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! :)

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! 

Ups and Downs

So, another week in the books and mine has been up and down.

Ups?

1. Monday's lab results showed  my kidney and pancreas are pretty much functioning optimally:

• GFR of 80
• Amylase 27
• Lypase 81

2. On Wednesday, we had a snow day, which means sleeping in!

3. We(kids and I) totally survived our Weds snow day "adventure!" My son had an ophthalmology appointment that we couldn't afford to miss that was 2 hours away in Maryland.  The three of us packed up supplies for an evening away in case the snow didn't let us return.  The snow was rough to start, but turned to simply gray rain for the last half of our trip. Kind of a let-down for my daughter, who was excited about watching DVD's, eating out and spending a night away, but I was glad to make it home safely from our "adventure."

Downs?

1. My most recent(Monday's) lab results are not all good:

• WBC count dropped to 3.3
• Hemoglobin down to 8.3
• Hematocrit down to 25.3

These are not the worst numbers ever, but the were taken Monday when I thought I felt fine and they indicate a downward trend from the previous week. I feel considerably worse now and can't wait for thus coming Monday's results to come back, and hopefully better. It's still unpredictable how my body reacts to immunosuppressants and the end results on my lab work and the way I feel. I am once again aware of the ever-present nagging concern of dropping numbers and their effects on real life. 

2. Pretty sure I've got the flu.

Thursday, Friday and Saturday have been rough. 

Congested, relentless cough, headache, body aches, low grade fever, ugh.

I remember watching both kids go through this recently and it didn't look fun for them.  Its not for me either. I can't remember the last time I had the flu, and because of transplant, I couldn't take the flu shot this year.  My nurse's cautions about transplantee's pneumonia risks keep echoing in my head when I cough my deep, croupy cough.

I realize this situation is not disastrous, just another reminder for me that while I am on track for a longer, healthier life, there will be bumps in the road. I've got to take care of myself, be realistic and positive with my health and flexible in my expectations.

So, if you can, please keep your fingers crossed. I have more blood work to do on Monday, and then waiting for results to come in, probably Tuesday or Wednesday.  I'm hoping for improvement from my sagging numbers, while simultaneously trying to prepare workarounds in case they continue to drop.  Life is a balancing act I've come to accept...and there's lots of waiting.

And, according to Dr Seuss(who I often lean on for advice):

So be sure when you step, 

Step with care and great tact.

And remember that life's A Great Balancing Act.

And will you succeed?

Yes! You will, indeed

(98 and ¾ percent guaranteed)

Pretty good odds...

 

Trending up

• All my bone pain is gone! I am relieved.
• My WBC count is 4.14, a huge improvement from the lagging 1.6
• My RBC count, h&h and basics are mediocre, but still improved since the previous weeks. 

All of this concrete improvement further confirms rejection as the cause of my most recent issues. My doctor has already determined this to be the case, and I am relieved to see further definitive results backing his theory.

My immunosuppressant and blood thinner levels are still all over the place. More adjustments and weekly labs are still necessary for an undetermined amount of time to stay on top of it. I'm still experiencing side effects from the immunosuppressants, but it feels like this is simply a necessary evil.  I'm hoping, with time, balance, stability; the tremors, numbness and dizziness will settle down.

All in all, my lab work is trending in the right direction. I'm trying to be realistic in my expectations of myself and my body. I finally work up the motivation(and absence of pain) to go to the gym today.

I take a Zumba class. I know I need someone else, peer pressure and music to motivate me. It is hard.  Funny thing is, it is probably the easiest Zumba class, with the slowest pace, I've ever taken. The instructor is new and a little nervous...lucky me! I have difficulty finishing sets and keep uncharacteristically peeking at the clock to see just how much longer I have to be done.

Towards the end, the instructor, urges everyone to finish strong and specifically pauses on me. I see her eyes shift from motivating to concerned. I check myself in the mirror and I am visibly pale and waning. Ugh.

Thank goodness it's cool down time. I'm achy and exhausted but proud to have completed the class. Exhaling and stretching has never been such a relief.

After a twenty minute recovery sitting on the gym couch, I really need to eat.  And I am surprisingly hungry! I actually eat a full, normal sized meal, something I haven't done in, wow...I don't know how long. Yay for Mimi's Cafe's  shrimp salad and chocolate mousse muffin!

Today, I enjoyed exercise AND food.  :)
(I'm aware these are simple pleasures, but I do appreciate the difference.)

It's me, not just my lab work, that's trending in the right direction.
What will tomorrow bring?