Treating the Uncertainty Virus

IVIG Treatment: Long, restless, uneventful...mmm, hot chocolate!

I am admitted this week for IVIG treatment. As expected, there's waiting, multiple attempts to find a cooperative vein, and a ruthless blood pressure cuff. There's also lack of sleep and concrete answers.

One concrete thing that happens is a chest x-ray. Due to my cold turned sinus infection turned relentless cough, my doctor has ordered it to rule out pneumonia. Last month, cough/cold/sinus infection graduated to pneumonia.

Six hours into treatment, a couple  of hours after x-ray and five minutes into potential actual sleep, the nurse parades in, flipping on the lights and looking pleased.

"Good news! Your lungs are clear. No pneumonia."
"Great." I smile halfheartedly. I feel a strange disappointment at this news.

What!?! I spend  time thinking on this, trying to understand my reaction. I realize my disappointment is not at the lack of pneumonia, but the lack of diagnosis, strategy, plan. My experience tells me if I have pneumonia, it is black and white. Treatable. Under control. But without a diagnosis, there is uncertainty: not knowing why I'm sick, how long it will last or how to get better.

Since I have the time, I push myself deeper into my own head. It's not just the uncertainty of how to rid myself of a resistant and draining cough, it's that uncertainty is the overwhelming theme of my post-transplant life.

1. Here's 2 new functioning organs. We're uncertain if and when your body will reject them.
2. Here's your immuno-suppressant drugs. We're uncertain how your body will react to them and we're uncertain how necessary, what the right dosage is and how to test for efficacy with half of them.
3. You have parvo, a common virus that 60% of adults have and their immune system defeats it almost immediately. In your body, however, it brings on anemia, exhaustion, blood transfusions and hospital stays. We're uncertain if your body will ever defeat it, how the unapproved treatment we're giving you actually effects the virus, and how long it will take to be potentially effective.
4. You have repeated and resistant cold/cough/respiratory issues. We're uncertain if this is because your immune system is busy losing a battle to parvo, how to treat it, and if this will be a chronic issue.  

Uncertainty is a virus.
It takes over when my defenses are down. 
It's exhausting and scary and time-consuming.
And like anti-rejection meds, CMV and parvo, I've got it for life.

I'm still wrapping my head around this and how to deal with it.
Hmmm...
1. I can get stuck in the anxiety.
2. I can use it as motivation. 
I choose motivation. Motivation for acceptance, living in the moment and embracing the adventure of living. 

Maybe not as easy as it reads, but writing it down gives me a concrete reminder, my own personal prescription for how to treat the uncertainty virus each time it comes back.

And The War Rages On...

I am confident and nervous. I am grateful and skeptical. I am eager and scared.
The back and forth makes my head spin and my stomach queasy.

My parvo titer has been rising. For those of you who are not transplant-recipients-with-a-very-rare-immune-system-response-to-a-very-common-typically-asympotatic-virus, this means the level of the parvo virus in my system is increasing. A lot. And the loss of oxygen carrying red blood cells is coming.

"Healthy" is 0. I have never, since diagnosis, reached 0. My initial number, at diagnosis, was 1,030,000 and I felt especially sick. Like admitted-to-the-hospital-and-given-multiple-blood-transfusions sick. Like the-doctors-treating-me-had-never-seen-a-number-that-high sick. The lowest I have reached, in June, was 26,857. My last result is so high, the lab can't even quantify it, it simply reads a vague  >10,000,000.

Yes...greater than 10 million.  I refresh the lab results web page twice in disbelief. I count the zeroes a few times to be sure. It all feels simultaneously ridiculous and teetering-on-the-edge-of-hospital-admission serious.

In September, I was fighting a cough and cold and congestion, for weeks. This led to a sinus infection, pneumonia, and multiple rounds of steroids and antibiotics. Ultimately the right combination of meds and my less-than-efficient immune system won the battle.

As my doctor made clear to me at my last appointment, the war continues.

