Duh!

I leave the hospital Sunday evening feeling relieved that it seems like we've addressed the potential risk of CMV head on and acted quickly to keep it from getting worse.

I am home and essentially relieved of major symptoms.  I haven't regained all my energy back and there's a complete void in the exercise category of my life.  I am optimistic for continued progress.

I decide on Tuesday to enjoy some sun and splash around in the pool with the kids.  Its late afternoon by the time we get there and we're only in the sun for an hour. My daughter notices first that I have a bunch of brown spots on my calves and bottom of my feet.  I am alarmed and try to wipe off what looks like mud…they don't wash off. They're freckles.

Freckles? Not a couple…we count at least 20 and there were none an hour ago. I'm alarmed and doing my best not to freak out about skin cancer possibilities.

As soon as I'm home, I look up skin cancer and transplant patients. A quick scan lets me know that the immunosuppressants I am taking will increase by skin cancer risk by eight times. Ouch! But that skin cancers, if caught early, are the easiest to treat and have a high rate of success. Yay! I consult my nurse, who tells me I'll need to take precautions, like always wear at lest 30SPF sunscreen, wear a wide brimmed hat, and get a dermatologist to regularly follow up.

I have never worn sunscreen in my life. My skin, although relatively fair, does not burn often and gets olive in the summer.  I spent most of my childhood and plenty of my adult life enjoying the sun. I look forward to being enveloped in the warm and bright sun, even the stinging tingle as the sun soaks up the moisture from the water, leaving your skin dry and desperate for the cool relief of jumping back in the pool. I love the feeling of security when you burst out of an air conditioned building, escaping into the sun's embrace. Being drawn to the sun feels instinctive to me, like a baby instinctively craving swaddling warmth.

I am aware of the illogical priority I'm placing on this.

I have dealt with restrictions of a much grander scale than this one. Diabetes means sugar must be all but removed from your food options. Insulin dependent diabetes means you must administer insulin shots every time you eat. Heart disease means detailed restructuring of your diet, exercise and lifestyle. Kidney disease means you are limited to 50 oz or less of any liquid each day. Hemodialysis means you must be in lockdown in a vinyl recliner at the dialysis center for 4 hours three days a week.  Peritoneal dialysis means you must be tethered to a machine every night and need to go through a multi-step medical procedure to walk outside a twenty foot radius.  Organ transplant means your survival is dependent upon your dependence on immunosuppressants and antibiotics. Parvo and CMV mean forever pursuing an elusive balance between drugs that can protect my organs and drugs that can destroy them.

But now we're talking about depriving me of a lifelong, simple, human pleasure.

I feel disappointed, cheated, bamboozled even.

I try to explain it to my daughter.  I struggle to find the right words to justify my visceral response. She is confused and quickly, but unintentionally, realigns my priorities with a simple question:

"But your organs are healthy, right?"

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.

Rejoice in the Roses

It's been a while since my last post, and mostly uneventful medically. I've been slowly building strength. I've had few medicine or regimen changes.  

Until last week. Lab results come back and my nurse provides me with the results. My white blood cell count is down again and my parvo titer is exactly the same as before my last two IVIG infusion treatments. :( 

Huh?

She directs me to decrease Cell Cept medication a little to give my white blood cells a chance to come back up, and lets me know I'll need to come in for two more IVIG infusions. Frustrated and bewildered, I head to the hospital on Wednesday to get the treatments.

As far as hospital visits go, it is pretty routine in regards to time. I get admitted at 9am, get an IV at noon, and actual treatment eventually starts by 3pm.They start my second infusion 12 hours later at 3am. Everything feels slow(as expected), but smooth.

My Vein Illuminator

(The coolest part of the visit is getting my IV inserted. It takes 7 attempts by three different techs. It sounds like I'm complaining, but the 3 women and the time they spend with me make the whole annoying visit worthwhile. Exhausted and inexperienced and kind and amusingly light-hearted, they are gracious for the opportunity to practice on my arms without me grumbling or complaining about the pain. As usual, my veins are less than compliant, but today I get to see something I've never see before...my elusive veins that I always

Practice for the Med Techs

hear about! After a few failed attempts, they bring out a vein illuminator, which detects red blood cells and makes the tiny veins visible on my skin!)

"Dr" Adam, the pharmacist who is leading my parvo care, stops by to update me as the infusion is finishing. He tells me the lack of decrease in my parvo titer is "personally insulting" to him. Just like me, he expects a significant drop in the parvo number. Color us both disappointed.

He goes on to tell me that there's a reasonable chance to therefore expect the parvo in my system to not be eliminated, potentially ever. (I swear I hear the "dun dun duuuunnn" of The Magnum Opus from scary movies as he pauses to let it sink in.) He believes my body's immune system is more compromised  by immunosuppressants than your average transplant patient.

