Pre-op pictures. (Remember, we got called in at 1:30am and they didn’t take me to surgery until after dinner time!)
Trish RN gives it a thumbs up!
Too early! Where is my lip gloss?
Waiting up all night!
Part of my liver team including Peter & Karen
My sweet surgeon, Dr. Fred. (Frederico Aucejo)
Lisa my social worker and I. I love her!
A hug for Jen to last through surgery!
Me and my “transport” friend
Last time with my family before surgery!
Did you know I’ve been on the UNOS Region 10 A-positive (blood type) waiting list for 71 days now?
At first the doctors said “We’ll have you transplanted in 2-3 months. Quit school. Don’t work.” I panicked; I’d be behind. I need an income, plus I love my kids. And how was I going to be emotionally ready for this huge life transition in only a matter of weeks? Then I packed and read “The Binder.” (The overstuffed Liver Transplant binder the Clinic compiles and makes you read every word of) I dealt. I joined our local TRIO, a support group. I met friends online, even found a couple girls my age who had just had transplants and were now working as RNs – coincidentally just like I hope to be. We got the tumor, and we don’t think the cancer spread. The doctors say I have a poor quality of life so I need a new liver, they say I’ll have more energy than I know what to do with, but is that really possible? It scares me a little. This is all I know. I do the best I can and take each day at a time, as it comes, embracing it for the strength God gives me or the things I can find to do to keep busy.
Now, 71 days l later, I am weak, bored out of my mind, and I am tired of filling my schedule with trivial things, shopping which gets me into trouble, and organization projects which I guess are good, and a Netflix membership to pacify this unbelievable boredom. I have all the time in the world, yet lack the strength to do it. I’m 23, I should be in the beginnings of a great new job, working on building a family, watching the dreams I’ve worked so hard to achieve, come true.
I don’t want to stir anything up, but I think kids and young adults needing organ transplants – if we ignored severity of disease and risk of not having a transplant – should get extra “points” just because everyone else is old enough to already have a life, to already have a career, to already be married with kids, and sure those things may seem to make the process harder, but they’ve lived their life. They know if they achieved their dreams, they saw their hard work turn into a good life. But us? We’re only getting started. We had to push pause on every hope and dream we were stoically fighting for, never really knowing if we’d ever get “there” or not, while the rest of you already know. I’d rather go through this with a husband and a family and a career than not knowing if I’ll ever have those things. And of course both options are stressful. But right now I’m having a hard time with things. Not knowing if I’ll be able to go back to school in the spring. Not knowing if I should take these nursing textbooks to the basement or if I’ll need them soon. Not knowing if I’ll get my surgery early enough to take a nanny job in both November and February that I’m really looking forward to. Just not knowing … going from having a huge future at my fingertips to not knowing when I’ll even have a major life-changing surgery. Will I get a phone call, the phone call in the middle of the night? Or will it be during the day in November. Will it be snowing outside? Will it be that far from now??
But you know what, if there’s anything I am, I’m a fighter. Anyone who knows me knows that you might get a few meltdowns and tears, but underneath it all, I’ll fight for what I know is right with everything I have.
That said, I talked to my social worker on Monday and she said out of all the lists for all the organs and all the blood types, I am the smallest person registered, and therefore I need a small liver, which I’ve told you before. The tumor rules out a living donor liver, so I’m stuck waiting for some precious individual – just my size – to die and give me their liver. It’s morbid, but it’s how the process works. I asked her, “Honestly, how often do you see these small livers?” She explained that most of their liver patients aren’t that small in the first place, but she wouldn’t be surprised if it took up to a year for one to surface, although her hopes is that the little liver is here by the end of the year. I liked 2-3 months better, but now it looks like I could be living in limbo a handful of extra months. And that’s a lot of added stress, worrying, and unknown. So 2011, tomorrow, we really don’t know.
