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

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

Tonight, tomorrow & the future

Tonight, no sleep will come.

Tomorrow is my one-year transplant anniversary, or transplantversary, and so much heaviness surrounds me.  I cannot keep discerning the good memories from the bad, the blessings from the trials.  It’s all a blur in my head right now, and I cannot find rest.

Tomorrow is also a long day for me at the Clinic.  After the battle of waking up at 5, I have a very important ultrasound and CT scan.  It’s time for my second “tumor marker” labs to make sure the tumor that grew on my old liver hasn’t reappeared on my new liver – or anywhere else, for that matter.  Additionally, as I said in a previous update, my surgeon discovered a major blood vessel connecting to my liver is narrowing.  It could be a temporary thing, or it could be a more permanent danger.  The problem is that while the vessel is narrowing, or constricting, blood cannot access and/or leave the liver without extreme pressure and an increase in liver enzymes.  If the scans show the narrowing is still there, or worse, I will need surgery to open the vein.  

Needless to say, I am done with all this.  I do not want a tumor and I do not want a constricted vessel that needs to be opened.  However, this past year, I’ve really learned how our needs are vastly different than our wants.  

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

Psalm 27.1

…Reflecting on the past, praying for the future, knowing the Hand that brought me through the past 365 days will get me through the next.

Check back tomorrow for whatever I can think of to say on my official Transplantversary.  😉

5 Star Accommodations!

Here we are again, 4am and wide awake. This time my best friend Danielle is beside me, and we are both enjoying our “five star accommodations” here at the hospital.

Yesterday, my oncology and infectious disease doctors, as well as my PCP, came by to update my status. Everyone ordered more tests (xray, ultrasound, more blood cultures & labs, a swab) which have so many pros/cons that I’m trying not to think about them.

On another side, today I have 5 total visitors coming which will be lovely. 🙂 Yesterday my Grandma and sweet Aunt Tammy came to visit, and that was so nice. Then Danielle hung out with me last night and is here staying with me.  My mom has been here most of the time, too. Its great to feel such support. Talk soon! 🙂 Amanda

Just an update…
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

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

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