Heparin Antibodies?

[kerri73]

Hey - this might be a question for Al - But I was told by a cardiologist at our top med center that if on a Heparin Pump or IV for too long, that one could develop antibodies and become susceptible to clots. I was on a Heparin IV when I had my last pacemaker swapped out - for 5 days - and he said that was even too long. I have the following article I found that discusses it also. I don't know if I'm looking for an answer - maybe to see if it's true and/or public knowledge? When I brought it up to my current cardiologist's nurse, she asked him and he just said no (but maybe I didn't ask specifically about antibodies).

http://www.medicalnewstoday.com/medicalnews.php?newsid=34421

Thanks!
Kerri

 

[Guest]

It is a very complicated situation. There are two conditions Heparin Asscoiated Thrombocytopenia (HAT) and Heaprin Induced Thrombocytopenia (HIT). Almost everyone on heparin gets a minor case of HAT which obviously isn't all that bad. HIT is a very serious reaction like an allergy that causes dangerous clotting and swelling. People die from it. One woman that used to come to my clinic went to have her valve replaced and lost a leg and the tip of her tongue to HIT - barely escaped death. One way to cut down the risk seems to be to use Lovenox or Fragmin. Another way to avoid it is to use other drugs that are not directly related to heparin.

 

[kerri73]

Thanks Al - I knew you'd know if anyone did. In a way, it concerns me that my cardiologist blew it off... I know it only affects a percentage of people, but I guess I want to make sure I have the smartest doc out there - available to me, at least.

Thanks again!
Kerri

 

[Jackie]

It is a very complicated situation. There are two conditions Heparin Asscoiated Thrombocytopenia (HAT) and Heaprin Induced Thrombocytopenia (HIT). Almost everyone on heparin gets a minor case of HAT which obviously isn't all that bad. HIT is a very serious reaction like an allergy that causes dangerous clotting and swelling. People die from it. One woman that used to come to my clinic went to have her valve replaced and lost a leg and the tip of her tongue to HIT - barely escaped death. One way to cut down the risk seems to be to use Lovenox or Fragmin. Another way to avoid it is to use other drugs that are not directly related to heparin.

When I had my AVR I was on Hepain ro 3 weeks. One week before surgery and two weeks after. Two days after I came home my right hand was swollen and looked like a rupper glove that had air in it. Could not make a fist. It was so sore that I could not lift it, had to eat left handed. My toes felt swollen and like I had sandpaper between my toes and the balls of my feet hurt. All of these symptoms started after surgery.

Now my hand still swells some, but not as bad. Still can't make a fist. my PCP blames problems with my hand on arthritis. My feet tingle 24-7, it goes up to my knees and keeps me awake at night. It just keeps getting worse. He finally sent me to a Neuroligist after 7 months for my feet. She made blood tests and said all tests were normal. When I asked if she had a clue as to what could be causing this, her response was, maybe it was caused by the blood flow durning the AVR. She put me on Neurotin to see if I could sleep better. Start with one pill and add 1 every four days, up to 9 pills, until it helps. I am on 3 pills every night and it has not helped. I am not sure it is worth it to keep adding up to 9 pills seems like an awful lot to me.

I guess my question is, Do you think this could be Heparin related?

 

[Guest]

I rather doubt that HIT would last so long with causing a disaster. There are antibodies that you could be tested for. A neurologist may not have considered this a possibility and not ordered the test. However the platelets drop to such a low level that I would think that some disastrous event would have happened by now.

 

[gijanet]

Been there, done that!

Been there, done that!

Katie developed HIT (Heparin Induced Thrombocytopenia) after her last two in one very long day heart surgeries. As Al mentioned, they test the blood for antibodies, and there is a 24 hour turn around - or at least there was for us. Since it is extremely rare in children (Leave it to my Katie to always insist on being the exception to the rule......sigh!), they do not routinely test for it when kids are on as many different drugs as Katie was on until they are weaned off many of them. Katie's platelet count had been low since surgery, even with units of platelets and blood transfusions, but she was not tested until almost a week after surgery when the number of meds that she was on was greatly reduced. Her platelet count hovered between 40,000to 60,000. Normal is about 250,000.

We stopped her heparin. Her INR was only at 1.3, so we had to start an alternative drug, called argatroban, which is not FDA approved in children. In fact, we agreed to participate in a study (sponsored by the company, of course) being conducted at several centers across the nation. At that point in time, 10 children had been enrolled. Katie made number 11. (Why do we always have to be one of the first ones out on the ice??? sigh!) Anyway, we had to do something and that was the recommended treatment even if we hadn't wanted to participate in the study.

Fortunately, Katie tolerated the argatroban well, and we were able to DC it a few days later when her INR got within range. For now, we are not to do any more heparin (it was quite a battle just trying to keep the nurses from flushing her lines with heparin in the hospital............sigh!). Hopefully, we will be surgery free for a long, long time and won't have to worry about it, but it is extremely important that we keep her INR in a safe range and not dip too low.

BTW, argatroban is FDA approved in adults and did work well for us, so there are suitable alternatives out there. Hope this helps and our ordeal benefits someone out there. Hugs. J.

 

[Guest]

Katie's experience serves to remind me (as a health-care provider) that everything we know, we learned from people who "lived the experience".

It should also remind everyone that we all benefit from those who have gone before.

Thanks, Katie and Janet.

 

[Nancy]

When Joe developed a brain bleed while on Heparin, they did test him for HIT, probably HAT too. It did not show up.

I do know, though, that he cannot take Lovenox or Fragmin, and now, probably Heparin. He has had major debilitating bleeding on them, even though nothing showed up test-wise.

 

[Lynlw]

Janet as soon as I read this i thought of katie, aren't our kids fun? so what for Christmas? Just's biggie is the ps3 since I'm chatting, Justin is on his way to knoxville tenn for a video shoot, he is working one of the cameras and will be away til wed, Lyn

 

[John & Joann]

Joann had the MAJOR heparin reaction. Never will she have this drug again. We were told by Cleveland Clinic that Lovenix and Heparin would probably be a fatal issue if anyone ever administered the drug again.

Whe had massive amounts of the drug before the reaction.

 

[gijanet]

Al.........

Al.........

I love you! Thank you! Coming from you, that means a lot. You are a gem!

Lyn............I'm stlll envious of Justin.............and how did you swing a PS3? It would be easier/shorter to make list of what Katie DOESN'T want!!!

Love you guys. J.

 

[Lynlw]

I love you! Thank you! Coming from you, that means a lot. You are a gem!

Lyn............I'm stlll envious of Justin.............and how did you swing a PS3? It would be easier/shorter to make list of what Katie DOESN'T want!!!

Love you guys. J.

I found a great site that tracks when some of the hard to find things are stocked in local stores , want it email me.
btw it ended up being he shot the show for a live DVD the band will release http://www.shinedown.com/