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.