Milestones

Wednesday’s Liver Clinic went very well.  It was a good visit with the surgeons (including Dr. Peter!) and my coordinators, Molly and Christine.  Plus, I got some very good news.  I think bringing them a box full of brown butter pumpkin spice cookies didn’t hurt either.  🙂

First off, instead of weekly visits, this was my first “second week” visit, and instead of coming back in another two weeks, they let me schedule my next visit four weeks out!  Yay!

Next, they liked my split-open incision since it’s healing so well.  (Slowly, but surely!)  We’re still doing wet to dry dressings twice a day, and probably will for a few more weeks, but they’re working!

Unfortunately, my Prograf (immunosuppressant medication) blood serum had gone from 5 weeks steady to a quick decreasing, so the docs had to increase my dose from 1mg to 2mg.  I’m not happy about that, but they say it all depends on blood level, so my Prograf side effects shouldn’t increase.  We’ll see.

But more good news – the surgeon who did my surgery wasn’t there Wednesday, so I got to see another (plus my favorite resident Peter!)  Apparently, this doctor was pretty lenient because most docs stick to a 3-months-post-op no driving rule, and some even go towards 4 months, but this doctor told me since I’m off pain meds and doing well, I can slowly ease back into driving again!   At just 6 weeks!  He said to practice driving with someone – just around the neighborhood, etc. to make sure it wasn’t painful and I was comfortable with it, so last night, Mom got in the car and watched me drive… Yes, just like we did almost 7 years ago (when I first learned to drive!).  I was a stellar driver, and pushing the pedals didn’t hurt my stomach, so I passed and am once again a driving citizen.  Hooray!

Oh, and labs – I’m officially onto weekly labs instead of twice/week labs!  My arms will surely appreciate that.  Plus I will be able to sleep in a little later now an extra day a week!  Since the surgery, it seems like every week I’m sleeping more and more, but the docs say it’s perfectly normal and will get better.  I have a hard time falling asleep because of the steroids, but once I’m asleep, I’m gone … and for a lonnng time!

So lots of “ups” on Wednesday.  I can’t believe I’m past 6 weeks.

After each visit, we eat in the huge wide-selection, all-healthy-foods cafeteria, but before we ate on Wednesday, we went to the Clinic’s new(er) Kelvin & Eleanor Smith Rooftop Terrace on top of the Miller Family Pavilion.  I had been to the Clinic so many times and never made the time to get up there, and apparently it had “breathtaking skyline views” and was a beautiful, relaxing place where lots of activities took place like yoga, chair massages…. just sounded nice.  Anyways, when I was in the hospital, everyone who visited me always seemed to go there, the on-hold message I get every time I call someone at the Clinic tells me about it, and I just figured any good, full-time Clinic patient needed to see what it was all about.  Plus, it’s not that “new” anymore, so my absence was feeling pathetic.  It was really pretty – not quite what I was expecting.  It has a serene indoor part and then you can walk outside and see the entire Cleveland skyline.  I tried to take a picture, but no matter where I went, I had to be behind glass and this pole was always in the way.  Anyways, here’s our lovely smog-covered, typical-gloomy-skied city of Cleveland…

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And, I had to take this picture of my mom – she looks so cute, doesn’t she?  And then she had to take a picture of me, which is just here out of theory.  It’s not a particular favorite!  I desperately need a hair cut!  (We’ve been handling other priorities lately!)

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Yesterday, I went out with a friend to see a movie, and afterwards I went over to her house and played with her boys (the two I’ve babysat – and adored – since birth!)  Then my Poppop and my other friend came over and Mom made dinner.  It’s so nice catching up with everyone and feeling like I’m “a part of life” again.  Each day is getting better.

Here’s me and my boys 🙂

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Today I had an appointment with my pain management doctor whom I’ve seen for almost 2 years.  They stopped my fibromyalgia and back pain meds with the transplant, and I definitely need some help now that the focus is off the transplant pain.  She’s head of pain management at the Cleveland Clinic’s Hillcrest Hospital, and she’s also an anesthesiologist.  She’s really good and really kind.  She volunteers with all these youth organizations and really gets involved with presentations, giving back, etc.  I’m so happy I found her. Anyways, she had a cancellation and was able to see me today, and we’re trying to get some fibromyalgia meds back onboard, although it’s so hard because everything I take (even over the counter!) has to be cleared through my transplant coordinator who clears anything questionable with the transplant pharmacist.  The reason is, drugs can alter my other medications (like my antirejection/immunosuppressants) and that could cause rejection, so this new post-transplant life includes being really careful about medications.  It’s annoying, but important.  Also, a side effect of one of the immunosuppressants is kidney damage, so we have to be careful with meds cleared through my kidneys, too.  Thankfully my kidney-related blood levels have been really good, but they’re still very cautious…  (Oh, and the long term steroids can cause bone problems like loss and osteoporosis, and the immunosuppressants make me more susceptible to cancers like skin cancer!  That’s why I don’t like being on these new meds.  But it’s that or die – literally – so I shall cooperate!)

Before my appointment, I shopped at Beachwood, and Mom picked up Panera while I was in with the doctor (yum!), and then she dropped me home where I grabbed my car to exercise my long-missed driving privileges!  I had an interview with a new nanny family, and then I dropped off and picked up my new meds at Target, went to Macy’s, and pretty much wore myself out.  (Who had a feeling that would happen?)

