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 

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Endoscopy Results & Scripture

The endoscopy went really well.  It was 2 weeks ago today, and even with my choking episodes, my doctor found nothing.  Absolutely nothing.  There is obvious evidence of where the varices were before my transplant cured my portal hypertension (see the previous post) but no more varices, no issues, nothing. I do have a hiatal hernia that was diagnosed a few years ago, so I’m blaming that.  We have no other idea what could be causing my episodes other than anxiety.  (My doctor’s opinion, not really my own.  I’m not having panic attacks before I have my choking attacks. Random.)

In fact, look how good my esophagus looks:

I got over the anesthesia very quickly and was back to normal life within a day or two.  Now I’m just dealing with anxiety, headaches, and the pulled muscle in my abdomen.  It’s not healing well, but I will see my surgeon tomorrow and see what he wants to do about it.  Dilaudid and muscle relaxers are not the answer, even though my primary care doctor does mean well. 🙂

Please pray for strength and grace as I have five appointments at the Clinic tomorrow, including my oncologist and surgeon.  We’re also getting an ultrasound to make sure my stent is holding well.

I’m very thankful because God has sent a wonderful mentor into my life who has experienced cancer, a near-death illness, and a terrible broken relationship.  We have so much in common, it’s unbelievable, and she’s been such an encouragement to me just in the past week we’ve been talking with each other.  And small world, I went to school with her daughter for 10 years and she also taught my middle school science class.  God is so good in the way He provides.  Yesterday she shared Isaiah 62 which states:

You will be a crown of splendor in the Lord’s hand, a royal diadem in the hand of your God.  No longer will they call you Deserted, or name your land Desolate… for the Lord will take delight in you… As a young man marries a young woman, so will your Builder marry you; as a bridegroom rejoices over his bride, so will your God rejoice over you.

God never, ever wastes our suffering.

Thank you for your prayers for tomorrow,
Amanda 

More testing

Tomorrow morning at 7am, I’ll be back at the Clinic – this time for an endoscopy and possible variceal banding under general anesthesia. I’m not the least bit nervous or afraid since my pediatric gastroenterologist, Dr. Hupertz, will be performing the procedure. I literally trust her with my life, and she’s done this procedure on me probably a dozen times.

The reason I’m back with my pediatric doctor is because I’ve been having choking episodes, and the transplant team wanted me to have an endoscopy ASAP, but I don’t have an adult gastroenterologist and I’m used to general anesthesia (which adults do not get).  So they said to just have Dr. Hupertz do it since I already know her and peds patients get general anesthesia.  Seeing her again makes me so happy.  She’s amazing!

So for those of you wondering what “variceal banding” is… Liver disease causes something called portal hypertension. The blood vessels harden up and blood gets pushed around until way too much blood is shunted into the large portal vein. All of the pressure combined causes what is called portal hypertension which can cause many issues including varices. A varice is a swollen blood vessel, so swollen that it could fatally rupture. Portal hypertension causes these to occur in many places internally, especially the esophagus. Any kind of stress or prolonged pressure can cause them to rupture.

Post-transplant, my portal hypertension is gone, but many varices are left all over the inside of my abdomen, as we have seen on CT scans. There is no longer high pressure to increase the chance of rupture, but the possibility exists that I have some still in my esophagus.

Like I said, I’ve been having several unexplained choking episodes, so while my doctor does the endoscopy, if varices are present, she will ” band” them. She uses a tool to put a tiny rubber band over each varice, and the bands, over the course of a couple days, shut off each varice’s blood supply so they die and fall off.

We’re not sure if varices are present in my esophagus anymore, but either way, we need to see what is causing the choking. These episodes used to occur in the last months preceding my transplant, but I’ve been fine ever since. Until after my splenectomy.

So please pray all goes well and we find an answer to the choking spells.

In other news, my excruciating left arm pain occurring since my splenectomy is still here, so I had an emergency vascular ultrasound on Friday to see if a blood clot was causing the pain. Praise God, there is no blood clot! But unfortunately, this likely means it’s nerve pain, and now I will be continuing treatment with neurology.

And then there was last Wednesday when I lifted an almost-three-year-old up and over into his crib and completely tore out a muscle in my abdomen – yes, a muscle that was still healing from my surgery.  My doctor told me no more lifting and put me on muscle relaxers, so I’ve been trying to take it easy.  It’s so painful – I definitely learned my lesson!!

Lastly, please look into signing up on the bone marrow donor registry. I put a lot of thought into it and then tried to register today, but unfortunately they won’t accept organ transplant patients. And I cannot donate blood either because I’m too anemic. So please do that, too, for me.  Oh, and while you’re at it, sign up to be an organ donor.  🙂  One day I hope to be able to give back, even though I know I could never repay what has been given to me.  I will at least try for as long as I live.

Have a wonderful week.  Count your blessings, and do something today to make someone smile.

