An update and an invitation

It’s been so long since my last update. I’ve been busy enjoying life and, oh, just getting engaged to my best friend and biggest, sweetest supporter. 🙂 We are getting married in the spring, and we couldn’t be more excited.

View More: http://footstepsphotography.pass.us/goodwinengagement

I’m nearing four years with my new liver, and it is so healthy. I only have one more year of the hepatocellular carcinoma protocol and then I’m officially in the clear. I’m doing well since my last major surgery last August and the reconstruction has not only helped cosmetically but it has radically eliminated my adhesion pain. If you have had multiple whole-abdominal surgeries like I have and you suffer from pain from adhesions (or undiagnosed, piercing abdominal pain) please look into this. Insurance covered mine since it was done for medical reasons (adhesion pain). Before the surgery, I was going to the ER regularly for sharp, overwhelming abdominal pain, and I haven’t had to go in at all since the surgery. The surgery was pretty major, lots of staples (or was it stitches? I don’t remember), and I ended up in the ICU afterward due to almost going into sepsis, but the pain was completely worth it. I’d do it again in a heartbeat.

As I’m on immunosuppressants to prevent my body from rejecting my liver and suffer from a few chronic illnesses, my immune system is pretty weak. I have always been regularly sick, frequently on antibiotics, etc. I finally got fed up and saw a renowned ENT (ear nose throat) doctor at the Cleveland Clinic, Dr. Geelan-Hansen. After one look in my throat, she suggested that she remove my tonsils. I had been told before that they were “cryptic tonsils,” which means that they were so swollen they would rest on the back of my throat. She told me it would be two weeks of the worst pain in my life (that’s a LOT of serious pain to beat!) and to stock up on all of the soft, cold foods I could find. I was afraid of what could possibly be more painful than a liver transplant but was pleasantly surprised how minimal the pain was. Eating Jell-O, ice cream, and oatmeal for two weeks in January was far worse than enduring the pain. However, my throat has not hurt a single time since recovery from surgery, and that is a big accomplishment for me!

I found myself calling Dr. Geelan-Hansen again this spring after half a dozen ear infections, and we decided to add tubes to my ears as well. This happened a couple weeks ago. Ear tubes help fluid drain out of ears rather than sit around and cause infections, and so far, I’m enjoying no more ear infections! I had them inserted under general anesthesia, and I’m definitely glad I did that as the post-op pain was pretty bad for about a day.

I have been so much better, as far as getting sick goes, since both surgeries.

Around the time of the tonsillectomy, I was getting overly upset about my chronic pain. Every single day, I was in excruciating pain, and anything I did just made it worse. As I’ve mentioned before, I have tried every single pain relief option (medication or treatment such as massage/physical therapy) for years and nothing has worked enough to continue it. A friend recommended that I see a local rheumatologist who almost cured her pain, but I had procrastinated because I didn’t think the doctor would be able to make much of a difference. This winter, I decided it couldn’t hurt to try. Dr. Azem was so compassionate and kind and also a genius. After one look at me, she had several points of evidence that I had psoriatic arthritis. She ordered some labs to rule out other things and upon a second visit, she confirmed the diagnosis. It’s basically an autoimmune form of arthritis that produces severely painful, swollen joints. It typically causes psoriasis, too, which is a skin disorder, but thankfully I don’t suffer from those symptoms at this time. So while I didn’t need any more diagnoses, I was happy that we now had some new treatment options to consider.

Between careful discussions with both my rheumatologist and my transplant team, we decided a drug called a biologic would be the best first course of treatment for my PsA. There are several biologics, all taken via injection or through an intravenous line (IV), and my doctor thought Enbrel would be the best treatment for to start with. I have been injecting myself weekly with Enbrel for around four months now, and I’m happy to say my pain has decreased. It hasn’t been a miracle drug, but I have noticed a difference in my pain levels. I am so thrilled to report that. The shots burn pretty badly, and I’m no baby when it comes to pain, but 30 minutes of icing my leg before the injection helps a little bit. I have some other ideas on reducing injection pain that I will share later after I try them.

I’m also experimenting with natural remedies like super foods and essential oils which I am loving and will share once I try a few more things I have in progress.

The PsA flare ups are horrible. (I have been having them before the diagnosis but I considered them to be fibromyalgia flares.) Flares are a short time (weeks/month) when the pain is completely out of control, and they come from absolutely no where without any warning. I’m thankful that there is also a treatment for PsA flares – steroids and pain medications. Steroids, while definitely not a drug I would choose to take, decrease the inflammation, and the non-narcotic prescription pain medications take the edge off.

