NEED this surgery. This surgery is extremely (99%) likely to fix the WBC problem in the first place. Ironically, what could prevent me from having the surgery is what the surgery is supposed to fix, to heal.

The good news is my doctor prescribed Neupogen injections for a few days. The bad news is, it’s Saturday and no one near our destination can get them in until at least Monday. We think we finally found a place, though, so fingers crossed! The other bad news is these raise my counts very temporarily and won’t last me until August 5. Sure I could do another run of them around then, or perhaps a transfusion, so we’ll see. It will be up to my doctors.

We are just humbly praying this surgery will still take place on time, God willing.

If you could join us in prayer, I know my family and I would be so grateful. Your prayers have kept me safe for over a year now, and I don’t know how to thank you.

Love and blessings,
Amanda

Update & Pieces

Happy Weekend to all of you!  I’m leaving for Chicago for a long weekend and wanted to give you an update beforehand.

I’m thankful to report that life has been pretty stable for me since the pneumonia/low WBC incident.  It hasn’t been better, but stable is more than I can ask for right now.  Very tired and weak but trying to adapt as much as possible.  Hoping in my heart of hearts that the surgery August 5 will be exactly what my body has needed all this time.  Praying stable will be a new level for me after I recover.

I always tell people how God gave me such a peace last summer while waiting for my liver.  Yes, I had questions and I definitely had “my moments,” but overall, I was calm, just waiting for the inevitable.  Praying my gift would come before another tumor moved in.  Trusting God Himself held my future and safety in His hands.

This time around – I was, at first, very scared and mostly angry that once again, it’s me who has to go through something, how less than a year after the most difficult surgery possible, wondering what I did to deserve this, it was again my time for major surgery.  More staples and scars.  More fear and helplessness.  More ICU and lines and clinging to a pillow and not being able to get into my own bed.  What was going on?  Was this really right?  But again, peace has moved in to my heart.

Do I like what’s ahead on my path?  No.  Am I excited for what’s happening in a few weeks?  No.  Would I have chosen this for my life?  No.  But it has to fit in somewhere and one day be to the glory of God.

The God of the Universe has a plan that’s greater than anything I’d ever be able to dream up for myself.

Isaiah 55.8-9

“For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord.  ”As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts as your thoughts.”

And that, I believe is where God’s Word in Proverbs 3.5-6 comes in:

Trust in the Lord with all thine heart; and lean not unto thine own understanding.  In all thy ways acknowledge Him, and He shall direct thy paths.

Until we get to Heaven, there will be suffering.  There will be questions without answers.  But He promised… 

Hebrews 13.5b

…for He hath said, “I will never leave thee, nor forsake thee.”

Thanks for staying tuned to this crazy ride I’m on.

Love to you all,
Amanda