Yes, this was trip number 50 in 8 years. Wow, this journey started 8 years ago and a
lot has happened in that time.
We went out to dinner Sunday night with Sr. Pat, she really
is an interesting person and we all had a wonderful time. We went to Whiskey Creek and had a good meal
with a lot of good conversation, Sr. Pat has some amazing stories of the things
she has done in her life.
Monday was a typical Mayo visit, test, test and more tests
and then a biopsy. We, well ok just Margaret,
was on the Mayo diet on Monday, first meal of the day at 5:00 PM. I was able to sneak out during her biopsy and
get a quick bite. The one interesting
thing was that there were very few people there, patients wise. We walked into Charlton for blood work at
7:00 AM (we were able to sleep in) and normally the line would have been out
the door at 7:00 AM on Mondays. This time
there was no line, very odd. The rest of
the test all seemed normal as far as wait times until we got to the biopsy, as
soon as we checked in they called her to go back and do the prep stuff for the
biopsy. The whole biopsy experience only
took about 3 hours, very quick for something that normally takes about 5
hours. For Margaret they have to go in
through the groin and the recuperation / “let’s watch her” time is longer than
if they were able to go in through the neck.
She did have a pain in her arm, good thing it wasn’t in her
neck or places lower. They did an
ultrasound which was very cool and it took about 1 hour, the tech and the intern
couldn’t find anything so they brought in the radiologist and he found the ‘thing’. Apparently it is a small mass in the arm
which when pressed pushes up against a nerve causing pain. It is nothing to be concerned about and
should go away on its own. My take on it
is that it is a deep ‘pimple like thing’ that when pushed makes the nerve
cranky. Bottom line, leave it alone and
it should go away, it just concerned us that they called it ‘fat necrosis’ but
that is just the medical term and do not get concerned about the whole necrosis
thing as we did at first. Hmm, fat
death, didn’t know you could do that.
Now on to the visit with transplant.... Most of the ‘stuff’ is normal except she has
a rejection level of 1R. What, you say,
a rejection of 1R, well to be fair they do not have all the detail results in
so we do not know how many of the samples (they take 4) are 1R and even a 1R
does not shake up transplant much.
Actually they told us that they would are happy it it was always a 1R, (0 would be better) and they can live
with a 1R. They are also going to get
more info on what kind of cells were creating the 1R. Apparently there are good cells that can
cause what look like rejection, something called regulatory cells which are
good. We just keep learning more and
more. If they are regulatory cells then
no one cares at all. They were a little
concerned about her EBV counts going up.
EBV is the thing that mutated and turned in to the lymphoma and this is causing
a concern for transplant (more on this later).
On to hematology, her Free Light Chain (FLC) numbers were
cut in half! Yippee!! This is one of the markers for
amyloidosis. As my notes say, the bottom
line, hematology is happy. We then
talked about the EBV counts (known as EBV copies) going up and that transplant
has their undies all bunched up over it.
He really didn’t think it was an issue and was more concerned over the
1R.
This made for an interesting issue, transplant is not
concerned about what they know about, the 1R rejection and is concerned about
the EBV copies which is not their area.
Hematology is not concerned about the EBV copies (their area) but is
concerned over the 1R, which is not there area of expertise. So bottom line is that nobody is concerned
about what they know about but is concerned about others areas of expertise. Apparently this happens in the medical world
just like the ‘real world’.
We did get more info from hematology as a follow up with the
whole EBV copies thing and its relationship with lymphoma. Our amyloid hematologist talked the lymphoma
hematologist and the bottom line is if the lymphoma was going to come back it would
have come back by now. Also her EBV
copies would have to be 2 – 3 times higher than they are now and even then, the
correlation between EBV counts and lymphoma is shaky at best. This all assumes that you have had the
lymphoma already.
That’s all I got for now, thanks for stopping by.
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