Compared to my health at certain times in the past, I am so great. No big surgeries, no more chemo, no more balancing on the tightrope over death. I really couldn’t ask for anything more than I have now, both physically and in my personal life. Of course I sometimes still struggle with my new normal, and I wish I had as much energy or as low pain as “average” people, but this is my reality. This is what God has given me, and it’s my job to make the best of it and inspire others with the provision He has given me throughout the past 22 years of illness. Each day, I think of how much I owe to my organ donor for so many more opportunities to live my life to the fullest. I wish I could repay him in some way, so I just pray for his family and hope to meet him in heaven one day. He is my angel.

1100513_214141629102072

Also, it’s that time of year again!! It’s my team’s 4th annual Lifebanc Gift of Life Walk & Run at Blossom Music Center! So far, we are going to surpass our record for biggest team in our team’s history! I am so blessed to have such a great support system to support such a life-changing organization as well as the fact that I’m alive because someone said “YES” to organ donation. Please click here to view more information. I am officially inviting you to be a part of a truly fun, exciting morning. Please consider joining our team or even donating the cost of tomorrow’s latte for the cause of organ donation in Northeast Ohio!

Love to you all.

A gift

Stacy Kramer, and TED, thank you so much for this.

I wouldn’t change my experience.  It profoundly altered my life in ways I didn’t expect… So the next time you’re faced with something that is unexpected, unwanted, and uncertain, consider, it just may be a gift.

Stacy Kramer, brain tumor survivor, so eloquently told the story I’ve relayed to countless individuals.  I think a lot of us who endure life-threatening illness come out to see what a gift it was.  As I’m sure it was for her too, many of my nights were sleepless; there was a lot of pain. I wondered a million times Why me? How can I get out of this? Please, can someone make this stop?!  But standing on the other side of the whole ordeal, as I am now, it’s so much easier to see how the longest days would make me a better person in all the ways I needed, introduce me to hundreds of people I could learn from or impact, and teach me that there is more to life than anyone ever had thought.

So grateful for my gift.  I wouldn’t wish it upon you (you wouldn’t be able to see it was a gift until it was all over anyways), but I’m thankful to God that he brought my scariest, darkest, most painful experiences into something I’m now so grateful for.  May His light keep shining through the darkness.

Gifts, grace & gratitude

When someone dies so you can live, it has a profound impact.

Look at our faith.

God gave His Son to die so that we are forgiven – John 3.16, one of the most popular Scriptures of all time. Yet do we really understand the simplicity and complexity of it? We love Him because He first loved us; it almost seems hard not to. We may feel forever indebted to Him, yet we could never repay the gift. So we try our best to live up to what has been given to us, the blessing and securities of life here on earth, and more importantly, the eternal life we have to come. All because we did nothing, and He gave everything.

After I received my liver August 31, 2010, something similar happened. While this temporal life isn’t nearly as important as the gift of the eternal life and the heaven our Lord has in store for us, I believe it is the next highest gift one could ever receive. Yes, God numbers our breaths, but the gift of life is God’s way of extending them. And what a donor family chose to do for a stranger – someone possibly not even worthy of such a gift – is so selfless. My donor family lost their son and chose to help others through their tragedy. Not much is more beautiful than this. Again, I did nothing and received everything. Perhaps I wasn’t even worthy. What makes one worthy of a second chance at life, anyways? And how to we repay such a gift? Again, I don’t think we ever could.

How undeserving we are of the gifts the Lord gives us, yet how much more grateful are we to realize this?

This is the beauty of grace.

Will you join me on August 3rd in my annual Lifebanc Gift of Life walk/run team honoring our donors, our recipients, and the families that chose to give life? My three-year transplant anniversary is August 31, and this is a milestone. I’ve gone through so much, but I’m doing so well. I savor each day, each new experience, hoping my donor is looking down and smiling. I received one of the most tragically beautiful, profound gifts, and my miracle is my existence. I’m so grateful, and I’m asking you to celebrate with me. Three years… I’m speechless, in awe of sacrifice and providence.

