Last Tuesday, the doctors decided to give Anya something called an IVIG infusion. The idea was to boost her immune system to help her fight off this lung infection. Most people don’t have a problem with this blood product, however, Anya had a really bad reaction to it.
The nurses started the infusion around 2pm. The infusion is just a slow drip on an IV line. Around 5pm, Anya started getting really cold. We wrapped some blankets around her. The nurse asked us if we wanted to stop the infusion or not. There was just a little bit left, so we just kept going with it. By 7pm, after the infusion was finished, Anya’s blood pressure shot up to 193/110, her resting heart rate was 120, and she was having really really hard time breathing. She was on four liters of oxygen before the infusion, but they had to pump it up to 15 liters with an oxygen mask and she was still gasping for air.
I’m not going to lie, it got a little scary. Okay, maybe a lot scary.
By morning time, Anya was still gasping for air. Her vitals had improved slightly, but there was still a lot of concern. She didn’t get any of sleep, nor had she eaten anything since 2pm the day before. The doctors ordered another bronchoscopy for 1pm. This was Wednesday. I don’t know how smart it was to do another bronchoscopy in her state, but it turned out to be the right decision.
After removing a ton of mucus from her lungs again, with a little bit of twilight medicine, by 9pm Wednesday night, Anya was back. Even though she was still a little bit dazed from lack of food, breathing in CO2 (lungs unable to process the oxygen), various drugs in her system, we were actually able to have a conversation again.
After the bronchoscopy, the docs decided to move her to the CCU (Critical Care Unit, aka ICU) for round the clock care, just in case. They wanted to move her out of the ICU on Thursday, but we opted to stay for another day. On Friday, she was moved to the Acute Pulmonary Unit (APU), which has more devices to deal with her lungs.
Needless to say, Anya will not be getting the IVIG infusion again. I asked around the Duke Lung Transplantees Facebook group if anyone else had this same reaction, and no one else had this bad of a reaction, so it looks like this was just an anomaly. BTW…if you’re going through the lung transplantation process and want a great resource of information, the Facebook group above is the place to be.
So, here we are 4 days later. Anya’s feeling much better now. The infectious disease doctors determined that she has a “gram negative bacteria” growing in her lungs, along with some sort of mycobacterium. Not good news, but she’s been through this before. The mycobacterium is of concern because most transplant centers will not transplant patients with certain strains. It takes about 3-6 weeks to determine the exact strain of mycobacterium that she has, and another 6-18 months of antibiotics before it’s gone for good. The good news is that the previous strain of mycobacterium that she’s grown (Mycobacterium Avium Complex, aka MAC) has been easier to treat and Duke is one of the few centers in the world that still transplant patients with this strain. We just need to figure out if it is indeed this strain or not.
I contacted our transplant coordinator at Duke last week. It looks like Anya has been cleared of any liver problems by the two liver doctors at Duke, thus making a liver transplant unnecessary. We’re still waiting for the liver doctors to meet with the lung doctors to fully clear Anya for another transplant. That meeting should happen next week some time. However, a lot still hinges on this mycobacterium strain. My guess is that they probably won’t do anything until they’re certain that mycobacterium is not a factor anymore. Sigh.
The waiting continues…like usual. If there’s anything that’s a constant in this process, it’s the waiting. We’re always waiting to see what’s around that next corner. And as we make that turn, trying to get a glimpse of what’s next, it’s almost always unpleasant, but nothing that we haven’t been able to get around yet.
If all goes well, then Anya will be sent home with antibiotics in the next few days….