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TK's HCM checkup at Tufts...Phil P

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Nomen Nescio - 28 Oct 2006 07:50 GMT
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TK went for his yearly Echo, etc., at Tufts this week.
Some good news, and, as I see it, a disturbing development.
The Good:
TK has turned out to be the one in a thousand cats that has
seen MAJOR reversal in his HCM. Reversal to the point where
it is almost nonexistent.
Mitral regurge.....undetectable in all but his most excited state.
Wall thicknesses......damn near normal
Atrium.......near normal
I don't have the full report, yet, or I'd post the numbers.
But his overall condition is excellent.
Dr Rush said that if this was the first time he'd seen TK, he would
tell me that I could discontinue the (twice a  week) aspirin, but under
the circumstances he was reluctant to suggest changing anything.
So since his kidney values are all good, we're continuing the aspirin
and monitoring kidney function regularly.
Overall, the news couldn't be much better.

Now the disturbing development (and it may keep me from going
back to Tufts):
Dr. Rush and another cardiologist were looking at the echo. Pointing,
running playbacks, and talking VERY quietly among themselves.
This was before I knew the results and it was making me VERY
uptight. As my wife later described it, there was a "feeling of urgency
in the room". Looking back, I would describe it as a "feeling of excitement".
You kinda had to be there, but it was very unnerving for me.
So Dr. Rush told us how well TK was doing......and then:
He wanted to sedate TK to take some readings when he was in
a less excited state (TK was very excited about the whole event.
squirming, bitching, etc.....He was not a happy cat)
I was reluctant to sedate him.
Then came the offer that really disturbed me.
"We'd like to use him in a couple of studies we're doing. We want
to sedate him for some more tests, do some x-rays, and draw some
blood for (someone else) who is doing a genetic study of HCM. If
you consent to this, there will be no charge for today's visit or any
follow-up care" Uh-Oh. .......Houston, we have a problem.
TK has just gone from "patient" to "data point".

While I would like to help in research that might do some good
for other cats, I have several reservations.
a) TK is NOT a good subject for a study. He may live in a
house, but he is not a "housecat". He's still at least 75% wild
and is very distrusting of humans (especially men, which may
say something about his life before we found him). He trusts
me, he trusts my wife, but nobody else.
b) I don't want to subject him to "tests" that he does not need
and that increase his risks (ex. X-rays)
c) "Safe" anesthetics have almost killed me twice. (Do you know
anyone who has been on the edge of cardiac arrest from a drop
of Novocaine in the eye?....You do now!)
d) TK can't give his "consent" for the tests.
e) He may be an important "data point" to Dr Rush, but to me
he's my "buddy".
(This kinda goes back to Philosophy 101. Would you kill one
person if it would cure cancer for all mankind?... What if that person
were someone you loved?)

Anyway, I thought about it for a VERY short time and then declined.
Dr Rush was visibly "displeased" with my decision.I think he thought
I would jump at saving $300 on the day's visit since most of the time
(as my  wife describes it) I "look like I should be standing on the street
corner with a tin cup in my hand". (A bit of advice, guys. You may want
to think twice about marrying a fashion model if you're really fond
of your 10 y.o. jeans)

But anyway, the mood in the room REALLY went downhill from there.
I stood firm. TK was NOT going to be part of their study. I did finally
agree to let them draw a small blood sample for genetic testing.
That turned out to be a big mistake even though it seemed like a fairly
benign proceedure.
An assistant prepared the needle and Dr Rush grabbed TK and held
him in position to draw blood from his jugular. TK struggled, Dr Rush
held him tighter, assistant poked, Tk struggled, assistant poked again.....
Four times and no blood sample. Then TK pulled back, shook his
head, and missed the point of the needle with his eye by what looked
like millimeters. That was enough! So I said "I don't think this is working
very well".
Dr Rush snapped at me: "If your going to say things like that when
TRAINED PROFESSIONALS are doing their job, you'll have to
LEAVE THE ROOM."
"No, were done", I said in as non-belligerent a tone as I could muster.
"He's just too excitable today"
"You want to stop?"......"Yes"
So that was it for the blood draw.
Admittedly, I might have been a little more diplomatic about stopping
things, especially since two students were in the room. But I wanted it
stopped, immediately, and didn't have the time to choose my words
as carefully as I would have liked.
The visit was wrapped up with a level of tension that was so thick
you could cut it with a knife.
Went out to the counter to pay the bill and get the basic report. Written
on the bottom under "follow up visit" we were "advised that TK will
need to be sedated" for the next echo.
Dammit!
If TK continues to do well, I've got a year to decide how to handle
this. But my gut feeling says DON'T take him back to Tufts now that
he is considered an important data point in a research project.

