Adjusting My Sails

Last week while I was busy concerning myself with the lack of medical news in my life, my inner voice was telling me to knock it off and just appreciate the calm.

I should have listened.

Thursday night my period starts. Ho-hum.

Really early Friday morning, like 2 am, I realize ridiculous and alarming amounts of blood are leaving my body. And it won't stop. I wait a couple hours, believing it will subside, but it only gets worse. I debate over how crucial this is, but ultimately decide it warrants a call to the on-call transplant coordinator.

She calls back quickly, and I explain the situation. She speaks calmly, but definitively.

"You need to go to the Emergency Room now. Do you have someone to drive you? If not, call an ambulance. You can not drive there."

 "Why not?"

"You're going to the ER to be sure you're not bleeding to death. You can't drive yourself."

Bleed to death? Whatever…but her words still haunt me getting into the car. I'm trying to maintain her calm and definitive nature as we rush to the hospital. I am starting to feel really tired and a little dizzy. I keep nodding off on the ride there.

Bright lights in the ER lobby wake me up quickly. I am assigned a bed almost immediately, no triage. A nurse asks basic history questions and I am cranky and impatient. I'm losing faith in the nurse, feeling like she's not really present when she asks me why I'm taking immunosuppressant drugs after I've told her I had a kidney/pancreas transplant 10 months ago.

A calm, accommodating doctor lets me know she's going to be drawing blood and running tests. I am adamant that they page my transplant team, as the coordinator instructed me to do. Despite her reassurance that she'll contact them once test results come back and she's done an exam, I don't feel comfortable with the soft-spoken ER doctor I don't know.  

She asks me if I'm light-headed, and I admit I am but I'm not sure if its psychosomatic, the fact that its 5am and I've been awake for 24 hours, or the loss of blood. We discuss medications some more and she suspects an interaction of ciproflaxin and coumadin are the cause of the excessive bleeding.

My faith in her is growing.

She completes the exam and test results come back quickly. I am healthy on paper, good H&H, white blood cell count and red blood cell count despite the blood loss. Nothing is out of line. They've ruled out any other reasons for the excessive blood loss. She has discussed the issue with Dr Piper and they've concluded I should stop taking both the cipro and the coumadin until Monday at least.

I really trust her by the time she says I get to go home.

Riding home, exhausted physically from no sleep and emotionally from the mini roller coaster ride the evening provided, I laugh at myself, thinking how silly my over-reaction was, and I imagine telling my daughter about today's late night/early morning adventure. 

My daughter in mind, I immediately realize there was no over-reacting. If this had happened to her, I wouldn't have waited a couple hours "just to see." I wouldn't have called for advice. I wouldn't have "whatever-ed" the possibility of bleeding to death. I would have rushed her in to be safe.

Gulp. I understand transplant is not only re-shaping my body, but my mind as well. Like all moms, it has always been instinctive for me to take care of my kids and back-burner my own health. Transplantees, even moms, don't have that option. I'm still new at this, and it's not as easy as it sounds.

                                         

I am adjusting my priorities. 

I am not de-prioritizing my kids. 

I am just re-prioritizing me.

Unsettling Calm

I havent posted anything for a while…a combination of being busy, internet issues, not feeling great(but not feeling sick), and not having any news…

Although not exciting, here's the updates I do have:

1. I have a hacking cough.  It's been here a while, and its painstakingly slow at diminishing. But I've had everything checked, a CT scan, tons of blood work, routine and exceptional…and, guess what? I have a hacking cough that is slow to go away. I'm taking some steroids and antibiotics, and I am trying to be patient.  A nagging cough is not detremental to healthy people, and that's who I'm choosing to be.

2. On the especially healthy note, my Parvo virus number and CMV number are drastically lower, and both are almost in normal healthy range, which Dr Wali calls negative results(we have a difference of opinion on this) :)

3. I'm still not taking any Cellcept(one of the 2 immunosuppresant drugs transplant patients always take) to give my immune system a fighting chance to defeat parvo and CMV.  There was lots of concern about opening up the door for rejection, but none of it has been founded. Yay for me and my immune system!

Literally, this is all I've got. I have to pause saying this as it brings up a brief and crazy and ironic and twisted sense of disappointment at not having more exciting and pressing news to share, like I'm letting people down by not having another medical challenge to rise above right now.

My 10 month transplantiversary was August 4. My complications and I had a good 10 month run of playing tit-for-tat.  It was close sometimes, we were neck and neck, and I spent plenty of nail-biting nights wondering about outcomes, but I was ultimately victorious.

So, I'm taking a deep breath, reflecting on my journey, grateful for my success and growth. I appreciate the lull, the valley, this precarious, tenacious, fickle unsettling calm.

Exhaling, I know my boat will be rocked sometime in the future, but I wont let it tip;
I will continue to choose victory.