Wrinkle: Day 10 (Nov. 13, 2008)

In Uncategorized on November 14, 2008 at 5:07 am

I was stepping out the door this morning on my way to Toronto General when my cell phone rang. It was Alex on the other end. She got her phone hooked up (outgoing calls only at the moment, folks) and she was telling me to come quick. She wanted to see me soon as possible as she’d had a rough night.

I’d left her to sleep last night around midnight. Her oxygen saturation was good, and she wasn’t requiring the assistance of too much O2 from the wall port. She actually seemed to be in pretty good stead. Unfortunately the overnight time is difficult for many lung transplant patients. When they sleep, they shallow breathe. When they shallow breathe their “sats” can drop and then an entire spiral occurs. A downward spiral. She had to get the doctor to come see her. The doctor gave a listen to her chest, checked her sats and concluded that the fluid backup was continuing to be a big problem. It’s just not going away. Her body would need some extra encouragement. She was put on an IV dose of diuretics, which meant she would get little rest as she was literally up and down all night eliminating fluids.

The doctors have now put Alex on a bolus of anti-rejection medication. This means large doses of really heavy drugs, steroidal drugs that are delivered in order to “trick” the body into accepting the foreign bodies that are her new lungs. Cyclosporine, prednisone… At this point, though they do not have 100% proof, they will begin to treat her for rejection. Not uncommon, sounds much scarier than it is, but it’s still terrifying for all of us. Particularly Alex. These drugs are so strong that one of them induces what is tantamount to diabetes.

The goal is to be proactive and nip any sort of rejection in the bud. If she is really ejecting, Alex is fortunate in that she is in hospital. The nurses told us that a great deal of people have rejection when they are at home, and they miss the symptoms. Sometimes rejection can even be asymptomatic, and a post-transplant patient can just be feeling fine at home and have a sudden systemic crash. In fact, they also let us know that almost every transplant patient can expect to have at least two rejection episodes. It is not a rare occurence, and moreover it is something each transplant patient must keep in the front of his/her mind. So in Alex’s case the goal is to recognize the potential of rejection, treat it early on and get all the drugs in balance and working with Alex rather than against her. 

Tomorrow morning she will have a broncoscopy. This is a standard (albeit invasive) procedure that is done at two weeks, a month, three months and so on…In Alex’s case they’ve decided to do the first at 10 rather than 14 days.  A camera will be lowered down her throat so that they can get a look deep inside the new lungs. There is also a tiny blade on the end of the tube that will take a tissue sample, a sample that can be put under the microscope and examined for any pathologies. This is the only surefire way to ascertain if she is rejecting. The results won’t be ready until after the weekend because the work is being done on a Friday (surprise surprise). So in the meantime she will be treated as if she is actually rejecting. And so we hang on a tenterhook, and Alex goes through another gruelling day of uncomfortable tests.

Despite this sombre news, there were great moments today. Gary told Alex it was her best day yet walking. She did the longest distance yet, and her oxygen sats were great. She worked hard at her incentive spirometer, and was in good spirits despite what was looming in the shadows. I know, this all seems at odds with the fact that she might be rejecting. But all of this stuff is about achieving a delicate balance.

Alex and I talked and read a lot about rejection to make tomorrow’s broncoscopy less scary. Before we got her to go to bed we watched a slideshow of a road trip we made in 2007 from Las Vegas to San Francisco. It was such a fun and adventuresome trip. We drove across Death Valley in July on a backroad. Sat on the beach and looked out at the Pacific Ocean sunset. Stayed in fancy hotels in San Francisco. We talked about how we’re gonna do it next time, how we’re going to be able to go on big long walks on those beaches and streets instead of taking in the scenery from a jeep. We can’t wait until we can do it again.

Big prayers for Alex tonight, friends!

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