For all on coumandin

[RCB]

Everyone who has had to watch their diet, medication, etc.,there
is a new drug on horizon which might make make those protime
sticks, history. It is called Ximelagatran. Read about it at:
www.warfarinfo.com. May be in use by early 2004

 

[Nancy]

Hi RCB-

One of our members Al Lodwick runs that website. It's a wonderul resource! And he's a great guy. He pops in here from time to time.

 

[Guest]

RCB have you been on warfarin for 43 years?

Let us know some of your experiences. That would mean that you were on it for about 30 years before they learned how to manage it very well. Is there a difference between then and now in bleeding episodes etc?

 

[RCB]

Get ready for a shock, AL

Get ready for a shock, AL

Hi AL,
I will try to do my best to answer, please remember I was only 11 years old, so everything is through the eyes of a child.
I do remember the testing of blood. About three times a day,
the floor nurse would come in a stick my finger and then draw the blood up in a 5 inch long capillary tube. Then she kep rotating
it 180 degrees to keep the blood moving back and forth in the
tube, timing it till it stopped moving(clotted)- the orginal protime.
I was in the hospital for six weeks so you can imagine what my
fingers looked like. My mother use to say they looked like pin cushions.
Now here is the real shocker. The protocol for post-op was to
go home and monitor it by checking your urine. If it with red or brown cut back a little. After a few months you were taken off
the coumadin. It was a time of many strokes. I had a TIA in
1967, then they put me on the drug. then in 1977, I misunderstood
my card. and went off coumadin and just on aspirin. In 1981,
I had stroke that left me a right hemi-plegic. When they took
cat scan, they said I had been having several mini-strokes, before
I had the big one. In 1982, I had AVR and Starr-Edwards ball(that had put in, in 1964 to replace my orginal AVR) had
cracked and was throwing off clots.
Today, I take coumadin religiously!
Hope that answers your question.
Take care,
RCB

 

[Guest]

RCB

What a wonderful piece of history.

No wonder that people today still think in terms of horror stories when they hear Coumadin.

Would you give permission for me to put this on my website. I'll use your real name if you would not mind. I'd also like to put send it to members of our professional organization if it is OK. Maybe even send it as a letter to the editor of a medical journal.

Let me know.

 

[RCB]

Thinking about it

Thinking about it

Al,
I would like to think about your request a little longer.
I'm kind of shy about those sort of things. Actually, I was hoping
that other pts. of Dr. Kaye's might be on this website and we
could go over "old times at St. Vs". There must be some that are
still alive. I'm sure their memory would be better then mine.
While I have your attention, does your clinic have a recommnedation for the use of psyllium/methycellulose?
I had an attack of diverticulitis last year(all those years of being
on Norpace) and was advised to use it with out any suggestion
of how it would affect my protime. My card. was upset about my
suddent increase in dosage. My wife(who is doing research in
this area) found some articles that said it would lower INRs.
With more and more pts. on coumadin approching that age when
this product is necessary-why isn't the side effect more commonly known? Just curious.
I'll let you know about the history thing.
Take care,

 

[Guest]

RCB, It is OK if you do not use your name. However, I would like to make this interesting anecdote available to others. Warfarin was so difficult to manage in those days that they evidently thought that people would be better off without it - after a short period after surgery. But as your experience attests, the valves threw off clots and caused striokes. You are truly one of the pioneers that the medical community learned from. I'm sure that this is how the doctors came to know that warfarin had to be continued life-long and that better management had to be developed.

HOW WOULD YOU GUYS LIKE TO MANAGE WARFARIN TODAY BY WATCHING FOR BLOOD IN YOUR URINE AND THEN CUTTING THE DOSE BACK SOME MYSTERIOUS AMOUNT UNTIL YOU THOUGHT THAT YOU MIGHT BE GOING TO HAVE A STROKE? RCB lived it!!!

I think that you are about 9 or 10 years the senior of the next person (in terms of when you had your valve implanted) on this site. I have monitored 90-some people and have seen only two who go back into the 1970s. One of these people had a letter from his doctor (written about 1990) - the doctor was one of the pioneers of heart surgery - that stated that the doctor was amazed that the valve had lasted all that time. Evidently they thought back then that all they were doing was to try to buy the patient a little time until a breakthrough came along.


You raise a very good point about the fiber laxative. One of my valve patients had been getting along quite nicely for several months when her INR went up to about 5 last week. The only thing that she could thing of was that she had run out of Fiber-con and just had not gone to the store to buy more. We looked back to when she started Fiber-con which she said was about the first of this year. Sure enough, at that time her INR had dropped and we increased her warfarin dose. So she went to the store and purchased another bottle of Fiber-con last week. I left her warfarin dose the same. Guess what, this week it was right back to where it had been before she ran out of Fiber-con.

So with an increase in warfarin coinciding with starting Fiber-con, and increased INR coinciding with running out of Fiber-con and the INR dropping back to the desired range when she restarted Fiber-con with no decrease in warfarin dose, we have reasonable proof that fiber interferes with warfarin.

I have also noticed this when patients are taking things like Fibersource and other supplements in the hospital. but never had proof before.

 

[RCB]

I've been think.....

I've been think.....

Al,
I guess it will be alright to use my comments. My concerns
are some "crazy" might do something. Just paranoid and
don't have the energy to deal with the hassle. Everyone here
seems nice, so quote away!
By the way what was the name of that "pioneer doctor"
you mentioned in your post.
You could do me a favor. I'm kind of ignorant about this method of testing blood that a lot of people talks about and
just assumes everyone knows. Could you point me to where
exactly on your website you talk about finger stick vs arm blood
draw- pros and cons.
Take care,

 

[Guest]

If you prefer, I'll just use your initials. Thanks.

