Stubborn Purple Resolve

We are set to leave California to go home from vacation on Thursday. The week has been up and down, spending time with my dad, lots of people to see, fun to be had, and as much rest as possible in between it all. A few days of continued digestive issues and signs of a budding infection haunt me as we enjoy the end of the trip.

I receive an email from my coordinator as we're prepping to head to the airport. Nikki tells me Dr Wali wants me to be admitted the following day to treat the CMV that has been causing the troublesome symptoms. I am unprepared for this, and I need to scramble to get my kids' covered, free my responsibilities for the weekend and get to the hospital within hours of arriving back on the east coast.

It hasn't been easy, I receive help from others, and I'm sure I've let a few people down, but I make it to the hospital by 10:15 as had been agreed upon with my nurse. Unfortunately, I get informed that no beds are available. Frustrated and jet-lagged, I sleep on a hospital couch waiting indefinitely. A call at 1:30 jolts me awake, a woman asking where I am because my bed is ready. I get admitted quickly, but end up waiting until 6pm for doctors orders and medicine to materialize.

The techs and nurses are accommodating and offer me a pitcher of ice water and the standard hospital gown. I gratefully accept the water and politely refuse the gown, stubbornly keeping on the purple polo shirt I arrived in.  I'm determined to not be sick, so I'm not even going to take the risk of appearing sick.

I'm set up on IV Cytovene. I've never used this drug before and I'm too tired to look it up when it starts. I sleep through the night and into the late morning when the doctors are rounding. Dr Wali tells me CMV is "a nasty virus," and that it needs to be contained. My recent CMV titer is 50,000 and needs to be less than 200 to be considered contained.


He has ordered that I stop taking Cellcept, one of the immunosuppressants I've been required to take since transplant(It is supposed to be a lifelong necessary medication). This is alarming to me and I ask about the increased risk of rejection without half my immunosuppressant meds. Dr Wali says that it's an inherent risk we have to take to defeat CMV.

They're also taking some samples and tests that will need to culture to confirm CMV as the cause of my recent digestive issues.  He says we'll have more information in 24-48 hours.

I am appreciative of the proactive response and treatment, but also realize the seriousness that must be implied by acting so quickly and decisively. Discontinuing Cellcept? Definitely a risky, but apparently necessary, step to take.

My purple polo shirt and I refuse to be sick. We'll stop the immunosuppressant and play the precarious guess-and-check game of balancing the risk of rejection against the existence of infection. I know my immune system needs a boost to fight off these opportunistic infections, but I've grown especially attached to my functioning kidney and pancreas, and I don't want to tempt rejection. 

And that's exactly what we're doing. 
And the balancing act is getting tougher. 
And the stakes are getting higher.

After the team leaves, I realize I've forgotten to ask about the CMV medicine, Cytovene, i look it up and find that it is typically given by IV for a couple weeks...Yuck! My nurse Nikki had told me I'd probably be in the hospital for a couple days. I'm hoping that answer will come with my test results, so the question will be only temporary.


I reassure myself that this whole situation is temporary, and this is not MY real life. The particulars of this temporary situation are means to an end:

• I temporarily need infusion treatments to fight off the "nasty" CMV.
• i temporarily need an IV in my arm to keep  hydrated.
• I've temporarily got bandages from blood draws.
• I'm temporarily confined to the hospital bed.
• If Cytovene IV treatment takes a couple weeks, it will also be temporary means to an end.

The tech comes in to see how I'm feeling and to again offer me the hospital gown.

I look in the mirror and acknowledge that I am feeling....ok.
"No, thank you." I smile appreciatively.

My purple polo shirt and I refuse to be sick.

Spinning

The past couple weeks have been challenging. Real life, non-medical stuff, has been stressful, and I have been feeling an underlying "something's not right" feeling that I've tried to ignore, but haven't been able to shake.

I get routine lab work drawn last week, and they come back with a white blood cell count of 1.8, which roughly translates to "you're a magnet for infections and now have no ability to fight them...Get a neupogen shot NOW." 


Neupogen is a shot I've been given a few times for low WBC count. It stimulates bone marrow to quickly produce more white blood cells to raise dangerously low counts up very quickly. For me, this causes intense bone pain for about 2 days following the injection, the kind of pain that Percocet, switching positions, laying down, massage or heat/cold can't do anything to subside. 

I embrace the shot, despite the pending pain, understanding its necessity. I receive the shot on Wednesday, less than 24 hours before boarding a plane for a six hour flight with my kids to visit my father. 

Ugh. Relatively intolerable pain, inability to take recommended pain meds, cramped space on a plane, and an anxious six-year-old with a monitor that doesn't work. It is a very trying day, and I am so grateful when the bone pain diminishes earlier than I expect on Friday morning instead of Friday afternoon.

Feeling a little elated, I check my email and discover an email from my nurse...cold sweat on a sunny California vacation day...she lets me know that my recent labs reveal that I have been diagnosed with another lifelong virus...CMV.

CMV? Huh? I look it up. 50-80% of adults have it, almost all are asymptomatic, most people don't know they've got it, blah, blah, blah....but can be dangerous to people with compromised immune systems. One site refers to CMV as the single most important infection for transplant patients. Another touts:

CMV is an immunomodulatory virus, and its effects on the host include enhanced susceptibility to opportunistic infections and, probably, chronic allograft dysfunction. Another indirect effect is acute and/or chronic allograft injury and dysfunction

I am disappointed, to say the least. More accurately, I am scared and anxious and overwhelmed and angry about the future, the unknown. I feel my paranoia about medical outcomes becoming a way of life, not a temporary detour on my road to liberation.