The next battle is upon me. Congestion, cough, sinus pain. Trying to nip this one in the bud, I head to urgent care, get diagnosed with a sinus infection and bronchitis. Ironically, I feel an eerie victory in this:
a) I don't have pneumonia. 
b) Those two things are completely treatable. 
I am physically ill, but it's not insurmountable. It's another battle I am set to win. I hope.

Honestly, I am weary of the relentless battles. I am struggling to retain the optimistic perspective I need. Dr Wali, in his "war goes on" speech, reminded me that this war is lifelong, it's a balancing act that I will be responsible for forever. There's no vacations, no time off for good behavior or even days that half-ass-effort will get me by. And the rules will keep changing, tolerances will adjust, resistances will build up, drugs will have side effects, and viruses will return.

Viruses, like parvo, the one that's snowballing in my body now. No one knows how long it will take for the virus' red-blood-cell-destroying power to start affecting my day-to-day life, or even if it already has. Is that why a run-of-the-mill cough turned into pneumonia a month ago? Is that why I'm struggling to fend off the runny nose my son had for two days two weeks ago that, for me, has turned into a sinus infection with bronchitis?

I'm going soon for in-hospital IVIG treatment, a kind of immunoglobulin cocktail that doesn't fight parvo virus directly, but is believed to generally boost your immune system so that it can stand up to the virus. Because this situation is so rare, it's technically not FDA approved, but has a track record(obviously a short one) of improving the patient's ability to fight the virus. None of this translates into that warm, fuzzy feeling that feels so elusive.

And it takes about a month to see the potential effects of IVIG treatment.
Long term strategic planning...a foundation for victory.

I do my best to explain things lightly and in lay terms to my daughter. She laughs at the overwhelmingly present theme of war.

Outwardly, I laugh with her. I hear myself, boasting like Bugs Bunny, assuring her that I am going to win this war.

Inwardly, I am confident AND nervous. I am grateful AND skeptical. I am eager AND scared.

Oct 4, 2013 - Happy Transplant-iversary!

Whew! It's been a year, 365 days, a full trip around the sun since my kidney-pancreas transplant and what a difference a year makes. The physical improvements are obvious, even to me. The emotional changes more subtle, but way more important.

Not to mislead anyone, I have a lot more work to do. And a lot more fears to overcome, challenges to conquer, doubts to silence, experiences to experience, and life to live.

Life to live...That's the big one. Accepting that my life is mine to live, and to live indefinitely. I never wondered before what retirement would be like. I didn't concern myself with how I would afford medication in my 70's and 80's. I couldn't picture seeing my daughter graduate from college or my son learn to drive. I didn't wonder what it would be like to be old and frail. i decided a long time ago I wouldn't be around that long. With certainty. Undoubtedly. Not a question. 

 

I was being realistic, and this was my reality. 

Was.

Oct 4, 2012 started my new reality. A new reality with new fears, new risks, unpredictable challenges and who knows what else? A new reality where the future is uncertain, uncertain in the best way possible.

It's my first trip around the sun in this new reality. I'm still adjusting. I still have "AHA!" moments. It's going to take some time. But, lucky for me, it looks like I've got as much of it as anybody else.

I am so grateful to the people who have supported me through my physical weaknesses, emotional shortcomings and perspective adjusting. I am grateful to the people who saw past my weaknesses and pushed me to discover my strength. I am grateful to the people who focused on my determination and not my raging steroid-induced emotions. I am grateful to the people who helped when I asked, and especially to those who stepped up when I was too stubborn to ask. I am grateful to the people whose support and presence in my life shows me I will always be more of an asset than a burden.

I am grateful to my readers and virtual supporters. Thank you for following and giving your time to share my journey. Thank you for the support, encouragement and inspiration I feel every time you comment and share. You'd be surprised how meaningful a comment can be, from a stranger, a relative, someone you thought wouldn't even remember you, a close friend, a new "transplant buddy."

I am grateful to my unknown donor and the family he left behind. I know today while I am reflecting fondly on the past year, they are likely mourning their loss. I want them to know I will never forget, under-appreciate or waste this gift.

