Dear Friends and Family,
In my recurring fantasy, I want our home to be filled with nothing but wine and roses. I want each succeeding day to be better than the last. But in reality, all seven-month post-transplant patients face complications.
When Nancy has a “busy” day (going to the store, entertaining a guest, taking too long a walk), the next day she is often fatigued. Most of the time, the following day will be spent in bed—and if a bodily system changes even slightly, we brace ourselves.
At the six-week post-homecoming mark, Nancy experienced a major change. Over a three-day period, her GI tract became increasingly irritated. An emergency trip to the Blood and Marrow Transplant Clinic left my own stomach aggravated nearly as badly as Nancy’s.
“Well, Nancy, we should have results back from your culture by tomorrow. If we don’t find an infection, we’ll have to consider the other possibility—graft-versus-host.”
I masked a deep, audible sigh as I heard this unwelcome news. Things have been going so well for more than a full month. Yet in a heartbeat, we receive a reminder that we are still part of “transplant world.” For us, each day is surely precious. But each day can also be fragile.
Nancy squeezed my hand, comforting me. I felt slightly embarrassed because she was the one with the IV fluids running into her vein. Her gesture did give me renewed strength, even resolve, to face the unwanted possibilities. But this time, the news was once again good.
“Nancy, now that we’ve filled up your tank, you can go home. But you need to drink, drink, and drink. If you get dehydrated again, we’ll have to put you back in the hospital.” Once again, Nancy took these words as a personal challenge. By the time we received a phone call the next day, there was a bottle of water or Gatorade on every table and night stand in the house.
“Nancy, this is Rene. We already have our answer—your stool culture grew C. difficile.”
I have lost count of the number of GI germs Nancy has contracted, but this was a new one. C. difficile (Clostridium difficile, or C. diff) is a gastrointestinal bacterial infection that affects patients who have been on multiple antibiotics. Nancy’s giant pillbox overflows with medicines that probably make such news inevitable. In fact, Rene said it was surprising she hadn’t contracted C. diff earlier.
“We’ve requested a medicine called Flagyl at the pharmacy, Nancy. Remember, keep drinking. We want to see you back in the clinic in five days—unless you’re having problems.”
Nancy has continued to drink vigorously, though it is oftentimes a struggle.
Flagyl is a particularly foul medicine that leaves any patient taking it feeling nauseated because of its metallic taste. Nancy was not the exception. Even though she is currently on twenty-eight pills per day, she lamented, “I would rather take twice as many pills instead of swallowing one Flagyl, Winnie.” She pinched her nose and forced down the first Flagyl pill of the day. She would have to swallow three more before bedtime. When I heard the retching sound of dry heaves, I raced to the kitchen to obtain a spoonful of peanut butter. (It is the best food we have discovered thus far to mask the horrible aftertaste of Flagyl.)
The next four days were not exactly fun, even though we were home at Woodland. When it was not raining, it was gray—inside and out. Nancy felt terrible, and her stomach discomfort and activity remained unchanged. Sleeping became her favorite activity, making the time pass and getting her to the next pill-taking session. On day five of the Flagyl regimen, we took another stool culture to Salt Lake City. By the end of the following day, the results were ready.
“Hello. This is Malinda from Bone Marrow. Nancy’s culture is still positive for C. diff. She must have a resistant germ.”
One of my top-ten fears has always been that Nancy might acquire a resistant germ. I gripped the phone tightly as I pondered the significance. I realized that Nancy can’t exist with everything running like a broken faucet through her GI tract.
“We need to change medicines, Winnie. We’re going to try Vancomycin.”
(I know this drug well. Vancomycin, or Vanco as it is routinely called, is one of medicine’s most powerful drugs. It is used in situations when all other antibiotics fail.)
“Thanks Malinda. Nancy is asleep, but I will leave her a note and run to the pharmacy immediately.”
I hid my fears from Nancy, trying to be a husband and not her doctor. She was able to start the new medicine within the hour because I elected to obtain it in Park City, rather than the longer drive to the hospital pharmacy in Salt Lake City. Disappointingly, the day after we started the medicine, Nancy’s bathroom trips increased and we had to return to the hospital for IV fluids and a repeat culture. Thankfully, Nancy was allowed to come home, but more of each passing day has been spent sleeping. I held my breath each time the phone rang. When another day dragged past, I knew the culture results had to be available. I couldn’t wait any longer.
“Blood and Marrow Transplant Clinic. This is Marilyn.”
Marilyn was the secretary of the Blood and Marrow Transplant Clinic. She was a kind, pleasant, grandmotherly woman—but she was new.
“Hi Marilyn, this is Nancy Winn’s husband. I wondered if you could pull up Nancy’s stool culture results on your computer. It’s been two days and I believe the result should be ready.”
“Certainly. Let’s see. The C. diff. culture? Here it is. It looks like it’s positive.”
My heart sank like a boat’s anchor. My eyes were moist. I had done some medical reading to see what happens if the Vanco didn’t work. Shockingly, no other options were listed.
“Wait. I’m sorry, Winnie. That was the first culture, done on May 12. The one done two days ago on the twentieth is negative.”
My heart returned to its proper anatomic position after tumbling over and over with joy.
“Thank you so much, Marilyn.”
The Vanco had done its job. Nancy’s C. diff., or “my bug” as she tells her friends, is gone for now. But deplorably, Nancy’s stomach problems still persisted. So we visited the clinic the very next day to be certain we were on the correct course.
“I know it seems strange that with the C. diff. gone you are still having difficulty, Nancy. We need to wait until you finish the Vanco course to see if your bowel recovers. It’s been through a lot.”
I didn’t verbalize or say what I was really thinking: “Her whole body has been through a lot, Malinda.”
But we know how to wait.
If nothing else, leukemia has taught us patience.
The next day’s brilliant sunshine lifted Nancy’s mood. Even in her weakened state, we ventured outside to observe the many birds returning from their winter “homes away from home.” As the distant mountains on the horizon slowly swallowed the sun, Nancy gripped her pillbox. She raised her glass as she took the last Vanco. “To the passing of ‘my bug,’” she whispered while we clinked glasses filled with strawberry-flavored Gatorade.
Despite the world’s most comfortable bed, my next two nights were restless. But by the third night, I was finally lost in dreamland and Nancy was again eating, walking, and most importantly, visiting the bathroom less regularly.
Summary: Nancy had yet another setback, but she is once again back on track.
Our very best,
Winnie