Coumadin necrosis

[Marge]

I never heard of "coumadin necrosis" before this week, when I was referred for possible valve surgery. Because my mom was on coumadin for pulmonary embolism for years, I thought I knew all about coumadin & could handle it if I had the surgery.
Maybe not!!!!
Here's the deal: I was born with a congenital defect called an arterio-venous fistula in my left arm (it's an abnormal channel between an artery & a vein). I had two heavy-duty surgeries as a little kid to correct this. In my 20's the problem reappeared. I had been in a car accident in which I banged my arm hard against the dash or steering wheel or something. An AV fistula can be either congenital like my original one, or it can be the result of an injury--nobody knows whether the second one was a reappearance of the old defect, a result of the accident, or a combination of both.
Anyway, bottom line: blood started clotting badly in arm. Was in hospital for two weeks undergoing heparin therapy. Didn't work. Clotting continued. Gangrene developed. Excruciating pain. Whole thing was pretty awful.
Finally was sent to see Dr. Edwin Wylie, star vascular surgeon at University of California at San Francisco (top guy, dead now, but still revered as pioneer in vascular surgery). He said: "I'm really so sorry, but gangrene too far gone, must amputate the arm."
So they did.
I've lived quite well for 30 years without a left arm. (Really thought I had paid my dues in terms of major surgery--now this heart thing comes along!)
Having read about this "coumadin necrosis," it suddenly occurred to me: could the gangrene have been due to the HEPARIN???? Arrrrghhhhh!
And if so, am I at risk for a recurrence if I am on coumadin? If it is a major risk, I don't know if valve surgery is a possibility. (I have no desire to ever risk gangrene again. If you have never had it, be happy. It is incredibly painful.)
I guess I will have to tell the CV surgeon about this background.
Are there tests they do ahead of time to see if you can tolerate coumadin?

 

[LUVMyBirman]

Hi Marge,

Welcome. 'Wowed' me with your story. I am sure you will never get such admittance from a Doctor regarding the gangrene. Sure seems like a possibility.

Highly recommend you consult with a hematologist prior to making a valve decision. They can run a panel of blood tests to rule out disorders that may interfere.

If you can get them to try the Coumadin on you beforehand, even better.

Your asking all the right questions and moving in the proper direction. Keep up the good work.

All the best to you.

 

[MelissaM]

Hi Marge,

Thanks for sharing your story.

Really thought I had paid my dues in terms of major surgery--now this heart thing comes along!

There are probably more than a few on this board who feel this way. Jeez, we've had some doozies! I very much felt that way. About ten years ago, I had a two year period where bam, bam, bam, my mother, grandmother and grandfather died, then I came down with some sort of mysterious bug out on the Navajo Rez that had me trached to put in an airway then flown to Albuquerque for a week in the hospital. There were a bunch of other little stupid things (like getting audited by the IRS ) that seemed to compound the whole two years.

After that time I SWORE the piper had been paid and NO MORE BAD LUCK would come my way. Enter. . .bacterial endocarditis. This past two years I went from healthy, normal person to sickly woman awaiting heart surgery. As a result of my illness and concomitant surgery, I lost the place where I was living, lost my business, and lost my relationship. Its pretty much sucked.

The good news is that the Good Lord has equipped me with a decent sense of humor and a positive outlook, which seems to soften the blow of times like these, but they are still hard!

Anyway, I am rambling now, but hang in there! You may have had more than your fair share of hardship, but you can get through this most recent one. Especially with a little help from your VR.com friends!

Melissa

 

[Marge]

Gina, I didn't mean I wanted to get any doctor to "admit" the heparin caused the gangrene!
I am sure my doctors did everything possible for me at the time. I had wonderful doctors back during that whole horrible episode--my vascular surgeon in particular was an absolute peach of a guy, aside from saving my life.
The heparin connection may just be a wild idea--it just suddenly occurred to me I'd better make sure that possibility was eliminated before embarking on blood thinning therapy again.
It hadn't even occurred to me that it was something that might be a concern, until I started reading this site & learned more about coumadin.
-------
Melissa, I've also got a feeling that this year is not my year! In order of descending importance, since June 2003 my mom died, my dog died, my computer had a hard crash & lost a lot of my really important stuff. And in October I was diagnosed with CHF/DCM and a leaky mitral valve. My husband is awaiting knee replacement surgery.
I do think that if I had an IRS audit on top of everything else, that would send me straight to the psych ward.

