Reaction to Heparin "Unusual"

Pasadena, CADeborah's doctor recommended she start taking heparin after she suffered a severe case of post-viral syndrome. "I was really ill then but I am much worse now since I gave myself three weeks of heparin injections," says Deborah, who has become almost completely housebound. Both Deborah and her neurologist believe she had an allergic reaction, but was it due to heparin contamination?

"I already knew how inject myself so that was no problem," she says; the heparin syringes were not an issue. But within a week, she began to have a nasty reaction. "I had some bruising at the injection sites but that was normal; what wasn't normal was a huge swelling in my abdomen, so I called my doctor. He said it was unusual and just told me to go off heparin for a while.

But he insisted that I resume the heparin injections, starting with a low dose and building up to a higher dose over two weeks. It was incredibly painful when I injected it—the swelling got even worse and I told my doctor that I had to stop taking this drug. My waist measurement used to be approximately 27 inches but at the worst of it in August it went up to 42 inches! In addition I have gained a huge amount of weight (most of this is in my abdomen) and since my abdomen is so huge, it affects my breathing. As well, I can barely eat more than a tablespoon of food at a time (in other words it is impossible to overeat.)

As you can imagine, my breathing got so bad with this swelling that I wound up at ER. They could see that I was getting enough oxygen but the swelling was pressing on my diaphragm so it was difficult to get a breath. They did all kinds of tests including a CAT Scan but could see nothing wrong and just recommended I go back to my doctor. I saw my GP and I also went to several other doctors but nobody could figure out what was wrong.

Then I read in the newspaper that Baxter had stopped production of heparin because of allergic reactions (over 300 reported). Next I went online and was shocked to discover how many people may have been given contaminated heparin. I went back to my neurologist and he said I likely did get a reaction from the heparin syringes. He also told me that he never uses heparin in his practice.

I still have the package but don't know if the batch numbers match the recall—if it was part of the tainted heparin. I heard a news program describe a woman with similar symptoms so I contacted the news agency and they gave me the name of a watchdog group in Michigan; I just wrote them asking if anybody knows what to do, if there is a cure for this.

If you can imagine your abdomen grow from 27 to 42 inches and gradually over a year dissipating somewhat you can understand how hard it is for me to walk around; how difficult it is to eat and sleep and I am not able to enjoy daily living; I was disabled before this but I was able to get out and see my friends and enjoy gardening. I had a limited life but now my quality of life is mostly bed-bound and it's not fun.

Baxter, the manufacturer of heparin, needs to come clean—this isn't right. I don't even know if I will ever recover."