We were at Mayo this past week for a follow up to the last
visit where they found some heart rejection.
The trip started out with a bang, we got into the Transplant House with a room in the basement and when we walked into the room we noticed the sink threw up. After some help from the house came we got the sink unclogged. Then the I sanitized around the sink for our protection. Apparently the room two stories up had plumbing issues two days ago and then the room above our had plumbing problems the day before. The good news was that there was no other rooms under ours.
The good news is that the results of her biopsy show that the rejection is getting better (less rejection not more). For the technical answer her previous biopsy results was 2 out of 4 biopsy samples were rated as ‘2R’ and the latest biopsy result is 3 out of 3 samples were ‘1R’. This may sound worse because now there are 3 vs 2 but 1R is much better than 2R. Bottom line is the rejection is on its way to 0.
The good news is that the results of her biopsy show that the rejection is getting better (less rejection not more). For the technical answer her previous biopsy results was 2 out of 4 biopsy samples were rated as ‘2R’ and the latest biopsy result is 3 out of 3 samples were ‘1R’. This may sound worse because now there are 3 vs 2 but 1R is much better than 2R. Bottom line is the rejection is on its way to 0.
So far she has been on very little anti-rejection meds so
they are adding one to the mix. They are
adding a low dose of Cellcept. She was
on this before but stopped it when she developed the diarrhea because that is a
side effect of Cellcept. The previous diarrhea
was caused by the amyloid in the gut so it was maybe unrelated, time will tell. With the addition of this new drug they will
have to watch her blood counts (platelets, white blood count, etc.) to make
sure they do not go down too much.
She still does have regurgitation on a valve in her heart
(tricuspid valve) but that is not unusual for heart transplants patients. Heart catheterization can cause some of issue
with the value, something about sticking a tube through it while it is open and
leaving it there for a while when it is working can make the valve a little
cranky. This makes sense since it seems to be getting worse with more biopsies. They are not terribly concerned about this though.
Now on to the
hematology report…..
The wennie chemo (Velcade) is still working but has plateaued
or slowed down a lot. The concern that
it was no longer working because the free light chain number (FLC) number went
up. The FLC number went down a few
months ago but this appears to be an abnormality.
What this means is the lower number was a fluke or maybe the test result
was wrong. They consider this one number to be an outlier (look at me using a statistical
term like that and I hated math and really hated stats). The current plan is to stay the course and
keep doing blood work and then after having been on this weenie chemo for a
year they may decrease the dose. A year
would be November of this year, so we will see what happens then, depends on
what the blood work says between now and then.
Now the tech side of the results, her FLC now stands at 5.08, pretty
good results from weenie chemo. As a
side note, technically Velcade is not chemo since chemo goes after all cells in
the body, this therapy is targeted to the icky plasma cells causing the issue
which it is better tolerated.
Her AlkPhos is still elevated (comes from the liver) and
they are not sure why, could be from a couple of reasons. They are not concerned since it is not real
high, just above the ‘normal range’.
She was also having blood pressure problems with some spikes
fairly often. They have put her on a clonidine
patch which has the BP issue mostly under control.
Hematology is still watching her blood counts (make sense,
blood doctors watch blood) because the whole ‘after 2 years out from PTLD the
chances of it coming back are infinitesimally small’ assumes no screwing around
with the immune system. Anti-rejection
meds screw with the immune system so they will continue to watch and be careful
with how much to screw with her immune system, it is a delicate balance between
amyloid, organ rejection and PTLD. They
are not real concerned with this since she even with the addition of Cellcept
she is on a small amount of anti-rejection meds.
My final note is what the transplant cardiologist, who is
NOT known for his sense of humor, said as we were leaving. He said ‘You are a walking experiment’. I am not sure if he thought it was funny but
we laughed a lot at that.
We go back in a few months for another visit to the spa but
for now we wait and see what the future brings, but we will tackle it head on!
As Tigger says, TTFN (Winnie the Pooh reference).
