Grateful

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I am so deeply grateful to be celebrating my fourth “transplantaversary” today. Yesterday marks the day I entered surgery to receive a new liver, and today marks the day that I awoke for the first time with new life within me.

Without my gift of life, I wouldn’t have received the opportunity to love again, complete my education, visit new countries across the world, become a godmother, meet new friends, touch more lives, or savor every ordinary day.

The journey has – at times – been treacherous and almost too much to bear. There has been fear and pain. But today, I live a beautiful, charmed life that has only been possible due to the generous gift of my organ donor and his family and the support of my family, friend, and even strangers around the world.  There aren’t enough words to express my gratitude.

Please consider signing up to be an organ donor, if you’re not already. It’s a pretty simple, yet empowering thing.  Just go to this website and sign up. Next time you renew your license, make sure that they put the tiny heart symbol on it, signifying your wishes. And most importantly, tell your family so they can authorize it when you’re not longer able to do so yourself.  120,000 people are waiting for what a lot of us take for granted.  18 of them die each day because there aren’t enough organ donors.  By signing up to be a donor, you can save up to 8 lives and heal up to 50.  Once you die, you won’t need any of your organs anymore, so why not share them with someone less fortunate than you? Think about it…  Feel free to contact me with any questions you may have.

With love and gratitude,

Amanda

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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.

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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.

Not them

It was a wonderful Saturday with my mentor, Rita, as we sat down for another quiet yet passionate discussion about the blessings we receive or the issues we face.  Rita is special to me as she is the mother of a friend I grew up with at school since first grade, and she was my seventh grade science teacher.  We had not seen each other in years, and we were purposefully matched together in a mentoring program.  God had a hand in the match up as we have strikingly similar personalities, struggles, and challenges.  Rita has gone through many relationship and health obstacles and has fought through everything with grace and beauty.  She has much insight on suffering and living fully despite it, noticing God’s blessings each step of the way.

Rita

And so on this particular day, I mentioned to her how I’ve been in heightened realization of my physical weaknesses lately. I told her how I’ve felt opposition from a couple of individuals as they sometimes judge me independent of my pain and fatigue, my daily struggle to live as normal of a life as possible for a patient with fibromyalgia, chronic pain, and a past of 17 years of liver disease ending with a liver transplant and two subsequent surgeries. I bemoaned how I deeply wish they could see my point of view, how desperately hard I want them to realize what I deal with each day so they could tread more cautiously and deliberately.  Of course, I meant it figuratively as in wishing they could just imagine what kind of physical and emotional pain I deal with and how my various thresholds can be so challenged at times.

Pausing to choose her words and then in her gentlest voice, she said this to me.

At times, we so greatly wish for people to see where we walk, yet at the same time, we try harder to hide it from them and pray in the depths of our hearts that they will never truly know what we experience.

As frustrating as it is, I am realizing it’s a good thing these people cannot relate to me because to be able to fully do so, they would have had to not only journey beside me through the years as they have done so diligently, but rather physically suffer through exactly what I have over the years.

My mind stopped immediately at this realization.  I whispered intently, “I wouldn’t wish this on my worst enemy.”

“Yes,” she continued. “There are times I cannot even tell my daughter exactly what I’m going through. It would kill her to know.”

Oh how true. For example, I have been protecting my these loved ones, shielding them from the worst, ever since I was in elementary school. They don’t know this, and I don’t even want to tell them now. To hide things like this from people so close almost sounds like a punishable wrongdoing. Yet we continue on in order to protect our loved ones, and we hold our breath hoping and praying they will never go through what we have, no not possibly that. Not this. Not anyone, but especially not them.

And so I proceed, journey on, more tolerant of their judgments, tempers, and inability to understand as I strive to daily thank the Lord that they just can’t comprehend what I’ve endured.

It’s not easy; I will assure you of that.  But when you love people, it’s really the only option.

May we take pleasure in our sufferings as they draw us nearer to our Lord and Him to us. He has willingly been through anything we could ever face in life just so He can truly, 100% understand what it feels like and in the meantime, guide us triumphantly to the other side.

It’s been 18 months since that day… and I just wanted to thank all of you for standing by me.  My sister and I just had a really fun weekend, and I wanted to share with you just how healthy I look, 18 months post-transplant.  For those who may be reading and are contemplating a transplant or see it looming in the horizon, you will be okay.  Things will be hard and some days a challenge, but the battle will make each moment of life just that much more sweet.

I love you all,
Amanda

8 Months – News & Prayer Requests

Hi everyone,

Yesterday marks my 8-month transplant anniversary. In important news, this year’s Lifebanc Gift of Life Walk & Run is going to be Sunday, August 13 at 7:30am I don’t have my leaders’ guide yet, but I will be leading a team. I hope to have double the participants as last year so write it on your calendar, invite a friend, and stay tuned for an information statement here – probably in a month or so. Here is last year’s campaign page – Gift of Life Walk & Run! as well as photos/video about last year’s event – if you’d like an idea of what this is all about. This year I will have 365 more things to be grateful about, and a donor to honor, so it’s my dream and goal to get double participation.

So news about me. If you’re here, you probably are interested. 🙂 I have a few people checking in via email and social networks, and this is your update. To be candidly honest, I am not feeling that well right now and am extremely overextended with school and obligations, so please let this be your update. My inbox is so behind right now, you don’t even want to know! I love you all, I just am not physically up to all I want to do at the moment.

There is so much going on right now, I don’t even know where to start!

Since March and throughout April, I have had 4 trips to the ER, have seen 2 new specialists, 2 MRIs, 1 CT scan, and numerous other tests.