Love,
Amanda

Urgent: All Over Again

It was Wednesday.  We had just left the Cleveland Clinic, and I told Mom how excited I was that I wouldn’t have to come back for three whole weeks!!  It had been months since I got a break this long, and with the splenectomy behind me and the fact that it was my one-year transplant anniversary, it felt so good.  I knew the CT scan and ultrasound could come back with abnormal results, and I knew there was an ongoing issue with a vein to my liver narrowing, but I wasn’t worried.  It was a good day.

Then Thursday, I got a phone call.  Funny how one phone call always has the power to change so much.

It was my transplant coordinator.  The ultrasound showed there might be more narrowing, but the radiologists and surgeons discussed my case and decided they’d need a different kind of CT to be sure about the plan of treatment.  I had to come in Friday for an abdominal CT because the matter was urgent.

Phone calls like that have been getting familiar, so the future scenario had definitely crossed my mind.

I went in Friday for the CT with IV contrast – no big deal.  I’d already had a few earlier this month, and dozens more in my lifetime.  But at the end of the day, I got a phone call, again from Molly my transplant coordinator, saying the narrowing has worsened and the portal vein and left renal vein to my liver are too constricted.  There isn’t enough blood getting into my liver, and my surgeon, the head of transplant at the Clinic, and a couple of interventive radiologists have discussed my case.  They all came to the agreement that I need to come in as inpatient Tuesday morning (Monday is Labor Day) to begin a process to open the veins.  Tuesday, they will put me on heparin therapy to thin my newly platelet-loaded blood, and Wednesday morning they will put me under general anesthesia (thank goodness) while they go in through my liver and feed a catheter through to the veins in question.  They will then inflate balloons in the veins and pull out.  If the veins stay open on their own, that’s great.  If not, they will put stents in to keep them wide open.  Knowing how I handle anesthesia, I’ll be in and out for the rest of the day, and then Thursday, I will have an ultrasound to see if the veins are doing well.  If they are, I can go home.  Let’s pray they will be.

So that’s my week.  And there goes next week.  I was supposed to start driving, go back to my nanny family, and basically get on with my life without my spleen, finally feeling good.  But sometimes life has other plans in store for us, so I have no choice but to again, bow low and do what’s best for my body, reluctantly conforming the rest of my world to oblige.

Your prayers are so greatly appreciated.  This is a risky procedure, plus there are so many risks to undergoing anesthesia.  And lately I’ve been completely emotionally drained, and honestly, really struggling. Having a hard time staying afloat right now.

Thanks for always being here.  I love you all so much.

Amanda

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

A road trip, visitors & a splenectomy

It’s 10pm Wednesday night.

I’m sitting in a wheelchair in the backseat of an ambulance being driven by an attractive EMT.  We’re driving on the highway, under the stars, talking about life, love, roadblocks, choices and pain.

He controls my temperature and the car stereo system while he speaks words far more valuable than the gas in his tank or equipment in his trunk.

I’m excited yet petrified to be going to the Clinic.

Excited because it’s my favorite hospital, excited because my doctors are here, and excited because there’s a chance I will be on the transplant unit, able to see some special familiar faces.

Petrified because this is my last chance for answers on my low WBC and platelets. Scared because the next couple days are critical to the rest of my life.

I’m finding out – once and for all – if I need a splenectomy or not, if I want to deal with the side effects or even what those side effects may even be.

Forget the pneumonia hanging out in my chest… My problems now are much more important than that. Or maybe not – what if the worst – or praise the Lord, best! – is yet to be seen?

Either way,

Psalm 23.2-3
He maketh me to lie down in green pastures: he leadeth me beside the still waters.  He restoreth my soul: he leadeth me in the paths of righteousness for his name’s sake.

Amen.

And thank you for all of the sweet friends who came to see me pretty much all day today.  You are all so precious to me.  Thanks for all the words of prayer and thoughts of kindness coming at me from so many places.

Love love love
Amanda

8 Months – News & Prayer Requests

Hi everyone,

Yesterday marks my 8-month transplant anniversary. In important news, this year’s Lifebanc Gift of Life Walk & Run is going to be Sunday, August 13 at 7:30am I don’t have my leaders’ guide yet, but I will be leading a team. I hope to have double the participants as last year so write it on your calendar, invite a friend, and stay tuned for an information statement here – probably in a month or so. Here is last year’s campaign page – Gift of Life Walk & Run! as well as photos/video about last year’s event – if you’d like an idea of what this is all about. This year I will have 365 more things to be grateful about, and a donor to honor, so it’s my dream and goal to get double participation.

So news about me. If you’re here, you probably are interested. 🙂 I have a few people checking in via email and social networks, and this is your update. To be candidly honest, I am not feeling that well right now and am extremely overextended with school and obligations, so please let this be your update. My inbox is so behind right now, you don’t even want to know! I love you all, I just am not physically up to all I want to do at the moment.

There is so much going on right now, I don’t even know where to start!

Since March and throughout April, I have had 4 trips to the ER, have seen 2 new specialists, 2 MRIs, 1 CT scan, and numerous other tests.

