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..."