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
Amanda's Journey 