Here's to a healthy 2017!
I haven't updated at all since Thanksgiving - wasn't quite sure what to say since for a while we didn't know anything was wrong, then we didn't know what was wrong and didn't want to alarm anyone, AS THE NEW KIDNEY HAS CONTINUED TO WORK IT'S MAGIC, and then we pretty much figured out what was going on but wanted to see what would happen.
Here's the short version: Parvo B-19. It's a virus most people are exposed to in childhood, often known as 'slapped cheek' of 'fifth disease' and in kids, it's no big deal. In immunocompetent adults it's no picnic, but not that big a deal. In those who are immunocompromised or immunosuppressed it's NOT FUN. We have been so careful about all the hand washing and food handling and Mike has been otherwise healthy so there is a possibility that he had the virus latent in his system, or it just got by us somehow.
A bit of a timeline on post-transplant immune suppression:
Months 1-3 - Immediately post-transplant Mike was given a massive dose of ATG, which has a strong effect on his immune system for roughly 3 months. He has to be extra careful of infection, especially to things that will upset his GI function and he's taking prophylactic anti-fungals, anti-virals & anti-biotics, along with the long-term immune suppression (anti-rejection) medications & blood pressure medications.
Months 3-6 - Mike's system will slowly rebound but he'll still at risk and taking prophylactic anti-viral & anti-biotic medications along with the anti-rejection and blood pressure meds.
Month 6 - The anti-viral goes away, but not much else changes.
Month 12 - At this point Mike's immune system should be relatively normal and the list of meds down to something more manageable! He will, however, take the anti-rejection drugs, at the very least, for the life of the graft - hopefully for a looooong time!. He'll have to be disciplined about the meds, sunscreen and food handling, but with far less worry.
Here's the long version: Around Thanksgiving Mike sort of stopped making progress - especially in terms of his energy levels - and the lab results began to show both his red and white blood cell counts (RBC & WBC) dropping. The Tuesday after Thanksgiving he suddenly developed back pain and woke up Wednesday with a fever. His medical team admitted him and quickly ruled out a rejection episode, much to our relief. Common post-transplant causes of fever (CMV & BK, among others) were also ruled out. The symptoms went away and after thrree days he was released - the assumption being that he had just had some minor viral infection and possibly unrelated back pain due to weeks of reduced activity. Certainly Mike's nephrologist had come to the conclusion that Mike is 'not typical' but we knew that :) They continued to adjust medications, hoping his counts would rebound and there was some progress, but there was also enough worry that further tests were done after a second back pain & fever episode the week after he had been hospitalized.
In the meantime, while Mike was hospitalized I developed swollen and painful hands and feet and my WBC & RBC numbers both dropped. I was uncharacteristically ill for over a week. My doctors ruled out rheumatoid arthritis, Lupus, Lyme & other tick-borne illnesses, but I was clearly fighting some sort of virus.
In mid-December we finally got a diagnosis - Parvo B-19. One call to my doctor confirmed in all likelihood it's also what I had, but what took me days to fight off, simply by taking it easy and working from home for a bit, was going to require four 8-hour IViG (intravenous immunoglobulin) treatments spread over 2 weeks for Mike. Before he got a chance to start the treatments though, the back pain returned and at 3 am on a snowy Saturday I drove Mike from my parent's house an hour into Boston to BIDMC. From 4 am until 7 pm the ER doctors sought to rule out a life-threatening cause of the symptoms; they did an ultrasound on the new kidney to rule out rejection, they x-rayed for structural defect, they debated the effect on the new kidney of various contrast dyes (in consultation with the on-call transplant team), they did a CT scan to rule out an infection and abscess in his spine, all while waiting for a bed to open up on the transplant floor. On Sunday they did an MRI... nothing. The ongoing fever, foot swelling and sensitivity, miscellaneous areas of leg pain, sporadic back pain, swollen fingers, intense pain and increased sensitivity to heat in the hands (relieved only by narcotics and holding on to ziplock bags filled with ice) were all just part of the weirdness associated with Parvo in post-transplant patients. Monday the IViG treatments started, along with several blood transfusions.
Just in time for Christmas Mike got out of the hospital again. This time, we hope it's for good! The IViG takes a couple of weeks to reach full effect and has a long half-life that with some luck will allow him to fight off the virus and protect him until his own system rebounds a bit and can take over. Our thanks again to the incredible team at BIDMC, especially those who take such good care of their patients on Farr 10. Thanks again to our family and friends who keep us moving when we are sick and tired. And, as always, thanks to Jon, whose kidney has been chugging along and keeping Mike's system in better shape than it has been in ages, despite being assaulted with uncommon viruses! in between minor bouts or Parvo symptoms Mike is really feeling better than he has in months and that's what we are focusing on as we start 2017!
Love & Health - Samantha & Mike