And those asking about my MELD score – it’s 22 and will go to 25 in 2 weeks, but at this point, my MELD is irrelevant because I’m #3 on my blood type list, and #1-2 are Status 7’s which means they’re too sick to be transplanted right now anyways, and my social worker shared with me that they are completely different sizes than me, so there is no competition. So basically, the first little liver in Region 10, barring another hospital taking it first, is going to be mine. (This is where being at the largest volume transplant center comes in at my advantage.) So, we just might have to wait a little longer than I thought.
Please join me and pray this liver comes soon. My social worker is hoping for a “busy holiday weekend” on Labor Day since deaths on summer holidays skyrocket, but rather than pray for that (it’s a little too specific for me to pray for people to die on a certain date!) just pray the perfect liver gets to me soon. Pray for peace in my heart and grace in the waiting. The unknown, the day to day not knowing is getting so hard.
I love you all,
Amanda
It’s Wednesday, and we’re at it the Clinic again! Right now I’m on the transplant floor in the waiting room. I have my last appointment at 2, and then I’m free to go! Well, until they think of something else or I come in for inpatient testing on the 14/15th.
This morning, we met with a nutritionist, anesthesiologist (why are they all so HOT always?!) and worked some with the transplant coordinator. Then another transplant coordinator put on an information meeting for us where we covered everything from A-Z. Dad came up to meet us for that since I knew he’d learn a lot. He and Mom went to grab lunch while I’m sitting here waiting for my 2pm. I guess I could have gone with them, but I would have needed a wheelchair and then a semi truck to haul our total of 5 Vera Bradleys on it. Excessive much?
Nutritionist didn’t seem to mind my awful diet, but she wants me to up the protein so I don’t have too much muscle wasting post-op. Anesthesiologist asked pages of questions and concluded several times, “You’ll sail through this,” “Wow, you’ll get through this with flying colors!” So that was good.
Since my insomnia has multiplied a zillion fold in the past week, I’m hoping I can talk the transplant psychiatrist to give me something stronger but urban legend around here says she’s pretty picky on drugs and is actually specializes with drug rehab. Some psychs won’t give an anti-anxiety to anyone because they think patients need to learn breathing skills, imagery, personal ways to relieve stress, etc. because the alternative would be taking drugs that can build a tolerance, sometimes build addiction, etc. Then other psychs argue, “Why were these drugs made if no one is going to use them? That’s what they’re there for!” My psych at home is of the first kind and I’ve had it with a year or two of that. Now my nerves are 100x worse, I’m NOT sleeping, and I WANT drugs. I know I can find help if I can find the right doctor. Of course this doctor is just for psych clearance for the transplant, but if I don’t get a full night of sleep for another night, I might just go crazy.
I’m about done with all the pre-testing, and now we get to wait. The CCF transplant committee board will present my case tomorrow, they will release it to the Ohio state committee afterwards, and then they will send it to both of my insurance companies to verify payment. Then I find out where I am on the list and buckle my seat belt.
This is going to be a huge, bumpy ride.
Last week….
Monday – MRCP and ultrasound.
Tuesday – Doctor says things are bad.
Wednesday – Too many phone calls
Thursday – Pre-transplant testing and consults
Friday – More of the same
Monday was Memorial Day, and the break was much needed. After the long weekend, this morning, I met with the hem-onc specialist where he was supposed to prescribe a single dose of radioactive chemotherapy that will later be infused directly into my liver just in case the tumor isn’t benign. Remember, the tumor is in a position where we cannot know if it’s cancerous or benign, so that procedure will ensure if it is cancerous, that the tumor won’t grow. Once a certain size, a tumor can keep you from being on the transplant list.
However, he had a lot of different ideas than all of my surgeons and specialists and needs to do a lot of consulting before everyone decides what needs to be done. All of this will also need to be gauged along how high on the list I am when I’m officially listed on Friday. If I’m the top few people on the list, they won’t even worry about trying to shrink the tumor.
After that, we met with Lisa the social worker whom we met Friday, and she wheeled me around the hospital showing my mom and I the Transplant ICU as well as the step-down Transplant unit. The nurses look great, there’s a lot of support staff, and the ICU is brand, shiny new! It definitely helped to get an idea of where we will be staying for awhile, and the nurses looked really specialized and competent.
