7-29-2022 A good visit with the C.diff specialist

(Tricia)

Yesterday, we went to the appointment for Linda, the one that magically materialized earlier this week with the infectious disease doctor, Dr. Erik Dubberke. Everything went very well. We woke her up around 6:00 a.m. so we could gradually get her ready for the 8:00 a.m. pickup. And her mood was much better than it was on Saturday when she went to the primary care doctor. We had quite the contingent for the trip: Linda and the caregiver traveled in the medical transport van, while Ed, Marilyn, and I met them there in my car. Not quite the festive family outing we would choose, but it was still good to be out of the house!

Once we got to the doctor's office (in St. Louis' Central West End, which is about 25 minutes away--the farthest we've had to go for an appointment for her), we waited a long time to see Dr. Dubberke. Her appointment was at 9:20, but he didn't actually arrive in the exam room until about an hour past that. But he explained why--he spends a lot of time talking with each patient. He spent a good hour with us (Linda, our caregiver for the day, and me), explaining his reasoning for his approach and answering our questions.

First, he said that Linda has had more than enough vancomycin to kill the C.diff (her current 10-day regiment of 250 mg, 4x/day has likely built up in her system to 1,000 times what's necessary). He recommended that she change to a much lower dose (125 mg, 1x/day) for ongoing maintenance. He asked her to come back in a few months to see how that regimen is working for her.  

Second, he explained the difficulties surrounding a potential fecal matter transplant. After having that procedure recommended to us by multiple doctors along the way, this doctor was the first to really explain what was going on. The procedure hasn't been approved by the FDA yet (which I had NOT known). When he believes a patient will benefit from the procedure, he signs that patient up for one of many current clinical trials. The clinical trials are readily available, so most patients would have no trouble accessing the procedure even though it is not FDA-approved. Unfortunately, he said, Linda would not qualify for these studies because of her cognitive deficits and because of the fact that she is on suppressive antibiotic therapy for her hip infection. 

It's not that he took the procedure completely off the table, but he explained that Linda would be a candidate only under a set of rather difficult circumstances. First, she would have to get to a point where her hip seems stable, so that we would be willing to "roll the dice" to stop the amoxicillin. But he explained that it is impossible to test whether infection is present in the hip. The hip could be stable for months or even years, and then still suddenly turn up infected. Taking her off the amoxicillin will always be a risk.

And, second, she either would have to show cognitive improvements OR the FDA would have to approve the procedure (so that she wouldn't have to qualify for a clinical trial). The procedure itself is simple, quick, and inexpensive, so once it is approved, it will become widely available to anyone whose doctor orders it.

Those are obviously large hurdles to overcome! So after all my hoping that she would be able to get this procedure, we finally are putting the possibility of the transplant aside. I'm upset that multiple doctors raised FMT as a possibility, when she truly wasn't a candidate--at least not in her current state. The only thing that Dr. Chambers said (he's the infectious disease doctor that treated Linda so badly at Mo-Bap during her last hospitalization) was "no fecal matter transplant." That was his only message, sent through the hospitalist, with no additional explanation at all (one of many reasons he was an awful doctor). Had he laid things out as thoughtfully and sensitively as Dr. Dubberke did yesterday, I would have completely understood.

But Dr. Dubberke did say that the low-dose vancomycin should keep Linda from getting C.diff again (thank goodness!)--her multiple recurrences have stemmed mainly from physicians prescribing too-high doses for too short a time. If for any reason it did come back, he said that would recommend a more targeted antibiotic called Dificid. I've read about this drug in my past research--it's more effective for an active C.diff infection than vancomycin. Better yet, it takes care of the C.diff infection only, without destroying the good bacteria in the gut as vancomycin does. The problem: It can cost between $5,000 and $10,000 for a ten-day course, and most insurance plans won't pay for it.  When I brought up the cost, the doctor reassured us that he could prescribe the drug through a specialty clinic at Washington University that offers it at a very steep discount. 

He also recommended a change in diet, noting that a "diet filled with plant-based fiber and lots of it" would help build up the good bacteria in the gut. Unfortunately, he followed that by saying that such a diet would only work to heal the gut biome once Linda is off the vancomycin (and the amoxicillin, I assume). So that was another disappointment. We really can't help her build up her defenses while she's on the antibiotics. That said, he noted that such a diet is healthy for a range of conditions, so it could have other benefits. Plus, if we change her diet now, she will already be eating well when and if she is able to come off the antibiotics. 

Linda is still exhibiting more confusion than usual, which the doctor chalked up to the C.diff infection still clearing. But she is getting clearer, so we'll just have to see how she responds to this new regimen over time.

So, this was a second really great visit with a new doctor for Linda--which we celebrated by picking up a great lunch from a favorite Asian restaurant nearby! 

Next on the list is to try to bring in an in-home physical therapist or trainer who specializes in geriatric cases like Linda's. I just heard back today from the office of Dr. Kevorkian (still can't get used to that name!), her new primary care physician. He is willing to send an order to the PT agency of our choice. We also could go with someone who is more like a personal trainer or coach, who might not be as militant as full-on PT folks tend to be. So, it's just a matter of choosing the right person for Linda's particular (and, I admit, peculiar!) needs.

Also, the hospice nurse came to visit today and said, because of the C.diff, they would requalify Linda for hospice. Because of the benefits of hospice (which pays for a lot of the drugs, supplies, and services), I've decided it is better to continue with Pathways, and simply pay for any physical therapy out of pocket. Now that I know we can get a doctor's order for PT, it does not make sense to leave hospice while they're still willing to cover so many other expenses. 

Although she still has so many challenges, it has been a good week.

QUICK UPDATE:  Minutes after I finished this post, Dr. Kevorkian called. He sent a mobile blood draw team to the house today to take some blood from Linda, and all her blood work looks "really good."  He also got the report from Dr. Dubberke, and he was surprised. He said, "I can't believe she wouldn't qualify for a clinical trial--I sent patients to get this procedure all the time, even if they are on amoxicillin!" Amoxicillin is not broad-spectrum, so it is unlikely to trigger C.diff. So, he said, we might need a second opinion, once Linda gets stronger. He also said he would most certainly order physical, occupational, and speech therapy for Linda, and he actually recommended that, if she continues to get stronger, I go back to the original plan of having her discharged from hospice so that all those therapies would be covered.

 Good grief, I can't keep up--but I certainly will keep trying!