Up at the top of this page there is a button that says, "Members". If you click on that, my name is on the first page. When you click on my name, there is a part that says, send a private message. This send an e-mail only to that person. Lots of the members use that when they don't want something posted for everyone to read.

The doctor was Michael DeBakey. He is still pacticing. I think that he is in his 90s.

The method the people are writing about is a finger-stick. The INR is done with one drop of blood. The results are available in less than 2 minutes. To find out about a clinic in your area, click on www.acforum.org and look at clinic locations. If you are interested in purchasing one, send an e-mail to [email protected] and ask for info, or look at www.hometestmed.com

Thanks again.

 

[Guest]

Sorry that I have taken so long to send something else to this thread.

Look at http://texasheartinstitute.com/starr.html

This is an excellent history of valves, especially the Starr-Edwards valve.

If I am reading this correctly, nobody who had a mechanical valve inserted prior to September 1960 lived more than three months.
RCB had his on October 31, 1960 and is still alive.

 

[ccrawford]

Al - FYI, my brother-in-law had a Starr Edwards installed at Mayo and I think the year was 1972-I have it written down somewhere. He has done very well with it until recently. Apparently there is a leak, and he has some other valve problems so will be facing repeat surgery in the near future. Back then, they did a horizontal incision that went part way around the back. Don't think I'd like to be one of the pioneers' guinia pigs !
Chris

 

[RCB]

Texas Heart Ins. article

Texas Heart Ins. article

Al,
My wife gets the THI journal and she alerted me to the article.
In fact I exchanged letters with the author. Harkin also had some early patients, but she thought they were older adults
who would have passed away by now. If you read the article
closely, you will note that the first patients of Dr. Starr's were
mitral valve replacements. My AVR was by Dr. Earl B. Kay( see
footnote 21) and probably the first successful one(live more then 3 months). I didn't not receive a Starr/edwards, but one of
Dr. Kay's own design, that lasted long enough for me to get a Strarr/edwards in 1964 that last till 1982.
Hence my claim:

 

[Guest]

Thanks for the clarifiaction. I got interrupted several times while reading it.

I used to see a man who had one of Dr. DeBakey's original valves. He showed me a letter from Dr. D several years ago that said that he was amazed that the valve had lasted so long.

Everybody else on this site owes their life (at least in part) to what was learned from RCB's experience. He is every bit as much a pioneer as anybody that settled the west etc.

 

[Marty]

Ball in a cage valve

Ball in a cage valve

I love this history! Our own Dr. Charley Hufnagel at Georgetown
first used his ball and cage valve in 1952. He used it to treat aortic regurgitation and placed it in the descending thoracic aorta.
Over 20% of patients died during surgery or shortly thereafter
but those that made it were greatly benefited. I hailed a cab one night in 1955 and heard this click click all the way in the back seat.
I asked the driver if he was a patient of Dr. Hufnagels and he said he sure was, two years post op, and doing fine. I didn't think
that in 1998 I would get a mechanical valve myself! My St Jude is now so quiet no one can hear it except me sometimes in the middle of the night.

 

[Nancy]

Now, now Marty-

Don't you go making fun of the cage and ball, Joe still has one, a Bjork-Shiley. It is pretty noisy and chops up his blood quite well, hemolysis.

Joe would probably tell you he has a cage and ball, and a ball and chain.

 

[Granbonny]

Dr. Debakey

Dr. Debakey

I spent every summer. age 15, 16, 17 18 with My aunt in Galveston, Texas. I remember being introduced to him ..once, when we were at my Aunt's Bayfront..weekend home. She said this is the famous. Dr. Debakey..I said. O.K.? Can you imagine? a teenager .that he would help out ..almost 50 years later? Glad to hear he is still alive. bonnie

 

[Guest]

Dr. Debakey is not only still alive, he is still treating patients. I saw him on a TV special a few years ago. He was in his 90s and was making rounds in Houston after just getting off a plane from Moscow. Not the one in Idaho -- Russia. Now who has complained of jet lag while in their 30s???

 

[Marty]

Superman?

Superman?

Mike Debakey is a superman. I met him at Walter Reed in the mid 50's. He did a heart operation in our OR miked up and on TV, primitive color, but good enough. The operation was intricate but we could hear Mike talk and breathe ,oh so calm, with blood spurting everywhere-no bypass or cross clamp yet. My surgeon Ed Lefrak trained 7 years with Mike in Houston and then came with us to be the first heart surgeon in Fairfax.
Nancy, glad to hear that ball cage is still working for Joe. I think thats wonderful!

 

[RCB]

Lucky man - Marty

Lucky man - Marty

To have met both Hufnagel and DeBakey makes you very
fortunate. My own surgeon was in touch with Dr. D. as they were both trying to fine tune the heart-lung machine. I remember they
made changes to machine all the time to improve pt. chances
of making it through the long operation. I was on the machine
for 9 hours both times. It also took 35 blood donors who had
to be bused to Cleveland the day of my surgery. How things have
changed!

 

[Karlynn]

Maybe if it was a snake

Maybe if it was a snake

...it would have bit me. I'm not able to find the article on Ximelagatran on Al's site that RCB refered us to. Maybe I'm blind, or maybe it's just too late at night, but could someone direct me to in on www.warfarinfo.com ?

Thanks,
Karlynn

PS - It has been so nice reading a part of history that has enabled me to live such a full life with an artificial valve.