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

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 

Epstein Barr & Neuopogen Injections

My transplant coordinator Molly called me mid-week.  Amazingly, the EBV level in my blood is now negative.  I haven’t been on the Valcyte that long, so my team is surprised, to say the least.  I believe it was your prayers. Thank you.

On the other hand, my WBC level hit 1.26.  (Normal range is around 4-10.) Both the Valcyte and my Cellcept could be contributors to this, so they took me off of the Cellcept.  To take me off of the Valcyte with EBV so recent is a risk, so I will finish out another month of that. 

Either way, I was/am too neutropenic to stand any infections that may be floating around, so my surgeons started me on Neuopgen, aka the injections chemo patients give themselves to increase their immune systems.  They prescribed me a series of three injections, and, once my insurance finally approved them, I picked them up yesterday.

Neupogen

I know a lot of people give themselves injections all the time – insulin, these Neupogen injections, all kinds of things.  After you do it a few times, I’m sure it’s not that hard.  And as a senior in nursing school, I most definitely know how to give an injection.  It’s just the whole idea of pinching my own skin, darting a needle into my own body, aspirating, and pushing the drug into my tissue.  Pressure and out.  To my own body?  Yes, emphasis on that.  No thank you.

After hearing my fear, Molly suggested I go to the doctors office and have the nurse there do it. I called them and made an appointment. What a great idea, I thought.

But then I thought, what kind of nurse am I?  I can give injections to patients but not myself?

So I gathered my mom and my dogs for support, sat at the kitchen table, pinched my thigh and darted the needle in.  Aspirate, in, and out.  

And it wasn’t as bad as I thought

I did it again today, and still, not as bad as I thought.

Honestly, I’d like to do this a few more times so I can see myself get really good at it, but tomorrow is my last injection.  Wanting to give myself injections means I’m a nurse, I think.  Or just an overachiever who doesn’t want to quit until I’ve perfected it.  But on the other hand, I’m glad to see them go.  The side effects of Neuoogen include bone and muscle pain, which I am definitely noticing.

You know, I never thought this would be part of transplant life.  Yet I never thought I’d get EBV in the first place.  And then again, I never thought my hair would fall out and the surgeons would be super picky about any help I try for my back pain.  I never thought they would actually rescind my clearance to drive for a couple of weeks last year.  I never in my wildest dreams would have imagined a scar this big, and I never thought it would still ache, 4.5 months later.  I never thought I’d have this many insurance problems with medications, and I never thought medical bills could actually go this high.  I never thought I’d be so scared, yet I never thought I’d ever find the kind of peace I’ve found in the last few months.

Transplant life definitely isn’t what I thought it’d be, yet for these extra days of life, I definitely can’t complain.  I’m truly so grateful, and these are all small sacrifices for the gift I’ve been given.

Here’s hoping my white cells are in normal range Monday.  Molly expects it to be really high.  We’ll see!

Have a great weekend, sweet friends.

Amanda

– Written yesterday 🙂  

Biopsy results – Part 2

Like I said in my last post, the biopsy (last Thursday) showed nonspecific inflammatory changes, but no rejection or bile duct damage.  That’s great.

However, they found the Epstein-Barr Virus in my blood after the other week’s labs, and they wanted to run my biopsy sample to see if the virus had made it to my liver.  If it had, there would be a chance of it causing a particular form of cancer, a lymphoma, called Post-transplant lymphoproliferative disease (PTLD).  PTLD is surprisingly seen mostly in pediatric transplant patients, and the only treatment for PTLD is a strong chemotherapy drug, Retuximab.  Needless to say, we have been hoping the virus was only in my blood and not in my liver.

We were relieved to find out the biopsy showed rare EVB nuclei in my liver, which my infectious disease doctor, Dr. Avery, said were not indicative of PTLD.  She said if it was going to be PTLD, there would be obvious pathology all over my liver – not just the nuclei.

So while we are thankful the virus has not yet made it to my liver, we are praying it doesn’t progress into my liver and cause PTLD.  It’s unlikely, but it is possible.

