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We have talked wi\th the FDA, and "tried" to talk to the hospital where she was administered the heparin (several people have said they'd call me back, and don't), we have contacted our congressman.(THE congressman's office is trying to help us, at least, but don't know if the FDA will cite rules refusing to "release' info)  My wife was given a "bolus" of heparin, then an IV of heparin when she was admitted to the hospital with numerous blood clots in her lungs a few days after being released after surgery. She was taken to ICU, given the "bolus" of heparin, (long reason why she couldn't get the injection in her stomach of the other clot busting drug) and an iv of heparin  and immediately got very ill. (worse than the breathing problems). She had stomach pain, chest pain, nausea, diarrhea, heavy sweating,very low Blood Pressure of approx. 60/30, very fast heart rate like range of 165-180. Nobody knew what was happening to her, they "thought" maybe she must have had a blood problem due to the clots then the serious other problems. No one never suspected the heparin, but they immediately took her off of it, then had to give her several units of blood. The doctors said they were "throwing the kitchen sink at her, hoping something would work", hoping she would live. THey did not expect her to live, and told us so. My wife was told that they didn't know if she'd make it. Just looking at her, she looked like she would die .  They finally got her thru this and she stayed in the hospital for 2 weeeks. She was in and out of the hospital for many months due to continuous problems. She is still very bad off. She has lost her short term memory, and some parts of her long term memory. She has exhaustion all the time, can barely take care of herself at all and needs help, can barely walk and has to use a walker or sometimes a wheelchair, has to use oxygen. Personally, I think she got some brain damage due to her very low blood pressure for such a long time. I have read on the internet that low BP can do that. Thankfully we have good health insurance because her medications would cost us over $2000 a month if we didin't have any, she is on a large number of drugs. What about those that didn't have good insurance? She is on a lot of drugs just to keep her alive.
We want answers.
What was the contaminant in the heparin?? How will this affect her in the future?? Is this something that will eventually kill her? How can her doctors help her now, is there something special they should be doing given that it loks like she got this 'bad' heparin? (The hospital won't tell us, they say they will call back with the answer, and then don't return calls. We were told by "someone that should know" that if she did, the hospital and doctor will be worried and won't talk to us).  So it looks like she got it
We dont understand why the FDA is hiding what the contaminent was in this bad heparin? We cannot believe that they haven't figured out what it is yet. They must know by now!!  Ao why won't they tell us? How can their release of what this contaminent is cause problems, this release could only HELP people affected by this. Then the doctors could at least know what they are fighting against, even if nothing can be done!
We have even been tempted to contact the media, letting them in our house for them to report what happened to HER, a person. We haven't seen the media putting a face on these patients that got this bad heparin yet. We trusted our govt., the FDA, the hospital and doctors to give her the best care they could. The FDA failed, and basically didnot care what would happen to patients like her. THe least they could do is to tell us WHAT was in it!!
She survived the surgery (MAJOR surgery), then survived the numerous lung clots, and now we find out that thankfully she survived the bad heparin. A weaker person would have (and apparently have) died.
She wants to go to congress, even if the effort of getting there and back would probably kill her, and SHOW them her life. She wants people FIRED at the FDA for allowing this to happen. THey are saying that it was a "lack of funds" that caused this. This was caused by people letting a "lack of funds" be their excuse, instead of DEMANDING to congress more money and showing them the results of what will happen if they dont' get it. They had people in charge that KNEW their job wasn't being done. We may as well be living in the 1800's, before oversight of drug  manufacturing was done when a person didn't know if they were getting a good drug, or a bottle of snake oil. The FDA may as well be done away with if they aren't going to do their job.  Heck, I want one of those FDA jobs, where I will get paid for NOT doing a job.
How are doctors and hospitals to work and function if they don't know what they are giving is truly a good, clean, uncontaminated or tainted drug or not????

What should we do???????

Last edited by RetMilitaryWyfe (2008-03-09 05:15:07)