This turned into a longer rant than I intended, but I'm really torn as
to how I should handle this. Obviously, my concern is to get TK
to best care possible for TK.

I see two choices:
Don't go back to Tufts.
(Where do I take him?)
or
Go back to Tufts and make it real clear that I am here for TK's
benefit and I don't give a flying f**k about his research.
(That should go over real big)
mlbriggs - 28 Oct 2006 19:24 GMT
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> =7OJ3
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If he seems to be doing well in a year, why take him back at all?   I
don't remember reading your original posts so I don't have all the facts.
Sometimes you have to go with your gut feelings.  Best wishes.  MLB
Lynne - 29 Oct 2006 04:29 GMT
> I see two choices:
> Don't go back to Tufts.
[quoted text clipped - 3 lines]
> benefit and I don't give a flying f**k about his research.
> (That should go over real big)

I have a child with CCHD who spent most of the first year of his life in
a teaching hospital.  I have had several similar experiences to yours,
most notably an incompetent technician trying to draw blood when he was
very, very tiny (with very tiny veins).  On this particular occasion,
after the 3rd stick, I said "we're done" and that was it for that tech.  
After that experience, I opted to tell the technicians they get one
chance, so they better use their best technician.  It was never a problem
again.

We participated in several studies, but *only* when I felt the potential
for medical advancement outweighed a temporary inconvenience to him (risk
was never acceptable to me).  Given that he owes his life to medical
research, I felt it was the least I could do.

Finally, when either he or I was particualary stressed, I would refuse to
allow students to observe procedures (he has had 5 heart surgeries, all
before the age of 4).

You have all of the above options and should exercise them confidently.  
You are your cat's only advocate, just as I am my son's.  You are also
paying the bills and the doctor is your employee while you are paying for
him.  If Dr. Rush is normally respectful and humane with your cat,
continue to see him *only* after discussing your concerns about your last
visit.  If you are at all inclined to participate in medical research,
decide what you feel is safe for your cat and state clearly to Dr. Rush
what you will and will not allow.  If he is defensive or you don't feel
he will provide good care to your cat, ask him for a referral to another
doctor.  Tell him that you no longer feel comfortable bringing your cat
to him.

I think it's wonderful that TK is doing so well!

Signature

Lynne

meeee - 30 Oct 2006 02:59 GMT
>> I see two choices:
>> Don't go back to Tufts.
[quoted text clipped - 35 lines]
>
> I think it's wonderful that TK is doing so well!

I agree with everything Lynne said, and she said it very well too! Stnad
your ground, and good on you for not letting them bully you into this. I
hate it when professionals let their research overcome their ethics. Yuk. Go
with your gut feeling, and do what's best for TK; demand respect from that
vet as he's obviously not handing out much of it on his own. Best of luck.
Phil P. - 30 Oct 2006 07:20 GMT
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> and monitoring kidney function regularly.
> Overall, the news couldn't be much better.

That's great news!  I'd bet the diltiazem had a lot to do with the reversal.
Diltiazem has reduced hypertrophy and left atrial dimensions in a number of
cats with HCM.

> Now the disturbing development (and it may keep me from going
> back to Tufts):
[quoted text clipped - 16 lines]
> follow-up care" Uh-Oh. .......Houston, we have a problem.
> TK has just gone from "patient" to "data point".

TK is a Maine Coon or MC mix right?  Rush was probably referring to Mark
Kittleson's study at UC Davis.  He was the first to identify the gene
mutation that causes HCM in MCs. He's studying the gene mutation and
inheritability factor in other breeds too, now. They probably want to find
out if TK's reversal has a genetic basis.

> While I would like to help in research that might do some good
> for other cats, I have several reservations.
[quoted text clipped - 67 lines]
> benefit and I don't give a flying f**k about his research.
> (That should go over real big)

When you cool down a bit, give Rush a call and ask him what exactly is
involved in the study and what's the purpose of the study.  If you really
don't like the answers, just say no thank you.  Rush is a very good
cardiologist- I doubt you'll find a better one anywhere near you.  If you
say no, I doubt he'll let your decision affect TK's treatment.