Dr. Avery wants to keep me on Valcyte, the antiviral for a couple of months to try to keep the virus from spreading.  We want to contain it in my blood. 

Also, my surgeons reduced my anti-rejection meds so that my body has more immune strength to fight the virus.  They have to be careful because if they eliminate the anti-rejection meds all together, they could throw my body into rejection.  They are going slowly and carefully, and of course, they will be watching my labs for Prograf levels.

Dr. Avery will also be closely monitoring my labs, hoping to see the virus levels and my liver enzymes remain stable or, better yet, decrease to normal levels.  

Coincidentally, the liver team is having a pathology conference tonight, and Molly, my coordinator, is bringing my case to the entire group of surgeons and pathologists.  There’s no doubt I’ll get the best treatment from a roundtable discussion of some of the best liver transplant experts in the country.  At the same time, this has the potential to be a rough road until all of the doctors agree on the best treatment. 

The EBV is definitely why I’ve been so tired and likely why my liver enzymes increased.  However, it’s been going on for a while and I believe I’m at the end of it.  

Molly is amazing.  She worked from home New Years Eve, her day off, and relentlessly called Dr. Avery and my surgeons trying to get some kind of answer to comfort us until we could hear more on Monday.  When she called one of my surgeons, he told her he was “not overly concerned.”  He’s one of the best doctors in the country and even studied with the “pioneer” of liver transplantation.  His comment relieves me.

That’s pretty much all I have for now.  Please continue your prayers that this goes away quickly and of course, safely.  This has been a rough road, but it could be worse.  I’m so grateful for your prayers thus far which I truly believe have kept me alive.

Love,

Amanda

Good News

In preparing for my 3-month-scan and labs to make sure the tumor that triggered my transplant hadn’t returned, I found two journal articles.  (Yes, I’m a nursing student who has a penchant for research.)  I read Getting a Handle on Posttransplant Recurrence of HCC and Adjuvant Treatment After Orthotopic Liver Transplantation: Is It Really Necessary?, the second of which I noticed was co-written by the surgeon who performed my transplant.  Very cool.  And regarding my labs, I wasn’t exactly sure what “tumor markers” were, so I brushed up at the National Cancer Institute.

My own personal conclusion was that I had/have a low recurrence rate due to the characteristics of my tumor.  That calmed my nerves, so we were off to a good start.

This morning I had my CAT scan followed by labs to screen for “tumor markers.”  If you’re interested in medicine, check the link above.  If not, suffice it to say they’re something in your blood that can signal whether or not there is a tumor present in your body.  

By afternoon, most of the scans had been read and the conclusions of 3 surgeons were this: (And yes, this was complete news to me.)  No where in any of my tests, labs, reports, etc. did it ever say the tumor (which was found in May) was definitely cancer.  Due to the location of the tumor, it could not be biopsied and diagnosed as cancerous or benign.  Therefore, it was assumed to be cancerous, specifically hepatocellular carcinoma to err on the side of caution.  Remember, it was never in fact proven.  In June, I received chemoembolization, chemo directly targeted at the tumor and not the rest of my body.  When my old liver was removed September 1, some lymph nodes were screened for cancer, and none was found.  To sum all of that up, my tumor may have been completely benign.  Yes, it may have been cancerous, and the chemo may have just cured it. But the catch is this, chemoembolization is rarely successful with just one treatment.  We will never know which the tumor was, so even if I am at risk of recurrence or any kind of cancer coming back, it’s a very small risk.  Because it may not have ever been there.

That was a lot to take in while it was a relief as well.  The day after I had the scan that found the tumor, my doctor said it was cancer.  It would have been nice to know that she wasn’t sure and had no way of knowing from the location of the tumor.

But I digress.

The scans today were completely clean, and because of that and the realization the tumor likely was not ever cancerous, I’m now off the protocol treatment and don’t have to get scanned for another 6 months, then every year for 5 years.  That’s a lot better than 3x/year for 5 years.  And it’s so much better to know that the tumor wasn’t positively cancer.  They can never say never since nothing was proven or tested either way, but the tumor was likely non-cancerous.

