Kidneys are the issue
On Monday, at her BMT doctor’s visit, Teri had the first discussion about what might happen if the BK virus continues to damage her kidneys (BK nephropathy). About 20% lose their kidneys as a result of this damage. Indeed, she has progressed from hemorrhagic cystitis, inflammation of the lining of the bladder and kidney to nephropathy, a deeper injury to the kidney substance itself. The potential end result would be that instead of urinating, she would undergo hemodialysis three times a week to remove buildup of waste products.
Is there a possible sliver of silver lining, yes there always is? The virus infection would finally burn out since the kidneys and bladder are the only targets for BK. Teri said she might actually prefer that over the continuing painful bladder spasms.
She was also told the alternative to the hemodialysis would be a kidney transplant. She said oh yeah it would be another chance for complications and believe me she knows complications.
One reason for this predicament is that the available antiviral agents aren’t very effective against the ‘innocuous’ (for health individuals) BK virus. The second is that we need her ‘baby’ lymphocytes to start acting like a trigger-happy teenager. In military terms, that means arming and targeting the missiles. Usually that happens as they pass through the thymus gland fort which turns on the warhead and provides the GPS. Unfortunately, in elders, the thymus is semiretired so it takes much longer to target lymphocytes. We need them to mature now!
Although the possibility of renal failure was discussed in clinic as if another bump in the road, perhaps one is entitled to label even a major complication a so-called bump when compared to death in the face of life.
Teri continues to struggle mightily with edema (swelling) from her waist down to the point that she has difficulty walking. Last week, when they suggested IV fluids to flush her kidneys, I requested that they halve the normal saline to lessen the chance of sodium and fluid retention. The ‘home care’ agency continued to deliver IV fluids over the weekend, but I unilaterally decided to withhold them because of my fear she would retain even more fluid. After watching her balloon this weekend without supplemental fluids, it was the right decision, validated by the team.
It is as they say ‘between da rock and da hard place’. That is, between the need to flush out the kidneys vs. the risk of fluid retention and need of more diuresis and paracentesis.
Inimitably, as Dr. H. points out, the BK virus is really her only post transplant issue. Doing the math, it means that 99.9% of processes are going right. But even that very positive equation isn’t much qualitative solace to sooth Teri’s daily symptomatic struggles.
She was calm yesterday about these prospects. That’s her strength. I am the quiet catastrophizer.
She will get a nephrology consult on Friday.
Existential snippets
Teri is alive. Teri is alive!
Dr. H. reemphasized this week that after her relapse almost exactly a year ago, few on the team predicted she would still be here a year later. Yet, we are dealing with significant disability and poor quality of life. Life is not near normal. She may losing organs.
As I think about the alternative …
We are dealing with it, once again, on a day-to-day extemporaneous basis.
It seems to be the only way to get through it.
My support hours
I listened to the long term care insurer query Teri about her home care needs (e.g. bathing, dressing, walking, laundry, cooking, medication, Day Hospital …), and the potential number of hours of support required. After subtracting the sleeping hours, work hours, and my work out/miscellaneous time, I calculated that I am spending 60+ hours a week in my support role. More than a full time job, on top of a job.
Prayers and thoughts
Thank you all for your thoughts, prayers and for listening. For those who need a focal point, ‘tis the BK virus and nephropathy. We need her lymphocytes to get growing, become armed and aimed, now before it is too late.
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