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.

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..."

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.

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.
  

Turbulence

Wednesday afternoon I get the call from the hospital that a bed is opening up for me. I'm relieved to get the show on the road.

While driving to the hospital, my nurse calls. I'm glad to be able to get more info from her. Only her "info" is confusing. She tells me the parvo virus is attacking my red blood cells before they get to my blood stream, and the IVIG infusion will attack the virus.  In the same conversation, she also tells me the IVIG treatment doesn't do anything to the virus, but it gives my immune system a chance to beat the virus itself. 

I ask her how long it will take and anything else I should know about. Linda tells me about 5 hours for the treatment and then I'll need another in 2 weeks. (Yesterday, she told me I'd need 3 infusions over the next 3 weeks.)  I ask if I'm contagious to others and she says no. And she asks if I have dogs because parvo is transmitted by exposure to dog poop. Yuck!

I arrive at the hospital and its the typical long wait for action. A couple hours after admission, I get an IV and blood drawn. Another hour later, the nurse arrives with pre-medication: Tylenol, Benadryl and solumedrol. Huh? Again, with the solumedrol, a steroid that I didn't expect and don't understand why I'm getting it. I've been told before its for treating rejection and no one's said anything about rejection thus far.

There's no available doctor to ask. I know I need the infusion. I take the steroid, too.

The IVIG infusion is uneventful. I spend most of it sleeping, knocked out from the Benadryl. (Ironic...I can hold my own against a variety of drugs, but I am powerless against a little allergy medication.)

End of treatment comes about 8 hours after I arrived, and I'm pretty tired. It's late and I want to go home. I'm concerned about being tired, so I stop at McDonalds for some caffeine via a hot chocolate.

I sleep soundly and in the morning, I'm hopeful for feeling a drastic improvement, but I got nothing. Ugh...I'm still weak.

I call Linda to follow up on my concerns. First she corrects some info from yesterday. Humans can't catch parvo from dogs or their poop. I caught it from someone else, probably a kid in class or my own kids, and no one probably knew they had it. They keep prescribing solumedrol because its also an anti-inflammatory to prevent reaction from whatever's being infused/transfused.

I'm concerned my hemoglobin is 6.8 and want to know how long until it goes up. She's hesitant to tell me, but finally comes out with how long it will take for treatment to improve the way I feel

"Typically, it takes a month, but you're young and healthy, so for you, it might start as early as two weeks." 

I almost drop the phone. My head is spinning and I'm re-angered about missing the positive parvo results two weeks ago. She tells me, once they saw the results, immediate action(the infusion) was necessary. I'm still stuck on if they'd taken action two weeks ago, I'd be improved by now. I would feel better already.

I need to get un-stuck. I understand I won't feel better real soon, and I'm scared, wondering how long I can physically survive these low RBC levels and I surprise myself with my question.

"How long can I maintain myself with a hemoglobin in the 6's and not need a transfusion?"

I can't believe I am actually suggesting a transfusion. I remind myself this evidences how poorly I feel and how long I've felt this way. I gulp, waiting for her answer.

Linda balks a little and tells me we have to be careful with transfusions because of the inherent risk of adding more antigens with each transfusion. I've already had four transfusions since transplant. Even with a blood type match, everyone has different antigens and these can be at odds with the grafts, increasing rejection risk.

Ugh. I feel powerless again. I have to wait...wait until I feel worse to "earn" a transfusion or wait TWO WEEKS until I feel better when the infusion works.

I'm past frustrated. :(
Just angry.

Limit Frustration, Expand Optimism

So Monday comes and goes, and I optimistically go for my blood draw. I'm actually feeling better than the previous days as I get it done.

By Tuesday, my flu symptoms have subsided some. I still have the nagging, croupy  cough that makes my back and stomach ache with each clearing cough. The cough is starting to be productive, and I think that's a sign it's in it's final stage.

At 4:30pm, I get the call from my nurse as I'm driving to pick up my daughter, Linda is hesitant to tell me her "unfortunate news" and details while I'm driving. 

Concerned, I pull over for the discussion.

She tells me I have a rare virus for transplant patients, parvo virus. It is typically inconsequential for healthy people, but can cause chronic anemia in people with compromised immune systems. She's glad they found it and glad to find the source of my issues over the last two months.

I ask her as many questions as I can think of on the fly. Linda admits to me she's never had a patient with this virus and she doesn't know much about it. Dr Piper told her it comes from exposure to dog feces and that I need to receive treatment within 24-48 hours.

"What exactly is treatment?" I ask nervously, as she sounds pretty grave.

"You need to come to the hospital for an infusion Wednesday or Thursday." 

She explains, with limited info and success, that it is similar to a transfusion, but no blood is infused, only medicine. Parvo virus decreases the longevity of red blood cells created by bone marrow. The infused medicine will allow my immune system to fight the parvo, and she refers to the medicine as IVIG, an immunosuppressant.

She promises to email me my lab result ASAP and email me some additional info on parvo and IVIG treatment. We make an "appointment" to be checked in to the hospital on Wednesday once a bed becomes available.

I don't receive anything from her on Tuesday. I do my own research, and find things that are contradictory to what she told me. I'm frustrated as I'd like reliable info to make an informed decision. I also look up my old lab work and find that I tested positive for parvo virus on Feb 25, and no action was taken then. I remember quickly looking it up in Feb and reading that it was no big deal for most people, end of concern for me.

Ugh. I am disappointed. With growing frustration, I realize that someone decided it was important enough to test for(it hadn't been on any previous lab work), but it seems that no one followed up on the test results. AND I saw it, but took no action based on quick research. And then, I continued to have symptoms(translation: feel badly and get sicker) over the past 2 weeks.

I send Linda a reminder email for the information, and a follow email on my concerns about quick action on my discrepant lab results and how I can facilitate this. I do all I can to make it as non-accusatory as possible, especially when I feel it is.

So, I've taken proactive steps so I can get answers. Now I need to figure out how to get my kids taken care of Wednesday evening, get their bags packed and pack my hospital bag, too. Getting the kids taken care of will take creativity; they will both need to be picked up, my son has a very restricted diet(which means I need to pack everything he'll possibly eat), and the number or potential people I've got to lean on is VERY limited.

So, I'm signing off tonight, resolved to be proactive in finding answers for my newest dilemmas: my kids' care and my own confusing health situation.

To this end, I'm choosing to limit my frustration and expand my optimism.
Wish me luck!