Written by Kevin Schnurr
A renal patient seeks clarity amidst ongoing, conflicting reports.
It’s not every day I’m constantly reminded of my status as someone post-organ transplant, but these past few weeks have been a bit much. Ongoing, bewildering, and conflicting articles in my newsfeed and across my Zoom screen about what’s best for me are taking a toll on my mental health. Since my “full COVID-19 vaccination,” a barrage of new information has left me feeling frustrated, angry, disappointed, and frankly, fed-up – for myself and everyone else out there like me.
I’m currently 35-years-old and 7+ years post-kidney-transplant. When COVID entered our day-to-day vocabulary in March of 2020, it was quite obvious I should avoid the pandemic “like the plague.” Per the CDC, those with chronic kidney disease and the immunocompromised are both viewed as “more likely” to get “severely ill.” That’s a one-two punch for me as someone with a rare genetic kidney disease called Alport syndrome! At least one clinical paper in 2020 said maybe my outcome wouldn’t be so bad after all. Then many research papers noted COVID causes acute kidney injury (AKI). This AKI assessment continues. Regardless, I essentially stayed indoors for much of the past 15 months. I masked, then double masked, avoided crowded areas, washed my hands excessively, didn’t travel outside my neighborhood, and didn’t let anyone other than immediate family into my home. Overall, it wasn’t terribly difficult as the U.S. (and elsewhere) ground to a halt.
Nowadays, with American society largely acting as if COVID is a thing of the past, my status as an immunocompromised transplant patient is hammered into my brain almost hourly as stores and bars fully reopen, concerts and sporting events resume at full capacity, and masks are left at home. I am left at home too, with no clear guidance as to how and when that will change.
Transplanted individuals take daily medications to lower our immune systems. This is done to prevent our body from attacking or “rejecting” the foreign organ. A lowered immune system comes with its own set of unique challenges. Certain foods are off the menu, we must remain vigilant around others who are sick as illness can affect us much more drastically, and those life-saving immunosuppressants can have some pretty major side effects. My iPhone alarm goes off twice daily: I am reminded of my need to ingest kidney meds and then I would usually go on about my day. Nowadays, the reminders linger and an accompanying fear sets in.
I was admittedly hesitant to get the COVID vaccine. I’m no microchip conspiracy theorist, but I was concerned the vaccine’s “magical ingredients” could disrupt my body’s happy, peaceful ecosystem with my donor’s kidney. It’s well documented that immunocompromised individuals (roughly 3-4% of the U.S. population) were excluded from mRNA COVID vaccine studies. Subsequent Johns Hopkins data in February 2021 showed the mRNA shots were safe for transplant folks. I got my Pfizer vaccines shortly after learning they may not be fully effective in folks like me, because some protection is assuredly better than none, right? This line of thinking was provided by many, including the experts at Johns Hopkins.
Here’s a summary of the mixed messaging for transplant recipients I have heard or read from medical experts and/or reputable medical institutions just in the month of May 2021:
- Get an antibody test to hear how your immune system responded to the shots
- Don’t waste your time with an antibody test as no one can accurately comment on the antibody count effectiveness anyway and the tests can even be inaccurate
- Your T and B cells may still protect you even if antibodies can’t
- Transplant meds can blunt T and B cell response
- Consult with your doctor to determine if a third mRNA shot is right for you
- A third shot is not endorsed by Johns Hopkins or the CDC
- A third shot can’t really harm you
- A third shot can trigger antibody production which could lead to potential organ rejection
- A heart recipient and transplant surgeon went viral for getting a third shot
- Johns Hopkins would like to do a clinical trial with third shots in transplantees
- France is giving out third shots
- Again, a third shot may cause organ rejection
- Moderna seems to be more effective than Pfizer in transplant patients
- Pfizer and Modera are equally effective – just avoid J&J
- “Mixing” shots may be the best plan
- Those with a long-standing transplant fare better than fresh transplantees
- Mycophenolate (a transplant drug I’ve taken for 7 years) drastically reduces likelihood of antibodies regardless of transplant date
- Lowering the daily dose of your medication may have been a good idea when getting the first two shots – whoops, too late for that!
Phew, is your head spinning?
Then on June 2nd, Bloomberg reported on a transplant patient in Ohio getting shot #4. Yes, 4. “Transplants Force Patients to Amass Vaccinations to Beat Covid,” the article is entitled. But transplant patients aren’t forced to do anything – – except ask more questions. Not only that, but with “breakthrough infections” – those which occur in “fully vaccinated” individuals – no one, especially those with an organ transplant, is “beating” anything.
In speaking to a good transplant friend of mine this week, we both half-agreed that maybe we should NOT have been vaccinated period. We’d both made it this far without COVID, after all. We also both laughed and acknowledged we likely spend more time on webinars about COVID and transplant patients than our actual nephrologists. In my experience, some physicians seem hesitant to openly share vaccine efficacy data with their transplant patients, fearing those informed individuals would then completely shun the vaccine. Other doctors simply aren’t aware of the current data.
The generally accepted “honor system” approach regarding vaccination status is a complete and utter failure. I can present my “fully vaccinated” card. Do I have antibodies? I’m not sure because I’ve been repeatedly told in May NOT to be tested. Maybe I unknowingly have a great count and should feel better about things instead of writing an op-ed on how upset I am!
So what am I supposed to do? If the answer is just to hang tight, leading organizations need to stress that fact instead of providing conflicting information about ongoing observational studies in transplant and immunocompromised folks. While transparency is appreciated and I have utmost respect for these researchers and organizations, the news media is warping data to construct an inaccurate narrative. If the third shot is as risky as some say, why is this message not more widespread when headlines of multi-vaccinations are now clogging my newsfeed? Why am I a sitting duck who apparently isn’t entitled to know my antibody status while others get to “go out and play?” Am I a fool for being afraid of seeing my friends’ unvaccinated young kids?
I sat in a packed room at a local lab this week. I was there to do routine blood work to assess the function of my renal transplant. Perhaps others in the room were there for a similar reason. Maybe some were getting antibody tests, against better judgment. All I can say for sure is if there were any other transplantees or immunocompromised folks in the room, they’re probably just as confused as me.
As the lab technician took my blood, she commented that I must be best friends with my kidney donor and see him often. I noted he’s a father of two young (and unvaccinated) kids. The entire family contracted COVID in February 2021 likely due to the children being exposed at school. I haven’t seen my kidney donor in months. The stark reminder of my transplant situation hit me once again. My iPhone blared as I walked to my car. Time for my daily meds.
About the Author:
In 2012, at the age of 26, I went to an Urgent Care clinic and learned my nausea and fatigue, presumed to be the flu, was in fact something far more sinister. Quick lab work in the subsequent Emergency Room visit indicated 7% kidney function. A biopsy revealed I have Alport syndrome, a hereditary kidney disease which causes kidneys to decline in function over time and frequently results in hearing loss and/or eye abnormalities. I spent two years on peritoneal dialysis, plugged into a cycler machine for 10+ hours nightly, until my best friend saved my life by donating a kidney to me in 2014. I’ve worked in the renal community for close to a decade advocating for kidney and organ recipient rights and education.