Gene’s update: Sunday May 16, 2010, Day +22
It has been a really hard week. I keep thinking it is going to get better, easier. On the neutrophil front things are looking great. His neutrophil count is up to 6.2, and some lymphocytes (about 25% of the white blood cells) are just starting to fill in as well. If that was all there was we could break out the champagne. Doctors say he is in recovery, that it will take 4-6 weeks for him to start making his own red blood cells, and platelets could take a few months. And that part is in the normal range. His mucositis, mouth and throat sores are much better. He is able to eat some soft foods and rates his pain scale at a 3 out of 10, down from 7 or 8. He still has access to the morphine but uses it much less.
Just when we wanted to take a breather, he spiked a fever early in the week, started at 102 and went to 104. Doctor decided to take his central catheter line out thinking that there may have been a staph infection on it. They took it out, but it tested negative for infection. The infectious disease doctor that did such a great job keeping him infection-free for 3 months before transplant, Dr. Redfield, was called in and zeroed in on his lungs again, they ordered a lung CT scan, saw some new areas of concern, “nodules”, and did a bronchoscopy on Wednesday. So far nothing has been identified from everything they cultured but his fever is gone, in fact in the last two days his body temp has gone as low as 95.1. Weird to me, but doc said it is okay. That whole process has been extremely high anxiety, we’d gone through it in January and it is not without risk, but once again went smoothly, he was pretty drugged up for that day. The down side is that without the central catheter he has to be poked for blood draws once a day, and the IV has to be changed every four days. The IV inserts, twice now, have not gone smoothly as they say his veins are weak. Not sure what will happen on that front since it was originally scheduled to remain in place for about 3 months.
Then on Thursday his kidney numbers started going in the wrong directions again, including weight gain. This time the water that he is retaining is mostly in his lower extremities. The last time they thought it was the anti-rejection drug, tacrolimus, so they stopped it, then restarted it at a lower dose. They’ve now stopped it again, substituted a steroid instead temporarily, and are trying to figure out what is going on. After 3 days in which he seems to be getting worse, a nephrologist finally came in today, but they are not responding as aggressively as it seems they did the last time. No diuretics, some water restriction and adding a blood protein, albumin. Gene has most of the same symptoms as last time, except that he feels much worse, his legs so heavy and feet so swollen. His sodium levels are low and he has a bit of the confusion / delerium that he had but the levels aren’t as low and that part isn’t as bad. But he has no appetite, and mostly wants to sleep. Unfortunately he has developed bed sores on his feet and back from being down for over a week.
Another good friend from New Mexico, Terry Hennigan, one of our original partners in No Cattle Company, flew in Tuesday for 24 hours, to see Gene. We’d planned it, thinking that since it was day +17 and the worst was supposed to be over by day +14, that it would be okay. Even though it was the start of his fever, Gene was glad to see Terry, but tired very easily, even though Terry paced his visits. My sister Esther arrived from North Carolina this week and has joined the caregiving team, learning the ropes, already covering shifts. I’ve been there until midnight and Jim has been great about doing the early morning shift and Patty filling in and keeping us all fed and organized. I’m really, really tired. It feels like the last week has been non-stop high alert. The Bone Marrow Transplant unit seems to have almost twice as many patients as earlier this winter, so all staff are busier and more stressed, and there have been more temporary workers, including nurses, which is very scary for me when the nurse is not really trained in that specialty. Fortunately these last three days, we’ve had outstanding nurses.
Gene seems more ill, more fragile, more uncomfortable, to me, than he has at any time since this started, exactly four months ago. It feels more stressful, but part of that is certainly the cumulative effect. His spirits have remained strong and he tries to comply with all requests. Today, he seemed very taxed, not so happy. Needless to say, we are not out of the woods yet.
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