I wanted to share all these great things with all of you who have followed my journey so closely.  Thanks for your care and prayers!  Never ever forget where you started and how far you’ve come.  I know I won’t.  🙂

Amanda

PS – Thanks for all the love – this was a such a sweet surprise this week from my friend and her parents!  Yum!

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When His people pray…

As I told you the other day, my liver numbers were all over the place in last Thursday’s labs.  They were precautioning rejection, going over what might happen, treatment options, etc.  Needless to say, we were scared.  Acute rejection is 100% reversible especially as a healthy liver regenerates, and acute rejection is of no fault of the patient, but still.  It’s not something you want to hear or deal with, especially right out of the gate. 

THANK you for all who lifted me up in prayer last weekend.  We had big faith, and I got a phone call from my coordinator Molly after she got Monday’s labs.  “I’m not sure what to tell you, Amanda, but the numbers have all come down.”  She started listing liver enzymes, telling me what they were, what they are now, and where the normal limits were.  We’re not talking about them going down a few points – a few went down by 50s and 100s, all headed back to normal.  Knowing full well what the answer was, I asked, “So is this normal, for the numbers just to go back to normal all of a sudden after diving so low?  What caused this?”  Now I love Molly, but this seemed to stump her.  “No, not really.  I really don’t know how this happened.  Maybe things just straightened out on their own.  But at this point, we’re not going to worry about anything.”  I knew better – Prayer changed those numbers.

At this point, I really don’t think anything is too big for God because He has continued to take care of me, and this road has not been without bumps and obstacles and sharp turns.  I hope you, too, can see His hand working and believe in His love and grace.  He cares for His children.

Liver clinic tomorrow… then an appointment with infectious disease to go over vaccinations/childcare and learn anything special I’ll need to be careful about when I return to nannying.  Plus we have to clear something else with them, and my future little girl’s parents will be traveling to Africa, so we need to make sure none of the vaccinations or medications will impact me since I’m immunocompromised.  The most exciting part of tomorrow will be getting the rest of my staples out.  They are tugging and pulling nonstop, and that’s even after Peter took half of them out last week.  I think once they’re all out, the incision will start healing better on it’s own.  They’re also removing the drain sutures they put back in, so let’s pray one of them doesn’t start to leak again and end up with me in the ER like last week!  And best of all, with the sutures gone, less pain, I’m hoping I’m up to more visitors (had to cancel a couple this week so far) and – most exciting to me – I’m hoping to be up to seeing my kiddos.  The doctors said I could anytime, but I’d like my staples to be gone and be a little less in constant pain before my plethora of itty bitties – ages newborn through 8 year old – bring their vivacious energy to me.  Keep in mind I’ve been in pain on the sofa or in the hospital for a month.  The most action I’ve had is Grey’s Anatomy on DVD or someone stopping by with dinner or a short visit.  Gotta get my strength up for my kiddos.  🙂

Please help me pray tomorrow goes well and this pain goes away.  It’s mainly from the incision, and now intense back pain has appeared.  The doctors said it’s from the retractors they had to put in me during surgery – they put two in you.  One stretches your abdomen wide open and keeps it that way for 8 hours, and the other pulls up and out on your rib cage to give them even more room.  8 hours of pulling up and out on your rib cage doesn’t sound pleasant, and I’m realizing it doesn’t feel so great either.  One of my friends whom I met on Twitter (we have so much in common  – she’s my age, a nurse, and just had a transplant last November) has mentioned a few times her terrible back pain.  I guess it’s common, but when you think about that retractor, those things are rough.  I’m curious to see how my car wreck back pain merges with the transplant back pain once my stomach is back to normal and I’m trying to lead a normal life.  Let’s start praying about that one because I can’t imagine having worse back pain than I did before surgery!  🙂

I want to spend another minute thanking all of you – the cards are still pouring in.  I started putting them all in a gift bag, but it’s almost so over-packed I could probably only get a couple more in.  (Time for a box! lol) And not just the cards – I’ve gotten so many gift cards, flowers, planters, balloons, stuffed animals – even a sock monkey! – clothes (from my sitting mamas – they know abdominal surgery = swelling = maternity clothes! ha!), meals, Vera Bradley goodies, cash, postcards, even a puzzle (perfect for recuperating at home!) Then the emails, comments, those of you who have put my address on your church’s prayer/card list… it’s just been unbelievable the love and support I’m getting every single day.  I couldn’t ever do enough to thank you for everything each one of you has done for me, but I pray for God to bless you as you’ve blessed me, and sometime down the line when I have the opportunity to be a blessing to you, you better believe I will be there.  As I often say, we’re all in this together.

Love to you all – my friends – new and old, my sweet family, everyone who has merely thought about me during the past 4 months all the way to those who visit and check on me and make sure no need is wanting.  Thank you from the bottom of my heart.
Amanda

Zoo with the Boys

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For my birthday, I went to the zoo with Shan and the boys.  Bryce & Declan treated me to their rendition of “Happy Birthday,” too…  I love these guys!

Thanks to everyone for all the cards, gifts, emails, and sweet wishes you’ve been sending.  We’re having a little party on Wednesday, and I’m looking forward to being with family and friends.

In transplant news, I’m #3 on the list, but I need a very small liver.  There’s a handful more summer events I hope to be here for, but at the same time, I’m really itching to get this surgery over with…

Love to you all,
Amanda