I can't find much on treatment. I check support groups and understand that transplant patients with CMV feel

• Fatigued...check
• Gastrointestinal issues...check
• Muscle Aches...check
• Fever/night sweats...check

This is all the stuff I've been pushing through. None of it stops me in my tracks, it has been draining on me for a couple weeks. I haven't exercised, I haven't eaten consistently, I haven't felt badly enough to give in, but haven't felt good enough to do anything more than I've had to.

I'll have to wait to talk to my nurse and my doctor. Without their input, I'm spinning my wheels trying to solve a mystery without any clues, like I'm Velma stuck in a Scooby Doo episode that never gets past the first commercial, before Daphne trips over the obvious clue and before Scooby sniffs out the Scooby Snacks. I really want to fast forward to the end where Fred and his ascot reveal everything.

There's no place like...the hospital

I have been home since last Sunday. And the week has been rewardingly uneventful. :)

By Friday, though, I hit a speed bump. My urine is brown, not a little dark like amber-colored, but brown like soda syrup. I am alarmed and it continues throughout the day. I investigate on Google and it could be dehydration, blood or further kidney issues. Uh-oh.

I call the on-call transplant coordinator, who tells me not to get too concerned, it's probably a little dehydration and to boost my water intake. I can do this, but I do have a nagging feeling I'm not dehydrated; I don't have any other concurrent symptoms.

Saturday and still brown urine, and the coordinator doesn't think I should worry as I am due to go for lab work on Tuesday. That is 3 days from now, and based on my post-transplant experience, A LOT can happen in 3 days. I push a little harder, explaining my concern and the on-call surgeon sends me to a local ER "just to get blood drawn." Gratefully, I head off to give the blood and get everything cleared up. I'm figuring it will be like stopping at an outpatient lab. 

Five hours, a blood draw and lots of discussion later, the surgeon remotely orders me to be admitted to the hospital where I had the transplant. It's an hour from the current hospital I'm at.  I am further on edge as the local ER doctor doesn't really have any answers, just that some of my blood counts are elevated and that the surgeon wants me admitted. I don't argue, but leave unsettled as I'd like more information about the situation and risks. What exactly is the reason or course of action for my admission?

By midnight, I am checked in, but still no answers. At 2am, an anxious med student comes in, asks lots of intake questions and looks at my abdomen.  He is in data-collection mode and has no answers either. By 3:10, a yawning resident stops by, asks more questions and lets me know they will be starting a round of IV antibiotics. 

Yay! Some details and action. She tells me about some elevated kidney and pancreas levels and especially a more concerning high white blood cell count(your WBC count goes up typically when fighting something). They can't determine the cause of infection yet but they've drawn more blood to help determine the source. 

At 6am, my old friend/resident George stops by and tells me they've concluded it's an infection and I'm being treated with antibiotics and "Its not too big of a deal." At this point, lying in a hospital bed, feeling less-than-informed, I am not convinced. I do, however, believe that antibiotics seem like a safe course of action.

Eventually, I sleep, a restless, frustrated, want-some-answers sleep. At 10am, Dr Jonsson, the transplant surgeon appears. He talks kind of like the Wizard of Oz, and I really have to press for more details. He tells me he does NOT think its an infection, that the lab work is once again ambiguous. He will send my samples to be cultured to eliminate infection as a cause; this will take 2 days to complete. 

Initially pleased to hear no infection, I quickly remember I still have elevated blood tests and brown urine. And I have developed a nagging pain, not medication worthy, but still there, in my abdomen. Why? Dr Jonsson drops the bomb I am not expecting.

He thinks it is more extensive rejection. He is starting me on Solu-Medrol, an immunosuppressant steroid I was taking during my last go-round at the hospital. He will start Thymoglobulin, a more potent steroid by tomorrow.  He believes I should have had this during my last visit to completely eliminate all signs of rejection. 

I am muddled, thrown off balance. "How is the brown urine related?" is all I can come up with.

Tests confirm there's blood in my urine changing the color. Dr Jonsson believes its probably from my kidney biopsy last visit and the blood thinners knocked the blood loose. He stops blood thinning treatment for the time being.

He stops talking again. We are all silent as I take it all in. I wanted better news, and I am shocked and frustrated at the lack of an answer. 

"So, I will at least be here two days?"

Dr Jonsson looks down and shakes his head. "Probably longer than that," my Wizard of Oz answers vaguely. "These are valuable gifts you've been given and we need to take care of them."

It takes me a while. I am caught off guard and scared and frustrated and tired of always waiting for answers. Doctors are detectives, trying to come up with and prove their theories, not omniscient all-knowing gods. I can not deny my frustration, but I'm not mad at them. I breathe deeply, look around my room and remind myself another stint in the hospital will be a distant memory once I'm living the life I am preparing for.

And Dr Jonnson is right. I realize I am not in a rush to leave, and I need solid answers and definitive action to be taken, which can only happen here in the hospital. There will be no clicking sparkly red shoes or chanting "There's no place like home" for me.

I let the doctors leave and I reflect on what he's told me. The situation is frustrating and the treatments are contradictory. Taking a potent immunosuppressant furthers my risk of infection, which may or may not be the reason I am here in the first place. How will this risk be balanced? How long will the Thymoglobulin stay in my system? When I go home, will it be risky to be exposed to my five-year-old bundle-of-germs?  How long does "longer than that" imply? What about the pre-existing blood clot and the effect of taking away blood thinners? Are these complications typical? 

I take notes on my questions to ask George when he returns.
I breathe some more.
And I...WAIT.