After that, the pre-transplant list rules sent me to the Women’s Clinic for some testing. I was heartbroken because my doctor’s secretary said she was now only teaching, not practicing, but my nurse practitioner told me she comes in for practice two days a week. That would have been good to know, oh, maybe a week ago? Or 3 months ago when I called? Anyways…
With each appointment or meeting or consult or test, this whole situation is starting to become so real, and I’m anxious just to come out on the other side.
I wanted to publicly thank my mom for driving us to and from the Clinic all of this and last week and for not leaving my side most of last week. I think she’s a little too worried about me, but that comes with being a mom. With a higher power to carry me when I am too weak to walk, I know I’m going to be just fine.
Last night before I went to bed, I asked my mom if she would sing to me when I was hurting and in the ICU. She used to do that when I was a tiny little girl, and I think the scariest part about all of this is not being on a pediatric unit, not being guaranteed my mom can stay with me for every moment of every day. No matter how much I’ve been through, I’m not ashamed to be vulnerable and cry for my mom or my stuffed “lovey,” or scream for higher pain meds. This is going to be hard, but I hope the result is worth it.
Thanks for all of the cards and prayers. The cards are touching my heart, and the prayers are definitely felt.
Seeing we just returned from Florida on Saturday, May 22, regular testing at the Clinic on Monday and meeting with my long-time pediatric hepatologist on Tuesday was a little stressful. Then, we found out the testing revealed my liver needs to come out now, and in a matter of a discussion lasting for under an hour, our lives were turned completely inside out. My doctor and I have a close relationship, and she fought back tears as my mom broke down. I knew then, that we were forced onto a journey that we didn’t ever believe would happen to “us,” a journey that we ultimately will never forget.
Wednesday was a matter of the transplant coordinators figuring out how to schedule the “cornerstone” appointments of anesthesia, social work, surgeon, and hepatologist around completing testing like EKGs, ABGs, a dozen of physician consults, and meeting everyone from social workers to psychiatrists to anesthesiologists. In no time, they had me scheduled to spend Thursday and Friday attending a long checklist of appointments and tests, with a much needed long weekend (Memorial Day), followed by intense Tuesday and Wednesday schedules. And then I’m done. Or so they say.
Monday’s tests were an abdomen ultrasound and a contrast MRCP (a form of MRI) The new venous collaterals and mysterious tumor sent up a million red flags, and on Tuesday, my doctor told me how important it was that we expedite the pre-transplant work up and get the liver out ASAP. As I’ve said, she was excited about the outcome and thinks my life will be something I’ve never known before. I’ll feel good, have energy, and be able to really live. Being sick since age 5, I just won’t have any idea what it’s like. I like the idea of it though!
In between telling our close friends and family, the next few days were just rough.
Thursday was by far the craziest day of pre-transplant prep – it was painful, it was long, and we had a ton amount of information thrown at us.
5:45am: Leave for Cleveland
7am: Laboratory – about 30 vials of blood pretty much drained my energy
7:40: Adult gastroenterologist consult
8:30 Financial specialist
9am: Radiology and surgeon consult
10am: Chest X-ray (which got pushed to late afternoon)
10:30am: EKG (which also got pushed to late afternoon)
11am: Pulmonary function testing
11:30am: Transplant coordinator
12:30pm: Computerized health questionnaire
1pm: Infectious disease
2:30pm: Arterial blood gas testing (PAIN)
Friday was a little better…
The day began at 7:30am when I got radioactive dye injected into my vein for later bone imaging.
8:30am: Lisa, social worker
10:30am: Bone scan to check for any movement of the tumor
HOME early!
I chilled like crazy all weekend, as fatigue is my biggest symptom and I don’t bounce back too well from long days.
Next week, I’ll be meeting with a hem-onc, a women’s health CNP, an anesthesia specialist, and there will be a large teaching session where we will be drilled in the As-Zs of a liver transplant.
I’m a little thankful I’m too tired to care much about this. Otherwise I think I might be a mess. Plus God is carrying us right now, I can feel it. Plus this isn’t quite reality yet.
Love to you all.
Amanda's Journey 