Here lies the problem...they can't decrease the immunosuppressants any further(giving my immune system a fighting chance to defeat the parvo) because that puts me at a way-too-elevated level of risk for organ rejection, especially since I've had 3 bouts of rejection already. Without a boost to my immune system, parvo is likely here to stay.

My brain is trying to soak up this new information objectively. 

"So, what does that mean logistically?"

Adam tells me first, we'll have to wait a month to confirm results again, but assuming they're the same, there are 2 options:

1. Have a maintenance IVIG treatment routinely (maybe about every 6 weeks), indefinitely. The parvo will not be eliminated, but could remain controlled.
2. No maintenance doses, but just wait until I become anemic/sick and then treat with infusions and transfusions if necessary. Again, there will be no parvo elimination and will need to be treated indefinitely.

"Indefinitely means...?" I can't process it quickly enough.
Dun-dun-duuuunnn...
"Forever," Adam answers abruptly.

Yuck. 

Parvo...forever. 

Immunoglobulin treatments...forever. 

Limitations...forever.  

Freedom...never.
Adam and I feel defeated together.
 A frazzled med student rushes in, bringing his own private dust storm like PigPen from the Peanuts. Without looking up from his clipboard, he rustles papers and asks,  "How long since your last chemo infusion, Ms Win-" ...He's in the wrong room.

PigPen shuffles out quickly.
Adam raises a Groucho Marx eyebrow at me.
"Parvo's not so bad..."

Sweet Ache of Validation

Last month, I challenged myself to do "some sort of exercise" each and every day for the entire month. Mike Daughtrey,my first-ever pitching coach and  a recent lung transplantee, joined me in the challenge, inspiring me and boosting my motivation.

I am really proud of how I handled the self-imposed challenge. I was so determined to reach my goal and I first got frustrated when my body didn't cooperate with my plans.  I missed a few days, felt defeated. Ugh.. As I continued on, i received so much support, friends rooting for me, impressed by me and even inspired by me...this has been eye-opening and motivating and uplifting and inspiring. 

I had planned on sharing my experience with people who care about me and anyone else, specifically pre-transplantees, that was interested. i planned on offering insight to the process. I planned on using my blog to inform others and to be an outlet for me. I thought this was a pretty lofty goal on its own.

I  hadn't planned on being labelled an inspiration. And I certainly hadn't planned that inspiration to boomerang back to me exponentially.

I tried to view myself as others see me. I realized ultimately my success isn't measured by reaching a specific goal, but pushing myself to do MY best. I re-read all my physical accomplishments in the past month in the third person, highlighting what I had accomplished instead of what I hadn't. 

And I continued, pushing myself each day, taking breaks when needed, and getting creative when required.  

• On days when I didn't have time to officially exercise, i added 12 lbs of wrist and ankle weights as fashion accessories to ensure i got a workout. 
• On walk/runs with my kids, I ran circles around them(literally) when their pace was too slow to keep my heart rate up. 
• One day, I walked a mile outside as it was starting to rain, then completed the second mile speed walking around the inside perimeter of the house, up and down stairs from the top level to the basement.  

I did MY best, ending by successfully exercising on 26 days in April. (Insert virtual high-five here---yay, me!). 

And, since last month, my health, the ups-and-downs of post-transplant life and the threat of parvo virus have not been prominent in my daily thoughts. I'm so grateful to have graduated to real-life issues to concern myself with, not just the previously ever-present threat of medical fires to be put out.

I consciously understand I am feeling the sweet peace of validation. I'd been through 6 months of post-transplant life, and it always seemed like some new disaster was lurking around every corner, always ready to strike. Dehydration and rejection and blood clots and drug side effects and anemia and, ugh...parvo. It felt relentless, and I was desperate to feel better, to experience the post-transplant "good life." I wondered if I would ever get to the elusive "good life," or if it was just a dangling carrot to keep me from giving up. 

Guess what? I'm experiencing the medical "good life" right now. All my numbers have been excellent, I wake up eager, and grateful for this plateau.  I have put the recurring doubt of whether transplant was really a good idea to bed. 

This month, I've set up a new physical challenge with my coach. We're going to battle it out, supporting each other and pushing ourselves. I'm excited!

Today, I spend extra time doing my strengthening routine. I am exhausted (and proud to be) by the end of my workout. A few hours later, as I'm climbing the stairs, my calves and quads remind me how hard I worked this morning. 

I feel a gratifying smile spread across my cheeks, and I painstakingly relish in the sweet ache of validation.  

Yay for Efficiency!

This week has been busy and quick. Most important event has been my 4th and 5th IVIG treatments.

I check into hospital Tuesday afternoon at 2:30. I am totally prepared for the long wait before action is taken. As far as environments go, this is not the worst hotel room I've stayed in. I've got a private room, a comfy bed, lots of pillows and an impressive view of the the back of the hospital building.

Room service arrives around 5:30 with my pot roast and asparagus. I enjoy the deliciousness of a dinner I didn't have to cook, the peacefulness of not having to urge my six-year-old to eat the green food on his plate and the guilty feeling that I'm getting away with something by not tipping the food service crew or my medical tech who keeps my water jug ice cold and full.