Sigh of relief.

So God is good, and while we don’t have answers to a lot of things, I really do believe that everything happens for a reason and works out for good.  Somehow I beginning to believe the people who say I’m a walking miracle.

Thank you for your prayers, Tweets, comments, emails, texts… I felt so supported and at peace today.

Love always,
Amanda

PS – My WBC and platelets are still low (we’re watching them to see what might be the cause) but my liver numbers are all perfect.  I don’t know if they’ve ever been perfect.  So grateful.

Pre-op Photos

Pre-op pictures.  (Remember, we got called in at 1:30am and they didn’t take me to surgery until after dinner time!)

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Trish RN gives it a thumbs up!

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Too early! Where is my lip gloss?

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Waiting up all night!

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Part of my liver team including Peter & Karen

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My sweet surgeon, Dr. Fred. (Frederico Aucejo)

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Lisa my social worker and I.  I love her!tumblr_l8m9ueaLM91qc81o3o1_1280

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A hug for Jen to last through surgery!

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Me and my “transport” friend

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Last time with my family before surgery!

In over our heads

Seeing we just returned from Florida on Saturday, May 22, regular testing at the Clinic on Monday and meeting with my long-time pediatric hepatologist on Tuesday was a little stressful.  Then, we found out the testing revealed my liver needs to come out now, and in a matter of a discussion lasting for under an hour, our lives were turned completely inside out.  My doctor and I have a close relationship, and she fought back tears as my mom broke down.  I knew then, that we were forced onto a journey that we didn’t ever believe would happen to “us,” a journey that we ultimately will never forget.

Wednesday was a matter of the transplant coordinators figuring out how to schedule the “cornerstone” appointments of anesthesia, social work, surgeon, and hepatologist around completing testing like EKGs, ABGs, a dozen of physician consults, and meeting everyone from social workers to psychiatrists to anesthesiologists.  In no time, they had me scheduled to spend Thursday and Friday attending a long checklist of appointments and tests, with a much needed long weekend (Memorial Day), followed by intense Tuesday and Wednesday schedules.  And then I’m done.  Or so they say.

Monday’s tests were an abdomen ultrasound and a contrast MRCP (a form of MRI)  The new venous collaterals and mysterious tumor sent up a million red flags, and on Tuesday, my doctor told me how important it was that we expedite the pre-transplant work up and get the liver out ASAP.  As I’ve said, she was excited about the outcome and thinks my life will be something I’ve never known before.  I’ll feel good, have energy, and be able to really live.  Being sick since age 5, I just won’t have any idea what it’s like.  I like the idea of it though!

In between telling our close friends and family, the next few days were just rough.  

Thursday was by far the craziest day of pre-transplant prep – it was painful, it was long, and we had a ton amount of information thrown at us.

5:45am: Leave for Cleveland
7am: Laboratory – about 30 vials of blood pretty much drained my energy
7:40: Adult gastroenterologist consult
8:30 Financial specialist
9am: Radiology and surgeon consult 
10am: Chest X-ray (which got pushed to late afternoon)
10:30am: EKG  (which also got pushed to late afternoon)
11am: Pulmonary function testing
11:30am: Transplant coordinator
12:30pm:  Computerized health questionnaire
1pm: Infectious disease
2:30pm: Arterial blood gas testing (PAIN) 

Friday was a little better…

The day began at 7:30am when I got radioactive dye injected into my vein for later bone imaging.
8:30am: Lisa, social worker
10:30am: Bone scan to check for any movement of the tumor
HOME early!

I chilled like crazy all weekend, as fatigue is my biggest symptom and I don’t bounce back too well from long days.

Next week, I’ll be meeting with a hem-onc, a women’s health CNP, an anesthesia specialist, and there will be a large teaching session where we will be drilled in the As-Zs of a liver transplant.

I’m a little thankful I’m too tired to care much about this.  Otherwise I think I might be a mess.   Plus God is carrying us right now, I can feel it.  Plus this isn’t quite reality yet.

Love to you all.