I desperately want to tell you how well I’ve been feeling and how amazing this new life is, but I can’t do that this time.

See, a lot of you – myself included – may have thought post-transplant life would have to be amazing – easy, even.  Low key.  Healthy.  Fewer meds.  More energy.  Healthy.

One day, I’ll get there.  But not today.

Sure, I have to think of where I was before my surgery.  I had so many other diagnoses along with liver disease, and a tumor to go with it, so thinking one surgery would cure my life was foolish.  Yes, I have a healthy liver now.  That’s amazing.  But I still have back pain, fatigue, and fibromyalgia, with the addition of medication side effects, a low immune system, chronic neutropenia (low white blood cell count, in my case – 1.5 – critical), and newly, degenerative disc disorder and arthritis in my back.  I have to go to the hospital with practically every new problem that arises, even if I’m just sick with a virus or dehydrated.  I get a new specialist over ever issue, because my transplant team acts like my body is a gold box housing a diamond, a donated liver, a rare treasure to guard like it’s the most important thing in the world.  I agree, this gift is priceless, but I think sometimes they go to the extreme.

Either way, this is my life now, and 8 months later, you’d think I’d be able to cope with it.  Sometimes I wish I had my surgery when I was a lot younger so I wouldn’t know what kind of life to compare it to.  Maybe this would be normal to me.  Or maybe my idea of normal life is skewed from being a victim of childhood chronic illness.  What if this is the best it ever was, or ever will get?

I’m trying to be okay with that.

The other week, I had many doctors appointments to figure out some more issues going on with my crazy body, and since then, we are still trying to get on the path to answers.

First, throw in a virus that had me to my PCP twice, ER twice, and required 2 types of antibiotics.  Not fun.

Then, the “big thing” right now – we are consulting with a hematologist/oncologist about my chronic neutropenia and thrombocytopenia (low white blood cell levels – “critical,” even, and low platelet levels).  Last week, I had several labs done for oncology and a CT scan for them.  The doctors have also ordered a bone marrow biopsy, as well, which is my absolute last choice for anything.  More on that another time.

Last week, a home care nurse stopped by to teach me how to administer pentamidine treatments to myself at home.  Because my white cell count is so low, I’m at risk for PCP pneumonia, one of the most dangerous kinds of pneumonia, so I have to get these monthly treatments now.  They taste really bad, hurt my throat, and make my voice hoarse, but at this present time, I don’t have a choice. It’s also scary why I have to get them.

All of that said, my good news is that I’m going to Disney World tomorrow – hopefully – followed by 2 weeks in Ireland with my nursing school.  I’m hoping I’ll be up for both trips.  If I can just have improved health during this month – nothing more – that’s really all I want.  I’ve been especially dreaming of Ireland for a couple years now, so please pray for my one wish to come true.  I filled out my application, turned in reference letters, interviewed, got accepted, paid, bought rainboots, started packing… I’m so close to being there!  🙂 It’s such bad news that my WBCs are still so low. I’m waiting to hear from my infections disease/travel medicine specialist to confirm whether or not I can still go on these trips – I don’t think anyone was expecting my labs to get, and stay, this low. Not only do I sleep all day and am so weak, but I don’t have much of an immune system at all right now.

Despite it all, I’m forcing myself to still get out there and enjoy life so it doesn’t pass me by. I’m making desperate attempts to keep up with all the people I love, the friends I hold so close to my heart. And it always is such a wonderful thing to see how we, at our lowest, can care the most for others who are hurting. It’s an amazing part of this human suffering, and the times during which I am low, it’s so evident – and such a blessing – to me.

But the enjoyment of everything, the gratitude, are the only things keeping me sane right now. I was thrilled to be able to attend my precious cousin’s wedding a month ago as well as my little buddy’s karate testing – yellow belt!  I go out with my friends a lot and have still been able to go to church and Bible study – priorities! School hasn’t been going very well, but I can’t say I didn’t try. Fun in the works is my baby sister’s graduation party and my birthday in a few months.  I think because I’m a summer baby I have an extra passion for summer, and I’m making mental lists of all the things I want to do this year!  Last summer doesn’t count for too much but waiting on my liver.  Even though a year ago this month was the time my world was forever changed, I’m trying to focus on the good things that are all around, even if it’s just snuggling with my little Haylie, the anticipation of Ireland, or the feeling of seeing that perfect pair of shoes on the shelf. I love moments like those.  🙂  So everyone please spend the next week savoring the big and little moments, being passionately grateful, in and for your life.

So friends, this is your big update on all things in my health life. Thank you, thank you, thank you for all of your support.  Please pray I may have peace with everything no matter what happens as well as the purest form of gratitude for my new life highs and lows.

Love, love, love
Amanda

One night when I was really upset about all the confusion and pain going on around me, my mom wrote this Scripture down for me:

Be merciful unto me, O God, be merciful unto me: for my soul trusteth (taketh refuge) in thee: yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast.

Psalm 57.1

The waiting list

The Waiting List is an amazing website/project. It’s goal? By sharing the stories of people whose lives have been impacted by organ donation, our goal is to inspire the 65% of Americans not registered as organ donors to make the commitment for this final act of kindness.

What a huge goal, but also, what a deserving one.

The Waiting List

Their first photo project was How many pills do you take?

Waiting List - How Many Pills

So for whomever is interested or can in any way be impacted by this, here are the pills I currently take in one day, but I see it as a small price to pay for these 86400 seconds I had the opportunity to experience today.

Such a very, very small price to pay.

Pills

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!  🙂

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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!

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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