Bonnie Update: From Dr. Kristen Hege

I was lucky enough to swing through Minneapolis on a business trip to
Indianapolis this weekend. I wasn't exactly sure where Indianapolis was, but
figured I could probably get there through Minneapolis, which turned out to be
the case.

When I arrived at Bonnie's apartment Sat night I had 3 immediate reactions: 1)Bonnie looked a lot better than I expected, 2) the apartment was definitely inhabited by a transplant patient as evidenced by the 12x18 inch weekly pill box, the crate of pill bottles, and the refrigerator half filled with saline bottles and infusional medications, and 3) the place was a sauna.

Knowing how undergoing a BMT has a way of changing one's physical appearance I really expected Bonnie to look the worse for wear, but the same classy, smiling Bonnie was staring back at me. One residual silver lining from all of the skin rashes Bonnie had in the hospital is diffuse hyperpigmentation of her skin, in other words a "suntan". This makes her look relaxed and healthy. She did comment that every time she rubs her skin with a washcloth in the shower the washcloth turns brown so the suntan is slowly rubbing off.

She doesn't have much body fat (did she ever?) so she gets cold easily. As a result she keeps the apartment at about 85oF. It didn't take me long to figure out why her friend Katie was always wearing a tank top. When the heat got unbearable we would escape into the guest room, shut the door and sit by the open window for a few minutes.

On Sunday morning Bonnie self-administered her daily dose of IV gangyclovir (the new medicine started to control the HSV6 infection) using a pressurized infusion ball. Then Katie, Bonnie and I headed to clinic for her daily visit. I must admit, I was impressed that they have clinic open 7 days a week. At UCSF we only have clinic Mo-Fr (chalk one up for the Univ of Minn). On the other hand their waiting room doesn't have an expansive view of the GG bridge, Marin headlands, and SF bay (chalk one up for UCSF). While in the waiting room we ran into a nice guy in his 30s whose wife was in clinic. She had an unrelated BMT for CML and was Bonnie's next door neighbor for much of her inpatient stay. She also has 2 small children and therefore a lot in common with Bonnie. She was having a lot of trouble tolerating any kind of food by mouth and was still receiving full IV nutrition and was too weak to really walk. By comparison it made Bonnie look like a track star.

We spent about 2 hours in clinic waiting for labs and a visit by Dr. Weisdorf. No electrolytes or blood transfusions were needed so we got out in record time(most clinic visits are 4 to 5 hours). Her WBC count was dropping after stopping her growth factor shot a few days earlier, but not so low that she needed another shot. Her liver and kidney tests were normal. Her blood sugar was a bit high, but Dr. Weisdorf commented that it was just a sign that her body was responding to a great stress and that this would correct itself over time. We spent awhile talking about the HHV6 infection and its possible role in suppressing the engraftment of the first 2 cords. They don't monitor for this infection routinely post transplant so they don't really know what the prevalence is, but they have found it now in at least 3 patients with delayed engraftment, suggesting that it might be playing a role. Her blood levels of virus had increased slightly in the past few weeks prompting the initiation of the new anti-viral, gancyclovir, which Bonnie administers at home by IV infusion twice daily. This drug is a double edged sword. It could either improve her blood counts by controlling the virus or lower them by suppressing her bone marrow . . . Time will tell.

After clinic we headed back to the apartment for a lunch of grilled cheese sandwiches and then went out for a walk around the lake outside her apartment. Bonnie would walk for about 10 minutes, then sit and rest on a bench, walk some more, rest; she was able to keep going This way for about an hour. After the walk she was ready for a nap, but only slept for an hour or so. She did comment on how easily she tires, but then her friend Katie reminded her that just a week ago she could only walk for 10 minutes, period, so she's making great progress.

All in all, speaking as someone who takes care of a lot of transplant patients, Bonnie is doing really well at the moment. Now that the initial scare from the slow engraftment seems to mostly be behind her, her current status is very encouraging. There's no active GVHD, she's eating well, her weight is stable, there's no evidence of infection other than a bit of ongoing HHV6, and the transfusion requirements and electrolyte problems are pretty routine. It remains unclear when she will return to SF, but her doctor had to admit that she wasn't exactly going back to a medical backwater, so she's negotiating for early December.

For now the days go by with a kind of medical monotony . . . Sleep, medications, eat, clinic, transfusions,eat, walk, sleep, eat, more medications, sleep and repeat, punctuated by visits from family and friends. It kind of reminds me a bit of the movie "Into the Void" about the incredible tale of survival of a mountain climber with a badly broken leg who crawled down the mountain to safety after sliding over a cliff and falling into a crevasse. He measured his progress over successive 20 minute/50 yard increments over and over for 5 days, focusing at any given moment on the achievable goal of just continuing to move forward for another 20 minutes. Eventually, against all odds, he dragged himself and his broken leg off that mountain.

Kristen

Gib's Note: For photos from Kristen's visit, click here.