 

[Guest]

Marge,

There are two things in particular that you should look for before you have your heart surgery. I feel very strongly that you should be tested for these. You need a good hematologist and will have to insist that your insurance company authorize these tests.

The first is Heparin-Induced Thrombocytopenia. This was not recognized as a disease until the past ten years, but it sounds very close to what you are describing. One of my patients just went home yesterday from having this. He narrowly escaped amputation. His arm swelled to the point of the skin splitting open and he bled. This is a potentially fatal complication of heparin. It will be very difficult for you to have the surgery without heparin, but what use is the surgery if you are killed by it?

Heparin does not cause warfarin-induced skin necrosis because it does not work on the Protein C system as warfarin does. Protein C is a natural anticoagulant. It keeps the blood from clotting when it needs to be flowing in our bodies. One of the odd things about warfarin is that is depresses the activity of this natural anticoagulant before it starts to work on its own. This is especially true when loading doses of 15 mg or more of warfarin are given on the first days of therapy. When this happens, clots form in the skin (usually fatty areas - quite often the breast) and can cause that skin to necrose (die) and amputation results. I have only seen one case of this. The test you need is the one for Protein C deficiency. This cannot be run while someone is on warfarin because it will be falsely low.

I want to emphasize that these are rare conditions, but you have a rare history.

If you have not already done so, please look at my website www.warfarinfo.com

 

[Kathy]

Marge,

I have to add my name to the list of persons with a long list of medical problems and emotional losses.

My mom died when I was 18. I remember that I cried one night because she had been through so many surgeries and hospitalizations. She had pneumonia prior to penicillan and was hospitalized for an entire year as a child, juvenille diabetes, and finally ovarian cancer. She had numerous other problems which were complicated by the diabetes.

After surgery I was thinking one day about my many surgeries and goofy illnesses. I was feeling awfully sorry for myself. Then I realized I was following in Mom's footsteps. One big difference...I am ALIVE at 52.

People have told me that I will be so much deeper for all my experiences. Personally, I think I'm deep enough. I wouldn't mind being a shallow person.

I am being somewhat facetious about wishing to be shallow. I have learned many spiritual lessons during this last medical bout. I continue to learn lessons from the great people at VR.com!

 

[Karlynn]

People have told me that I will be so much deeper for all my experiences. Personally, I think I'm deep enough. I wouldn't mind being a shallow person.

I've said the exact same thing!

A comment that drove me nuts was "God must be putting you through this for some reason."

I wanted to tackle the person, sit on their chest and say - "You're telling me that God doesn't want me to be a good wife and mother. That God wants me to feel lousy all the time, and wants my children to have a mother that does nothing but lay around on the couch?"

What I prefer is "God works all things for good..."
The times were tough, the lessons not so pleasant, but I will say that I do feel richer for the experience. I will never take life for granted.

Karlynn

 

[Marge]

