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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