2012 Lifebanc Gift of Life Walk & Run

I humbly invite you to consider supporting my team this year. We have a lot of fun, and the event is so beautiful. You can sign up or make a donation <<right here>>. We are grateful for each and every one of you. You are our friends, our family, and precious strangers who care. You all are my gifts, and I could not have made it this far without you.

Full of love and gratitude,
Amanda

A road trip, visitors & a splenectomy

It’s 10pm Wednesday night.

I’m sitting in a wheelchair in the backseat of an ambulance being driven by an attractive EMT.  We’re driving on the highway, under the stars, talking about life, love, roadblocks, choices and pain.

He controls my temperature and the car stereo system while he speaks words far more valuable than the gas in his tank or equipment in his trunk.

I’m excited yet petrified to be going to the Clinic.

Excited because it’s my favorite hospital, excited because my doctors are here, and excited because there’s a chance I will be on the transplant unit, able to see some special familiar faces.

Petrified because this is my last chance for answers on my low WBC and platelets. Scared because the next couple days are critical to the rest of my life.

I’m finding out – once and for all – if I need a splenectomy or not, if I want to deal with the side effects or even what those side effects may even be.

Forget the pneumonia hanging out in my chest… My problems now are much more important than that. Or maybe not – what if the worst – or praise the Lord, best! – is yet to be seen?

Either way,

Psalm 23.2-3
He maketh me to lie down in green pastures: he leadeth me beside the still waters.  He restoreth my soul: he leadeth me in the paths of righteousness for his name’s sake.

Amen.

And thank you for all of the sweet friends who came to see me pretty much all day today.  You are all so precious to me.  Thanks for all the words of prayer and thoughts of kindness coming at me from so many places.

Love love love
Amanda

You all are so good to me!

Hi everyone,

Just wanted to check in and say, yes, I’m alive!  I haven’t posted in a few days because things have been getting pretty crazy over here while I’m starting to feel better and have my driving privileges back!  🙂  (And what part of that would honestly shock you?)

Health-wise, my incision is SO close to being closed… just a few more days, I’m guessing.  I’m losing a ton of weight due to the meds and my body’s adjusting – I’m just not that hungry.  Ever.  I’m going to call the team about it this week.  I bought all new clothes, and now even they are getting to be too big.  I’m honestly a little worried since I’ve lost over 20 pounds compared to where I was before the surgery.  We’ll see…

I’ve also been working on getting my sleep adjusted.  I have to be on steroids for life since what I had before the transplant (PSC) is anti-immune, and steroids can prevent it from coming back.  If I would have had something not anti-immune, like hepatitis, for example, I wouldn’t have to be on steroids, but unfortunately PSC can definitely be anti-immune.  And a major side effect of the steroids, even though I’m at the lowest dose, is that it can keep you wide awake.  I take it in the morning, and I’m still wide awake at night, so we’re trying sleeping pills, “sleep hygiene” (eg, don’t do anything in bed but sleep – no TV watching!, don’t do anything intense before bed, drink warm milk, etc…) and lots of other fun stuff to combat that.

In much happier news, I wanted to thank a sweet new friend I made on etsy who made me this beautiful quilt and sent it to me all the way from Pennsylvania.  Check out her shop or order a custom quilt!  What a blessing from a sweet sister in Christ.  Thank you so much Courtney!  It’s perfect and so warm and cozy, too!  🙂

quilt1

quilt2

Then, my 1st grade teacher Mrs. H. sent me a goodie basket complete with homemade buckeyes, Hershey kisses, homemade apple butter, and all kinds of good stuff!  She has been so supportive since I started this journey, and she was one of the best teachers I’ve had in my whole educational life.  I’m so glad we’re still in touch!

applebutter

jan

Check back Monday because it’s a special date and I’ll have a post up.

And check out the homepage of TRIO (Transplant Recipients International Organization) – they used a photo from the Akron-Canton chapter of TRIO’s website (which I made!) and it’s of me and my TRIO friends at the LifeBanc walk/run last summer.  We’re now internationally famous, haha.

Have a great weekend!  It’s super chilly and cloudy here in Ohio.  Almost all the leaves have fallen, and I’m so excited to get my pink tree and Willow Tree nativity set up in just a few weeks!  Also, I start nannying again this week and am so excited to be with my kiddos again.

Don’t forget to check back Monday.

Love to you all,
Amanda

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…

IMG_0918fsx

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!)

IMG_0923fsxIMG_0928fsx

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 🙂

IMG_0935fsx

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!

IMG_0941fsx