You know TK better than anyone. If you don't think TK could handle it or if
you feel the study would put TK in any jeopardy, then its an absolute no. I
would make it very clear that you do not want any invasive procedures done
or anyone but vets handling him- that means only vets or anesthesiologists
would draw blood- no techs or especially students.  Also, if the study
required more trips to the hospital- I would say no. I wouldn't stress out a
cat that has a heart problem with any more trips than necessary.

Imagine if they found the gene to "turn on" to reverse HCM in cats!- "the TK
gene" - that's something to think about and a hell of legacy for TK.

Thanks for the update- I love to hear good news!

Phil
Nomen Nescio - 02 Nov 2006 08:20 GMT
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From: "Phil P." <phil@maxshouse.com>

>That's great news!  I'd bet the diltiazem had a lot to do with the reversal.
>Diltiazem has reduced hypertrophy and left atrial dimensions in a number of
>cats with HCM.

Diltiazem, weight loss, change in diet, maybe him calming down a little and settling
into the housecat life, and possibly a prayer or two.

I got the report today and there's quite a change in the numbers over a
year and a half.
Most dimensions have moved down into the normal / high normal range.

For those still outside the normal range:
wWTd=1.23   combined IVS and LVS (diastole) thickness moderate-markedly increased (was
1.35 ,extreme)

wWAd=5.71   LV myocardial area moderatly increased (was 6.37 , extreme)

wWTs=1.96   combined IVS and LVS (systole) thickness mild-moderately increased (was
2.04 , moderate)

wIVSd=.62    IVS thickness (diastole) mild-moderately increased (was .69 , markedly
increased)

wIVSs=.97  IVS thickness (systole) mild-moderately increased (was .97 , no change)

everything else has moved down into the high normal range (slightly/mildly increased)

"Minimal left atrial enlargement and no significant mitral regurgitation"
(MR was 3+)

"no SAM" which, I assume, was  the systolic anterior motion of the mitral
valve that was found in the original echo.

There's still some turbulent flow in the LVOT but it's less.

The one thing in the report that I don't really understand is:
" A moderator band was seen in the LV from papillary muscle to IVS."

Any idea what that means?

>TK is a Maine Coon or MC mix right?  Rush was probably referring to Mark
>Kittleson's study at UC Davis.  He was the first to identify the gene
>mutation that causes HCM in MCs. He's studying the gene mutation and
>inheritability factor in other breeds too, now. They probably want to find
>out if TK's reversal has a genetic basis.

He's just a mutt. There may be some MC dna in him since there are a few
MCs around the neighborhood. He bitches like there's some Siamese in him.
He used to have no aversion to water (Burmese?), but now he's too civilized
to tolerate being wet. He still "fishes" in his water dish, though. He has amazing
front paw dexterity. We play a game called "chase the crunchie" where I throw
dry food nuggets across the floor and he chases and "kills" them. Most of the
time he picks the "crunchie" up with his paw and puts it in his mouth. That can't
be too easy to do without an opposable thumb.

It wasn't Kittleson's study that he wanted blood for. I didn't recognize the name.

>When you cool down a bit, give Rush a call and ask him what exactly is
>involved in the study and what's the purpose of the study.  If you really
>don't like the answers, just say no thank you.  Rush is a very good
>cardiologist- I doubt you'll find a better one anywhere near you.  If you
>say no, I doubt he'll let your decision affect TK's treatment.

Dr Rush has been great and I think TK is alive today because we took
him to Tufts. TK is just WAY too wild to let himself be studied. I would like
to help, but not at TK's expense. A few months ago I spent a good half
hour on the phone with one of his assistants, answering questions about
his diet (before and after), weight, behavior, lifestyle, etc. for a study they
are doing. Hell, I'd drive there and spend a day discussing changes we
made, if it would help. But I can't see letting TK get poked and prodded
more that necessary. TK is the antithesis of a "docile housecat".

>Imagine if they found the gene to "turn on" to reverse HCM in cats!- "the TK
>gene" - that's something to think about and a hell of legacy for TK.

Naa......Researchers always name a discovery after themselves.

>Thanks for the update- I love to hear good news!