Al, I am so grateful for your reply--actually of course for all the replies.
You can't imagine how much I hesitated before posting about all those old experiences, the gangrene, the amputation, etc.
I don't like even thinking about that period of my life.
Now I am sure glad I did post because I would never have learned about someting as esoteric as Heparin Thrombocytopenia! Wow.
I will make sure I do all the things you suggest.
However, I still think that, although I need to investigate it, heparin is PROBABLY not the reason for why my arm got so bad it had to be amputated. I really do think the reason was that the arterio-venous fistula had gotten so bad, the blood vessels were so entwined that the blood just wasn't circulating at all, and the heparin wasn't hurting, it just wasn't able to help.
I was in such pain and confusion that I missed a lot that was going on then, but I do remember dear Dr. Wylie, my vascular surgeon, saying something about why he had to take off a big chunk of the shoulder as well as the arm. Something, IIRC, about the extreme complexity of my circulatory system in that arm and shoulder. Because of that, it was very complex surgery, lasting a long time, not just your basic chop-the-arm-off sort of thing like in the Civil War movies or Master & Commander.
I know that I am lucky to be alive, which does NOT, btw, make me a better, deeper, more spiritual, or nicer person.
Al, I'm curious about the Protein C deficiency test.
Are such tests not automatically run before valve surgery (since they know that you will have to be on blood thinners afterwards)?
Or do they just assume that people will be able to tolerate coumadin? It sounds like a big assumption. Once you've had the surgery, there's no way to go back, & what do they do then if you can't take coumadin.
[Off to Al's website!!!]
It would be truly ironic, after all this work, if the CV guy says next week, No, my dear, you are really not a candidate for this surgery anyway.

 

[Guest]

The protein C thing is rare so the yield on the test is low. That is why they do not run it on everyone.

I'm not even sure how they could test for HIT but I think it should be considered. You do not want the last thing you hear to be the surgeon saying, "Oops".

Your most fervent wish should be that nobody ever use the term "interesting case" in conjunction with your name.

 

[MelissaM]

I know that I am lucky to be alive, which does NOT, btw, make me a better, deeper, more spiritual, or nicer person.

lol. We all have our moments, huh? I came out of the first big life experience with a sense of having grown and changed. . .perhaps grown richer.

The second time around I just thought, "Jeez, who put me in the "unlucky life line". . .and how do I get out of it?"

 

[Marge]

<< Your most fervent wish should be that nobody ever use the term "interesting case" in conjunction with your name. >>
It is way too late to hope that, Al.
To reconstruct my medical history, I recently re-read the copies of the old letters exchanged between various doctors prior and after my childhood surgeries. (Copies had been sent to my dad & I found them in his files after he died.) "Thank you for referring this INTERESTING CASE to me" is the recurring theme.
I am really at a loss--I will certainly raise the question with the surgeons, but, if they can't test for HIT, what does it mean (from a practical POV) to say it should be "considered"?
Is there ever any alternative to using heparin in connection with valve surgery?
<on edit>
P.S. It occurred to me after I posted this that maybe it is not always true that <<You do not want the last thing you hear to be the surgeon saying, "Oops".>> As long as I go knowing and accepting the risks.
Perhaps it is better to risk the chance of an "oops" for the chance of a much improved heart, than to sit around tethered to the cardiology department, monitoring my CHF meds and waiting as the old pump pumps slower and slower and slower ....
I don't know. I just hope & pray that I have the opportunity to make the choice.

 

[Guest]

Re; HIT testing

I'm far from being a hematologist. It just struck me that this might be a possibility, since I had seen the other case just the day before. When you answered the post, it suddenly occurred to me that I had made it sound as if there was a simple one-drop blood test that would prove yes-or-no whether you had HIT or not. The more I thought about it, the less sure I was that there is such a test. I work almost exclusively with warfarin and there is almost as much to know about the nuances of heparin, so I don't claim to be up-to-date on that field.

An expert is someone who knows more and more about less and less. This is rapidly becoming true, at least in my case.

 

[Marge]

I googled "Heparin-induced Thrombocytopenia" last night and got a lot of sites.
Heparin is so commonly used in hospitals in the US these days in connection with so many different procedures, that HIT is a pretty well known issue now.
I still can't tell from the literature whether there's actually a test for it ahead of time, but there are certainly ways to be alert for it afterwards, and there also appear to be anti-HIT therapies and even alternatives to heparin. I can't tell whether they are sufficiently effective to be used in the case of valve surgery.
However--I think any heart surgeon worth his salt should immediately sit up & take notice as soon as I recount my past history, and refer me to a hematologist prior to any decisions about surgery.
Thank you once again, Al, for alerting me to this "interesting condition." LOL.
Marge