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

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 

Home!

Well friends, I finally made it onto oral antibiotics (praise God!) and my WBC level increased so I was discharged on Saturday. I was excited to get out, and I was thankful I didn’t have to have a port inserted for IV antibiotics.  Also, I was so glad I didn’t have to sit around in the hospital until my counts raised.  Surprisingly two Neupogen injections rose my WBC from 1 to 4(!!)

I have been very weak this week and am very swollen for some reason, but I don’t have any pneumonia symptoms anymore.  I don’t think I ever really did, though – other than the fever and chills the day I got admitted into the hospital.  I’m grateful my symptoms weren’t worse than they were, and I’m also glad the pneumonia didn’t become life-threatening.  With my immunosuppressant medications, the illness could have easily gone out of control.

I was on so many medications last week that a lot of the details are sketchy, but I do remember some great doctors, nurses, and friends.  I remember all of my hospital visitors and Danielle spending 2 nights with me, sleeping in the uncomfortable chair.  The cards, flowers… they, like they were a year ago, helped keep me encouraged.  Thanks, everyone.

So once my oral antibiotics are finished (Saturday) I’ll be past the pneumonia, thank God.

Now, the next obstacle is the splenectomy.  Next week I’m meeting with one of my liver surgeons who is the best choice to take out my spleen.  I’m also meeting with my oncologist and my infectious disease doctors, too.  All three are involved in my case right now.  I’m hoping to have the surgery scheduled at my visit Monday, so we’ll see.  It’s a big surgery, and I cannot get it done laparoscopically since my spleen is so large holding all of my blood cells.  That means a long hospital stay, long recovery, more pain, and more destruction to my poor abdomen! I’m not excited about it, but if this is the answer to improving my low white blood cells (and low platelets) then I think it will be worth it.

I have had dangerously low platelets since I was diagnosed with liver disease as a kid, and after my transplant, my white blood cells completely took a dive to “critical level.”  Platelets enable your blood to clot, while white blood cells protect your body against infection.  Deficiencies in both are big deals, and with the platelets, we just hoped they’d improve with the transplant.  They did a little bit – more so in the beginning – but now they’re dropping.  Either way, the biggest issue is the white blood cells.  I caught pneumonia because of them, and now my doctors are wanting to get my spleen out now as it “sucks up” and hides all of the blood cells my body is needing.  The worry is I could catch something far more destructive than “just” pneumonia.  So without my spleen, nothing will be completely filled up with my blood cells, or so is our hopes.  And if this doesn’t work?  We’re pretty much out of options.

When I am afraid, I will trust in you.
Psalm 56.3

Just got back from the ER

With a platelet count of 25,000 (healthy levels are 150-400,000), I’ve been having serious bruising and nosebleeds lately.  Tonight, I called the liver coordinator on call at the Clinic and she said due to the extreme amount of clots coming out of my nose, I needed to go to the ER.  So there I went.  They treated me by doing labs and giving me Zofran for my nausea, and they soaked cotton balls in neosynephrine and put them in my nose for a long period of time until the lesions finally stopped bleeding.  

Needless to say, this was neither fun nor comfortable:

But they gave me Ativan and Zofran so it worked out.  🙂

Apparently, neosynephrine has a vasoconstrictive property which can be used for this purpose.  So, per doctors’ orders,  I’m now back to sleeping with the humidifier in my room (yes, even on July 31!) and being extra careful.  My platelets have never been this low, so this is not a positive thing.

Still waiting for my new liver…  I’m 3rd on the list, but remember I need a smaller one, probably from an adolescent.

Pray for strength and courage for us to keep waiting…  It’s getting harder each and every day.

Love to you all,

Amanda