I am grateful and eternally indebted to my dad and my children for the things they've done without even realizing. They strapped themselves in for the entire ride, struggled along with me, shared in my fear and my excitement, provided strength when I felt weak and never let me forget how important I am to them. 

 
So, Happy Transplant-iversary to me. As I blow out the candles on my virtual Transplant-iversary cake, I'm wishing for more of what you've already given me....your support, comments, smiles, encouragement, inspiration, presence. I'm honored that you've chosen me to give it to.

Millie's Sweet Song.

This week I attend a volunteer training for WRTC(Washington Regional Transplant Community), my  region's organ procurement organization. They are training people to spread the word about organ donation. My nurse referred me to take part as a member of this team. I am eager to go, share my story, and pay forward some of what I've received.

I'm not exactly sure what I expect, but what I get is another memorable experience. Arriving, I am greeted with smiling faces and offered a pleasant buffet meal. I choose to sit at a table with two smiling, healthy-looking women who had been there since before I arrived. The woman to my right welcomes me warmly and I find myself talking comfortably with them and wearing their contagious smiles.

Why not be happy? The woman across from me received a kidney a few years ago and is doing great. Hanitra, right next to me, donated a kidney to her mom a few years ago. She says her mom recovered from kidney transplant surgery faster than she herself recovered from kidney donation surgery.

Now it's  my turn to be eager. I had never really considered the experience of the living donor. I have thought plenty on the lives of the donor family, but never a living donor. She shares with me the difficulties she faced, and all the while, steadfast in her statement that she would do it again if she could.

We finish dinner quickly and move into another room for the presentation. Inside, I find myself between Hanitra and a gentle-faced gray-haired woman. She has a soft smile on her lips, she is poised and gracious, and her eyes have a beautiful sadness I am drawn to.

Millie's name tag reads that she is a Donor Spouse. My heart sinks reading this; I could feel her grief and strength and positivity all at the same time. She smiles as she speaks about her deceased husband of 45 years. She explains getting the call from organ procurement and hearing that her husband's organs, eyes and tissue could be used to live on in and improve the lives of 40 people.

Millie quickly stops talking and regains the small amount of composure that had started to slip. She smirks and lets out that she feels like she's so moved she's on the verge of tears the whole evening. We both straighten up...the presentation is about to start.

Now its my turn to struggle to retain my composure. I feel my eyes well up, and I'm blinking to keep them from overflowing. I am overwhelmed with gratitude and empathy for Millie, the Donor Spouse.

I wrote a letter to my donor's family last December, and I haven't heard back yet. But Millie is right here, next to me. Breathing the same air as me. Volunteering right along side me. Grieving over losing her best friend a year and a half ago. Taking in the shared information with interest. Still giving after having already given so much.

I can't hold in my tears. My shoulders shake a little for a minute, but I am rescued by the start of the presentation. I wipe my face, munch on my cookie and try to pay attention; WRTC has a great team and they designed an impressive and informative night. Millie's strength remains on my mind throughout.

People tell me a lot that I am strong, and I obviously try to be...

But I am humbled by the superpowers of the gentle and vulnerable Millie the Donor Spouse at the table with me. Her brave, sad eyes smile back at me as we say goodnight, and we hope we'll be assigned together at a future event. I play our brief embrace, including the soft, sweet music in the background, over and over in my head.

I may never get the chance to see my donor's family or even Millie again...I wish my donor's family the strength and peace that Millie exudes. I know that dealing with my turbulent medical past has been tough on my own family...I wish Millie's strength and peace for them as well. Humming my new theme song, I even wish it for me.

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.

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/

Paying It Forward: My New Normal

I am adjusting to my "new normal," a term borrowed from an old friend. It's April 18, and I have publicly committed to doing "some sort of exercise" every day for the month of April. Thus far, I've succeeded on 16 out of the 18 days...Yay, me!

My new normal means I am not overwhelmed with concerns about parvo, rejection, anemia or the weekly reveal of my lab work. Last month, I would get frustrated at the long delay between blood draw and results. This month, I don't even remember to get frustrated at the wait.

