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?"