As described in my Jun 23 blog post, I underwent a bone marrow biopsy that day. At the time, the hematologist mentioned it could take a couple of weeks for the results to be available. I replied that I was scheduled for a donor nephrectomy the following week (Jun 30) and thought that the transplant nephrologist had requested a rush on this. She said she would see what could be done, but didn’t make any promises.
On Friday (Jun 25), the transplant nephrologist called and said she had reviewed the preliminary test results. So far, no abnormalities were found, but the complete results were not available yet, so my surgery would need to be postponed.
Well, this is disappointing. The UWMC transplant team schedules elective surgery only once a week, on Wednesdays. Their calendar is booked about two months in advance. My schedule is flexible, but my wife, Susan, travels extensively, so it took a considerable effort to find a two-week period when she is home (I’m not allowed to be unmonitored while on opiate pain meds). And now with less than a week to go, I have to start over.
Even worse, there is a kidney patient who has been waiting several weeks in anticipation for this transplant surgery who will now be told the surgery has been postponed. This patient has AB blood type, meaning they can accept a kidney from a person with any blood type. (I know this because I am AB blood type and I can only donate to someone with the same blood type.) This patient is also at the top of the UNOS organ waiting list, meaning they have a good chance of getting at least one offer of a deceased donor kidney before my surgery is rescheduled.
Transplants from live donors lead to much better outcomes than donations from deceased donors. So this patient may need to make the tough decision whether to take a deceased donor kidney when offered, or pass on it in hopes of receiving a live donor kidney from me. And they need to make this decision without knowing why the original live donor surgery was postponed or how likely it is to get postponed again, or even cancelled. This truly sucks for them. I wish there wasn’t a waiting list and hope that my future volunteer efforts to help patients find donors can help alleviate the shortage.
Yesterday (Jul 6), I received an email from the transplant coordinator asking if I’ve had my follow-up appointment with the hematologist. I never scheduled a follow-up appointment with SCCA. I just assumed the biopsy results would be transmitted to the transplant nephrologist at UWMC and I would never need to get involved.
I wonder how many patients go in for a biopsy and then become so distraught that they fail to attend a follow-up appointment in an effort to avoid receiving bad news. Susan says it is pretty unlikely since they already made the decision to undergo the biopsy. If a patient is in denial, they would more likely just ignore the referral to get the biopsy in the first place. Without good tracking software, the referring physician may never know if the patient actually followed through and got the biopsy. Using electronic medical records to drive CRM is probably an area where HMOs and other integrated health providers can outperform standalone physicians.
Once they get the biopsy, Susan is sure most patients would call every day afterwards to find out if test results were available. I, on the other hand, just assumed they would be negative so didn’t bother to follow-up.
I paged the hematologist and left her a message. She called back and left me a message saying my “test results so far are normal.” The attending physician also responded and left a message saying the same thing and added, “your low WBC appears to be clinically unremarkable.” The messages are reassuring, but ambiguous. Do they mean that there are more biopsy test results to come, or that they are done with their tests but can’t speak to additional tests that the UWMC transplant team may want?
After another day of more phone calls and emails, I determined it is the latter case. The transplant nephrologist is satisfied no more tests are needed and I can be a live kidney donor. The earliest that UWMC can schedule the surgery is Wed, Aug 22. Of course, Susan is out-of-town that week and the earliest that she is available for a two-week block that starts on a Wednesday is Sep 29. The UWMC adds me to the schedule and the countdown clock starts again.
For those keeping track, Sep 29 is nearly three years after I volunteered to become an nondirected kidney donor. I first contacted the National Kidney Registry and the Alliance for Paired Donation on Nov 25, 2007. I have to admit that having spent all this time waiting has given me the opportunity to research the many complex issues surrounding the kidney disease crisis and develop an action plan to help people facing ESRD.
My kidney donation timeline