Today, I get last week's results back. All the standard stuff is within range, and...(drum roll please)...my parvo level has dropped from 1,000,000 to 103,000.  That's a lot of steps closer to zero than I expected. Yay, me! Again!

Now that I am overwhelmed with good news, I consciously decide I need to "pay it forward." I search online and find that the National Kidney Foundation's Northern Virginia  Kidney Walk is next week. What a great cause to get involved in!

I sign up both kids and me for the charity walk. We are Team: Pay It Forward. I'd love all the help we can get with our efforts. Here's the link so you can help someone sick get the opportunity for improved health, better quality of life, and a successful outcome like mine:
http://donate.kidney.org/site/TR?team_id=148671&pg=team&fr_id=5552&et=lo-IQd1_1u5AKSSVfG7wzA&s_tafId=75152
 

I am consciously grateful for the gifts and support I've received.

I am consciously impressed with my recent health improvements.

I am consciously aware of my good fortune.

My "new normal" means I will be consciously paying it forward at every opportunity.

Stormy Path, Sunny Days

I have been out of the hospital for two weeks! After I got my transfusion and infusion combinations, I slowly began feeling physically better than I've felt since Christmas. 

A few days into being home, my nurse gave me the go ahead to "do whatever you want." She told me my body will let me know, and my blood work will show decreasing numbers if the parvo virus gains momentum against my currently effective immune system.

So I'm doing as close to "whatever I want" as real life will allow. During spring break, I take the kids hiking, we go to an indoor water park, my daughter gets to experience a college cafe, and we trek through an arboretum.  

By the end of spring break, we're all exhausted. I have to check my common sense meter as my tiredness initially concerns me, but both kids look way more spent than I feel. Yay! I'm simply tired because...well, it's spring break, we're running around, and I earned my exhaustion. 

Again, I receive inconsistent "info" from my medical team. I left the hospital understanding my next infusion would be this week, now I'm told we will wait and not even test my parvo level until next week. Immediately I want to argue; my self-preservation instinct is strong...but I bite my tongue, reminding myself that I'm feeling not only fine, but good.

When I go to clinic, I am not seen by MY doctor. Another surgeon, Dr Jonnson, sees me, tells me I'm doing great, we'll check on the parvo virus in four weeks(not now) and tells me I'm cleared to return to my nephrologist for continued care(ie transition out of transplant team care).

Wow! 
Is this good news or not? I can't figure it out and I'm flooded with mixed emotions. 

• I feel good...Yay!
• I have parvo and don't have confidence that my nephrologist will be any more prepared or experienced that my transplant team...Ugh.
• Today is my transplant 6 month anniversary and my organs are performing swimmingly...Yay!
• Given my history and the long leash the doctor is proposing, I am apprehensive again...Ugh.

I bounce back and forth in my head, trying to spin everything to half-full when Dr Jonnson leaves. I confirm with my nurse that I can continue doing weekly labs to check status. Yes.  She assures me that if my nephrologist isn't familiar with parvo, the transplant team will follow me until its eradicated. Linda doesn't seems especially confident with the decision either. She tells me she'll share everything with my regular doctor.

I realize I'll need to let go of this safety net eventually. My labs will be telling the story of how I'm feeling. I will continue to check them weekly.

Later that afternoon, Linda calls to say today's lab work is in and a minor med adjustment is required. And...because of the change, I'll need to be seen by Dr Wali, MY doctor, in two weeks to follow up.

I'm embarrassed, but completely aware, of the reassurance this provides me. I don't yet trust my body. There have been speed bumps on my road. I'd like some bump-free time behind me to feel more confident about moving on.

I decide I'm going to use the coming two weeks to get myself prepared for transition. 

I start my pep talk...

The rest of my life awaits. 

I can not be babysat by my transplant team forever. 

I've read that the average kidney transplant lasts 10 years and pancreas 12 years, and I'm only 6 months in. 
I've got plenty of outside-the-hospital living to do.

...Now, I just have to believe myself and make it happen. 