I desperately want to tell you how well I’ve been feeling and how amazing this new life is, but I can’t do that this time.

See, a lot of you – myself included – may have thought post-transplant life would have to be amazing – easy, even.  Low key.  Healthy.  Fewer meds.  More energy.  Healthy.

One day, I’ll get there.  But not today.

Sure, I have to think of where I was before my surgery.  I had so many other diagnoses along with liver disease, and a tumor to go with it, so thinking one surgery would cure my life was foolish.  Yes, I have a healthy liver now.  That’s amazing.  But I still have back pain, fatigue, and fibromyalgia, with the addition of medication side effects, a low immune system, chronic neutropenia (low white blood cell count, in my case – 1.5 – critical), and newly, degenerative disc disorder and arthritis in my back.  I have to go to the hospital with practically every new problem that arises, even if I’m just sick with a virus or dehydrated.  I get a new specialist over ever issue, because my transplant team acts like my body is a gold box housing a diamond, a donated liver, a rare treasure to guard like it’s the most important thing in the world.  I agree, this gift is priceless, but I think sometimes they go to the extreme.

Either way, this is my life now, and 8 months later, you’d think I’d be able to cope with it.  Sometimes I wish I had my surgery when I was a lot younger so I wouldn’t know what kind of life to compare it to.  Maybe this would be normal to me.  Or maybe my idea of normal life is skewed from being a victim of childhood chronic illness.  What if this is the best it ever was, or ever will get?

I’m trying to be okay with that.

The other week, I had many doctors appointments to figure out some more issues going on with my crazy body, and since then, we are still trying to get on the path to answers.

First, throw in a virus that had me to my PCP twice, ER twice, and required 2 types of antibiotics.  Not fun.

Then, the “big thing” right now – we are consulting with a hematologist/oncologist about my chronic neutropenia and thrombocytopenia (low white blood cell levels – “critical,” even, and low platelet levels).  Last week, I had several labs done for oncology and a CT scan for them.  The doctors have also ordered a bone marrow biopsy, as well, which is my absolute last choice for anything.  More on that another time.

Last week, a home care nurse stopped by to teach me how to administer pentamidine treatments to myself at home.  Because my white cell count is so low, I’m at risk for PCP pneumonia, one of the most dangerous kinds of pneumonia, so I have to get these monthly treatments now.  They taste really bad, hurt my throat, and make my voice hoarse, but at this present time, I don’t have a choice. It’s also scary why I have to get them.

All of that said, my good news is that I’m going to Disney World tomorrow – hopefully – followed by 2 weeks in Ireland with my nursing school.  I’m hoping I’ll be up for both trips.  If I can just have improved health during this month – nothing more – that’s really all I want.  I’ve been especially dreaming of Ireland for a couple years now, so please pray for my one wish to come true.  I filled out my application, turned in reference letters, interviewed, got accepted, paid, bought rainboots, started packing… I’m so close to being there!  🙂 It’s such bad news that my WBCs are still so low. I’m waiting to hear from my infections disease/travel medicine specialist to confirm whether or not I can still go on these trips – I don’t think anyone was expecting my labs to get, and stay, this low. Not only do I sleep all day and am so weak, but I don’t have much of an immune system at all right now.

Despite it all, I’m forcing myself to still get out there and enjoy life so it doesn’t pass me by. I’m making desperate attempts to keep up with all the people I love, the friends I hold so close to my heart. And it always is such a wonderful thing to see how we, at our lowest, can care the most for others who are hurting. It’s an amazing part of this human suffering, and the times during which I am low, it’s so evident – and such a blessing – to me.

But the enjoyment of everything, the gratitude, are the only things keeping me sane right now. I was thrilled to be able to attend my precious cousin’s wedding a month ago as well as my little buddy’s karate testing – yellow belt!  I go out with my friends a lot and have still been able to go to church and Bible study – priorities! School hasn’t been going very well, but I can’t say I didn’t try. Fun in the works is my baby sister’s graduation party and my birthday in a few months.  I think because I’m a summer baby I have an extra passion for summer, and I’m making mental lists of all the things I want to do this year!  Last summer doesn’t count for too much but waiting on my liver.  Even though a year ago this month was the time my world was forever changed, I’m trying to focus on the good things that are all around, even if it’s just snuggling with my little Haylie, the anticipation of Ireland, or the feeling of seeing that perfect pair of shoes on the shelf. I love moments like those.  🙂  So everyone please spend the next week savoring the big and little moments, being passionately grateful, in and for your life.

So friends, this is your big update on all things in my health life. Thank you, thank you, thank you for all of your support.  Please pray I may have peace with everything no matter what happens as well as the purest form of gratitude for my new life highs and lows.

Love, love, love
Amanda

One night when I was really upset about all the confusion and pain going on around me, my mom wrote this Scripture down for me:

Be merciful unto me, O God, be merciful unto me: for my soul trusteth (taketh refuge) in thee: yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast.

Psalm 57.1