Pre-hospital gown

Post-hospital gown

I catch a little cable before my mini-get- away is interrupted. It's time to get out of my street clothes and into a gown. The one-size-fits-all gown dwarfs me, my skin gets visibly paler and dark circles under my eyes become more prominent as I change...its like I'm doing a reverse Wonder Woman...Funny how there's nothing more effective at making me look sick than putting on a hospital gown. I unsuccesfully try to get the melancholy, frail-looking, hollow-eyed patient in the mirror to wink back at me.

After the change in attire and mood, it's all business. I get my Pre-medications and an IV in my arm. My immunoglobulin IV is running by 9pm. I'm totally over the frustration of being admitted 6 1/2 hours before any real action is taken.

The Pre-meds take effect, I'm groggy and I sleep soundly, but briefly. The incessant blood pressure cuff squeezes me into definitely-not-asleep mode just as soon as I doze off each time, which feels like every 2 minutes. I realize later that its actually set to retest every 15 minutes.

The nurse informs me by normally super low (90s/60s) blood pressure is high enough to require medication (180/120) and this means the every 15 minute jarring arm squeeze will continue.

Between infusions, I get a 2 hour cat-nap break from the relentless cuff, and my second treatment is set to finish by 9:45am. I eat, wash up, brush my teeth and get dressed while the infusion is finishing up. (Years of IV experience have provided me the uber-exclusive secrets of how to get this done while IV connected.) The agreeable nurse removes my IV promptly, hands me my Pre-written discharge papers(Yay for efficiency!), and I scoot out the hospital doors at by 10am.

All in all, this was a great hospital visit. I saw no doctors, received no bad news, wasn't delayed in leaving, and got a parvo-eliminating treatment to boot!

I start my day, checking off the regular boxes of things I need to get done. I feel slow and tired for most of the day, but by the end of it, removing my arm band and bandage is all that's necessary to make the fact that I spent the evening in the hospital completely transparent.

The Kidney Walk Looking Glass

Yay! On Sunday, we complete our first National Kidney Foundation's Kidney Walk. I proudly wear my "RECIPIENT" label. Impressed by their presence and above-and-beyond generosity, I am amazed at the high number of people tagged "HERO" and "DONOR." I'm especially awe-struck by the folks labelled "DONOR FAMILY," the term typically associated with the family of a deceased donor. 

Theres a local radio station(99.5) sponsoring the walk. After a few songs, the dj hands the mic over to a NKF rep, who starts with "Raise your hand if you have 2 kidneys..."  The bulk of the crowd's hands go up. 

"Raise your hand if you have 3 kidneys..." A splattering of us raise our hands, and the rep pauses and scopes the crowd, his eyes briefly settling on me and my outstretched arm. I feel the eyes of other humans(not numbers like 26 million Americans waiting on recipient list, but real, touchable, concrete I-could-reach-out-and- hug-them humans) in need, people who want to be in my place. Their stares burn a little with a bittersweet combination of envy, hope and inspiration.

The rep interrupts my self-consciousness with a booming "Now, raise your hand if you have 1 kidney!" And all of us possessing multiple kidneys applaud with genuine, whole-hearted appreciation. 

I expect the kidney walk to be positive and meaningful; I am not prepared for the overwhelming rush of heart-tugging emotion that is taking over my typically controlled demeanor.  I wipe away tears and look around wide-eyed at the huge crowd of once complete strangers that has morphed into a big, loud and engaging family bonding at a family reunion.

We stroll around the pavilion, checking out the kids' activities and people watching. I notice all the different team shirts and find myself pulling for each one. I want Little Logan's Dream Team to find a match for Logan, the cutest little red-head who clearly just started walking. He parts the crowd like Moses and the Red Sea, steadily advancing while pushing a folding chair as he toddles along. 

I sincerely hope that Mama Castro gets her transplant soon. Team Infinity looks like they're having a blast with tons of teenagers and their fun, tie-dye shirts. Spiderman & His Amazing Friends have a bunch of kids with them; I'm guessing whoever needs the help is surrounded with love from this motley crew. I wonder about all the other people waiting for kidneys, the ones who don't have a huge team to support them, the ones who are not a visible presence here at the walk. 

So... In very Alice-in-Wonderland fashion, I've been changed by my journey. I hope everyone will take this into account when reading my next few lines...

• If you donated to our team, THANK YOU for being so generous and willing to help anonymous strangers in need.

• If you read my blog, THANK YOU for sharing my experience and supporting me as I grow.

• If you're already part of my support system, THANK YOU for letting me lean on you, for encouraging me when things feel bleak and for being exactly who you are.

• If you'd like to do more, please consider donating your organs, eyes and tissue so that you can live on by helping one of my family members I haven't been lucky enough to meet yet.

Click the link to DONATE LIFE and register today!

http://donatelife.net/