Catching the Happiness Bug

Friday morning at 3am I'm scheduled for my final immunoglobulin treatment(for this round). By 2:45, when I've seen nothing, I page the nurse, who comes in at 3am with the treatment, but none of the typical pre-treatment meds. I point this out and after a few back and forth calls to the resident on call, pre-meds are dosed and the IVIG starts by 4am(I'm forever wondering how patients who aren't completely aware get themselves taken care of...)

I go over with Andrew, the resident, my plans for the day to be sure my expectations are realistic. He confirms to me that with a hemoglobin of 9.4 and hematocrit of 28, I can return to my completely normal active schedule. This makes me feel even better!

I let him know if that's the case, I need to be discharged and out the door by 10am. I have 3 schools with belt testings scheduled for the afternoon. He assures me they'll make it happen. Andrew is really starting to grow on me.

Its 8:30. The morning inches by. My IVIG ends, I eat breakfast. I remind the nurse I need to leave on time. I wash up, brush my teeth and hair, good riddance to the hospital gown.

By 9am, I am packed and ready to go...but no discharge papers yet. I convince the nurse to remove both my IV ports. I remind the charge nurse of my schedule, who tells me the doctors are rounding right now.

At 9:15, Dr Jonnson, Andrew, and Amy, the transplant nurse practitioner, arrive for rounds. They go over my treatment plan and follow up instructions. It's quick and light-hearted. I am glad. A couple of med changes, routine checking on my parvo stats, and probably more transfusions and infusions until the virus is completely gone. Everyone agrees I can go, and Amy says it'll take a few minutes for the discharge papers and I'll be good to go.


It's 9:45. I'm getting especially ansy. Where is the agreeable Andrew when I need him? The charge nurse pays me a visit, being sure I know that if I leave AMA, against medical advice, my insurance could easily deny payment for the hospital stay. I don't argue that I'm not leaving against medical advice, simply without agreed-upon discharge papers.

My stress level is rising. My time is running short. I can't be late for belt testing today, and I can't leave without signed discharge papers. Being late for belt testing is like the dance teacher being late for a recital, but leaving AMA is financial suicide.

At 9:59, my nurse runs in, waving the discharge papers. "We got 'em!"
I think she's as excited as I am. I scurry out of the hospital, thanking everyone as I go, and I'm in the car by 10:10.

Despite the stressful morning, my drive back is, as always, long, and this time, I spend it reconciling my treatment plan and parvovirus as I understand it.

• I have parvovirus, and it kills of red blood cells before they mature enough to benefit my body. The virus, in the form I've got, is extremely rare, without a lot of previous cases AND I've got the worst case my doctors have seen.
• Treatment for the virus will be recurring IVIG infusions, planned to decrease the infection each time, only no one knows how much each time. The frequency and total number of treatments is also unknown, simply that we'll do them until the virus is gone.
• Treatment for the likely dips in red blood cell counts will be transfusions. Right now, I feel good; I'm freshly juiced up on a blood transfusion...Yay! No one knows how long the benefits of the transfusion will last, and its likely I'll need to be juiced up again when they wear off.

Although initially frustrated at the lack of shared information, concerned about the doctors' limited exposure to parvo and just plain scared of the unknown, I realize now this plan is completely do-able. I breathe in my resolve and exhale out my fear and frustration.

I'll need to continue weekly lab work...no big deal, I already do labs weekly. I am, however, going to change my draw day to Fridays. That way, results will be in by Monday and action, if necessary, can be taken early in the week without upsetting my heavier loaded end of the week.

Transfusions and infusions are becoming old hat. And, even though I don't know how temporary, this treatment IS temporary.

The rest of my day is stressful and rewarding. All three belt testings are extremely successful. As it should be, students and their families are completely unaware of events in my life leading up to this afternoon.

The kids do great and their parents are proud. Our cheeriness is infectious and we're all genuinely happy for post-testing photos. I'm so grateful that my stressful day ends with a room full of beaming kids and impressed parents.

Everyone leaves in a good mood...especially me.