And thanks for all your help. It's only because of you that I have any
understanding, at all, of what the report means.
-L. - 30 Oct 2006 17:50 GMT
> Now the disturbing development (and it may keep me from going
> back to Tufts):
[quoted text clipped - 16 lines]
> follow-up care" Uh-Oh. .......Houston, we have a problem.
> TK has just gone from "patient" to "data point".

That's not a problem.  You get more data on what is going on in your
cat and they get info which can help cure cats of this disease.  Plus,
their data may be directly applicable to humans.  Sedation, even on a
cat that has HCM, if done corectly, is not a big deal.  I am much more
supportive of this type of research which is done on owned cats that
are loved and well-cared for than the type of research that is done on
caged animals that live their lives with no stimulation and no one to
love them.  You missed a great opportunity to help yourself as well as,
minimally, other cats.

> While I would like to help in research that might do some good
> for other cats, I have several reservations.
[quoted text clipped - 3 lines]
> say something about his life before we found him). He trusts
> me, he trusts my wife, but nobody else.

He won't even remember the sedation.

> b) I don't want to subject him to "tests" that he does not need
> and that increase his risks (ex. X-rays)

???? How do x-rays increase his risks?

> c) "Safe" anesthetics have almost killed me twice. (Do you know
> anyone who has been on the edge of cardiac arrest from a drop
> of Novocaine in the eye?....You do now!)
<eyeball roll>

> d) TK can't give his "consent" for the tests.

he also can't give his consent for being "owned" yet you do own him.
Did you neuter him?  Did you get his consent for that?   You've gone
off the deep end here...

> e) He may be an important "data point" to Dr Rush, but to me
> he's my "buddy".
> (This kinda goes back to Philosophy 101. Would you kill one
> person if it would cure cancer for all mankind?... What if that person
> were someone you loved?)

<plunge...>

> Anyway, I thought about it for a VERY short time and then declined.
> Dr Rush was visibly "displeased" with my decision.I think he thought
[quoted text clipped - 16 lines]
> like millimeters. That was enough! So I said "I don't think this is working
> very well".

S/he should have hit the vein in at least two adjustments of the
needle.  I agree woimever was doing the draw wasn't experienced.

> Dr Rush snapped at me: "If your going to say things like that when
> TRAINED PROFESSIONALS are doing their job, you'll have to
[quoted text clipped - 7 lines]
> stopped, immediately, and didn't have the time to choose my words
> as carefully as I would have liked.

You have every right to stop anyu procedure you want.  The mistake they
made was doing the draw in the room with you.  The cat should have been
taken to the back.

> The visit was wrapped up with a level of tension that was so thick
> you could cut it with a knife.
> Went out to the counter to pay the bill and get the basic report. Written
> on the bottom under "follow up visit" we were "advised that TK will
> need to be sedated" for the next echo.
> Dammit!

Sedation really gives the best results.

> If TK continues to do well, I've got a year to decide how to handle
> this. But my gut feeling says DON'T take him back to Tufts now that
[quoted text clipped - 11 lines]
> benefit and I don't give a flying f**k about his research.
> (That should go over real big)

Well, I hate to tell you but when you aren't part of the research study
you immediately become a second-class citizen.  I experienced it when I
was seeking treatment for my vision loss.  It sucks, but that's a
research Uni for you.

-L.
Roby - 02 Nov 2006 16:34 GMT
My Maine Coon mix developed a loud murmur at age 6 in 2000.  Diltiazem was
the miracle he needed.  He's been on it ever since (4mg qd), with annual
exams and echoes by a board-certified vet (specialty is oncology, actually).
This was the second specialist we visited when the problem first arose.

The first correctly diagnosed HCM, told me that Diltiazem was her treatment
of choice.  She decided to delay treatment until the HCM got worse!  Why?  
Because she would prescribe the human dose (30mg) which she said would
put my cat into a state of perpetual near-sedation.  I found another vet.

I have no training in medicine of any kind and I try very hard not to steer
the treatment of my pets.  But sometimes my conscience causes me to get
involved.  This time, it was the right choice: HCM solved.

My miracle kitty had an intestinal tumor removed in July.  Despite "clean
margins" and the best chemo follow-up, cancer has started up in his lung
and liver.  They say he has two months.  So far he seems quite normal, is
eating well, and a little petting starts up a lot of purr.  I put in a
lot of love and still give him his Diltiazem every morning.  I know we'll
get together at the RB.

Diltiazem and a good vet gave us six more years of happiness.  Do the
right stuff for your friend.  He deserves it.

Roby

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