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.

Gray News

 Today has been long.

My transfusion ends at 5 am and I am set to go home in the morning.

When the resident comes by at 6, he tells me they've ordered a blood draw to confirm I'm ok before leaving. But the hospital nurse doesn't have an order. My blood is not drawn until 8am. My hopes of making it to my students' belt testing today are waning. I'm looking forward to doctors' rounds, but these hopes are completely abandoned with their update; I will need to be here util tomorrow for imminent treatment..

Doctors' rounds are...interesting.

• First...blood test shows dramatic improvement in h&h levels. Whew! My hemoglobin is 9.0 and my hematocrit is 26. I am impressed. 

• Next...They've checked my parvo titer level(measures amount of parvo virus present) and they expect to see infected anemic patients with levels in the 1000's. My titer says its in the 1,000,000's. They will treat me with additional IVIG infusions. I was originally scheduled to have 2 total over 2 weeks. Now will have 4 total over the first 2 weeks, with potentially more to come as they will check the virus levels weekly. Basically, they will treat it until its gone, but everyone is noncommittal about how long it will take. Hmm...a gray area. I am not impressed.

"It's like this," Dr Piper explains. "if you start with a really BIG number, and the immunoglobulins cut the number in half, you're still at a really big number." Mine is the highest titer he's ever seen(too bad I'm not as competitive as I used to be).  

So I will repeat IVIG treatments, in hospital now and future treatments, until the parvo is irradiated.   

• Finally...Adam, the very helpful and informative transplant pharmacist returns after rounds because he knows I have more questions. He tells me I am the fourth person he's seen in 12 years with this type of parvo.  I am the first case for the transplant team in his three years at this hospital. The transplant doctors have been researching in the same way I have(online) for more info.  Uh-oh...add this to the gray news I am unimpressed with.  

I ask him about the gray area of when I'll feel better.  I have also read online that the efficacy of this treatment has not been proven. Adam patiently takes the time to explain what he knows. He tells me the immunoglobulins I'm being given are a medley of immune system boosters/antibodies from healthy donated blood. This non-specific medley is infused into my system and will boost the forces fighting the parvovirus.  He explains that it hasn't been verified by the FDA because severe incidents of human parvovirus are so rare. He firmly believes the IVIG will work, but admits that its not 100% guaranteed.

Although unimpressed by the unknown, I AM Impressed by his up-front-ness.I earnestly thank him and he goes about his day.

And I go about mine, sleeping and waiting for tests and treatment and looking up more details online.  I really don't come across anything especially helpful.  At least this validates the pharmacist's info about the rarity of my situation.

In the afternoon, I get the IVIG infusion, with the pre-treatment meds that knock me out for a while. I'm grateful for the physical and mental rest. My mind needs the break from the gray world it's floundering in.

I wake up long after dinner arrives, and I tally my impressed vs unimpressed list. Unimpressed is still ahead. 

I open my dinner tray and I grin at what I find...I ordered chicken Caesar salad, which they served, with a garden salad on the side...that does it, I am impressed by the irony and can't hold in my own laughter(I really wish I'd taken a pic...aargh!).

IMPRESSED has pulled even with UNIMPRESSED. 
That's a good outcome, and I decide to call it a night, ready for home in the morning.
  

Silver Linings

Since my last post, I've been laying pretty low. I sleep most of Saturday and plenty of Sunday. Saturday I am incredibly not well, and I begin to worry about needing a transfusion, well, not needing it, but realizing that my blood won't be drawn until Monday, therefore results won't be available until Tuesday at earliest. Feeling so poorly on Saturday, I wonder if I will make it to Monday without a trip to hospital.

But on Sunday, after sleeping in until 10am, I wake up feeling "not horrible." :)

It might sound sarcastic, but I've been adjusting to new normal, so "not horrible" is an improvement.

Monday comes and I'm feeling out how I feel...I decide I'm about the same as Sunday. Cool - two days in a row of "not horrible." I decide I'm going to win this battle. Take that, parvo virus!

I get lab work done, attend a conference for my daughter at school, and get everyone home quickly. We broil frozen burgers and dinner is on the table in 10 minutes. I even remember to make enough for leftovers tomorrow. Yay for early bedtime!

Tuesday is a little busier, but I still take advantage and break for a mid day nap. I am woken up with a call from my nurse.

Linda tells me all my labs came back and they are basically fine, EXCEPT they didn't get a CBC, the test that tells what my hemoglobin and hematocrit are, the test that says whether I'm improving or not in relation to my red blood cell count. Linda tells me they'll wait and just get this result on the following Monday's test.

Huh? I know I'm feeling a little better, but waiting two weeks when my last hemoglobin was 6 something doesn't make sense to me. I let her know I plan to retake the lab work, even if only for my piece of mind, on Wednesday morning. I feel like I'm making the right decision for my health.

Guess what? Linda calls me late Wednesday morning right after I sleep in and right before I leave for lab.

"Don't go," she says. "We got your CBC in."

"That's great." I'm glad she's saving me a stick.

"Ummmm, no." Linda hesitates. "Your hemoglobin is 5.5 and your hematocrit is 17.”

Ugh. This translates to: your red blood cell count is dangerously low, you should feel horribly, and we need to treat you right away. My presumption that I was kicking parvo's butt was waaaaay off.

"Dr Jonnson wants you to come in today for a transfusion." This is a bittersweet message. I know it will improve the way I feel, but it also means I'm sick enough to merit not only the transfusion, but the additional rejection risks of adding another person's blood to my body.

So i make the necessary arrangements, cancel today's plans, and ensure my kids are covered for the evening.i head off to the hospital, along the way concluding that feeling better is ultimately most important right now. I laugh at myself when I remember its Wednesday and I'm therefore looking forward to lemon pepper flounder and asparagus for dinner. Silver linings...

I won't go over all the painstaking details of how long everything takes in the hospital, but I am admitted by 3pm and my transfusion finally starts at 9:20pm. Six hours of feeling yucky and tired without a lot of action taken can really take the wind out of your sails.

The nurse has explained to me I will get 3 units(most I've received before is 2) because my numbers are so low. At 3-4 hours per unit, I should be done and peppy by late morning.

Determined to hold on to my silver linings perspective, i remind myself Thursday hospital breakfast is French toast, eggs and fruit. Yum! :)