Operated on with dirty instruments Duke washed with used hydraulic fluid

[dukehydraulicfluidpatient]

I dont have ovarian cancer but i am having alot of problems. The surgery was 10 months ago and I have severe pain at incision site,ovarian cysts(I had a c-sect and tubiligation)severe fatigue, severe joint pain.Duke Health systems has done nothing. No Drs will treat me for chemical exposure because they are afraid of the almighty Duke. Could this hydraulic fluid be a cancer causing agent. Zinc dialkyldithiophosphate was in the fluid also other heavy metals not to mention the metal shavings from the elevator it came out of. This fluid could be 20 years old. I hope their is someone out there who can help. 3800 patients were exposed to the used hydraulic fluid! No seems to care. My son was also exposed when he was cicumcised. What do I do????

[debpokerqueen]

Huh?

[ted411]

I am confused as well.  Could you back up and describe what you mean by this?

[Christie2004]

There was an incident at Duke where it was found they were washing surgical instruments in hydralic fluid by mistake. I don't know how long this went on before being detected.

I'm guessing there must be some info available through Duke (I'll try to do some poking around) or through malpractice attorneys in the area--they could probably refer you to physicians in the area working with them on potential cases.

[Christie2004]

Do you have further questions about the monitoring program?

Please call our
hotline at
919-286-3232, ext. 223


Long-Term Monitoring
Information on Duke's long-term program to monitor the health of affected patients
As part of our commitment to the continued well-being of our patients, we are establishing a program to monitor the health of patients involved in the hydraulic fluid incident. Many patients have expressed their interest in such a program, yet many others have asked that we do not contact them further. The follow-up was designed to respect patients’ wishes and privacy, and also to address patient concerns.

The program is designed to detect any unusual patterns of symptoms and illnesses among the 3,800 affected patients. While no such patterns have been found to date, we are committed to this monitoring so that we may provide the best possible information to our patients. Duke is currently evaluating groups to manage this follow-up program.

Active participation in the program is voluntary, and all patient information will be kept confidential.

Program overview
The patient health monitoring program is built on an established method used by the United States Food and Drug Administration (FDA) to track potential side effects of drugs. The method involves collecting information from patients, physicians, public reports, and other sources, and then comparing their rates of medical problems (such as complications that arise after surgery, new illnesses, and unusual complaints) to expected rates among the general population.

Such a monitoring method can be enhanced by the active participation of patients and by access to medical records; in this instance Duke will incorporate both to greatly improve the strength of the program.

How will Duke’s program collect information?
Since this program will be established by Duke, internal Duke University Health System (DUHS) medical records may be used in the program to identify new illnesses, post-surgery complications, or unusual complaints. Some patients received care from private-practice physicians following the incident, and their consent is required before those records can be included in the study. Duke is currently evaluating groups that can complete the collection and analysis of these records, while best protecting patient confidentiality.

Sources of information that this program will draw from include:

Patient records from Duke-affiliated office practices
Duke Hospital records
Durham Regional Hospital records
Duke Health Raleigh Hospital records
Medical records submitted by patients
Medical records submitted by non-Duke doctors, but only with patient permission
Calls made to the hotline [phone], ext. 223) if patients provide medical information not already available from the sources above
News reports and other public records if no other source available for that patient
Must I participate?
No, active participation is voluntary. While we encourage patients to participate to help us obtain the most comprehensive data, Duke respects the privacy of patients who have requested that they not be contacted further, and will follow their wishes. Only information available from Duke-affiliated medical records and public reports will be included in the study for these patients.

How can I be sure my information is included?
Any visit to a Duke-affiliated hospital or clinic for medical care since the hydraulic fluid incident, including the original surgery and/or hospitalization, will be automatically included in the monitoring program. De-identified patient information from visits to the medical consultation clinic with Drs. Darcey and Epling will also be included.

Some patients may have received, or plan to receive, care elsewhere for new illnesses or symptoms. These patients will be able to provide information to the Duke monitoring program in three ways:

Patients may send medical records and/or descriptions of their illness or complication directly to the Duke monitoring program.
Patients may provide consent to their personal physician to send the medical record of their illness or complication to the program.
Patients may complete a “Release of Information” form that will allow the Duke follow-up program to obtain a copy of the non-Duke physician or hospital records.
Further information on these options, including “Release of Information” forms and fax and mailing addresses, will be available soon. In the meanwhile, patients who wish to include health information from care outside the Duke University Health System can forward them to Health Monitoring Program, DUMC Box 3230, Durham, NC, 27710.

Will my health information remain confidential?
All patient information will be held in strict confidence in accordance with Duke’s policies and state and federal regulations. This program operates under what is called a ‘peer review protection’ and is confidential. If the program finds any increased risk to our patients’ health, only the overall risk will be communicated--not the results of any individual patient.

When will the results be available?
We will review rates of new illnesses, complications of surgery, and symptoms periodically over the next two years, and compare them to expected rates of those problems in the general population. If the program finds increased risk to our patients’ health, that risk will be communicated immediately. If no increased risk is identified, we will still provide updates on the study at least twice a year to those patients who request updates, and will post updates on this public Web site. Infection surveillance for patients with implanted materials (such as artificial joints) will continue for one year post-surgery; final information on infections will be reviewed this winter.

[Christie2004]

http://www.hydraulicfluidpatients.com/

It took me only about 2 minutes to find all this info.  I encourage you to do a Google search yourself to find more.  There were hundreds of links available.

The ovarian cancer group deals with ovarian cancer.  Good luck to you in your search.

[dukehydraulicfluidpatient]

I am so sorry that I have invaded this PUBLIC forum. And I dont appreciate the condescending nature of the response. I do have problems with my uterus, ovaries, etc. I have searched for about ten months now and Duke's "monitoring" of patients is just that. they will not treat my problems and I am scared to death. I dont have tons of money and some of the other forums cost money so I found this one. I obviously made the wrong choice.

[MickeyVicki]

Well, for what it is worth...I have a friend who operated a surgical tool sterilization unit at a major hospital in the south. (He does not work at Duke, by the way.) When I first heard about this incident at Duke, I asked him what complications could result from this, and he believed that there would be none.  First, he said that hydraulic fluid is relatively toxic, and had anyone received much of a dose of then, then it would have been immediately obvious.

However, it is his belief that there was no exposure.  He described the sterilization units as a combination dishwasher/oven unit.  The operators at Duke added the hydraulic fluid into the cleaning solution container.  Essentially, they were using it as soap.  If I remember this process correctly, then my friend said that the complete process involved the cleansing with soap (which in this unfortunate incident was hydraulic fluid), followed by a rinsing with fresh water, followed by a steam bath, followed by a high temperature drying that basically baked the surgical tools.  He believes the water rinse and steam bath would have washed away any contamination, and  that if the tools had still contained any of the hydraulic fluid then a fire might even have started as hydraulic fluid is flammable.

However, that still does not explain your symptoms.  I would focus on ANY condition, physical or mental, that could be causing your symptoms.  Fear itself can be a powerful and negative influence on one's health, so I would not ignore any option in trying to restore your health and peace of mind.

[ted411]

What information have you found condescending?  I think the previous posting was just trying to give you information about the situation found on the web.  I had never heard of the situation.  This took place at Duke University Hospital in NC?  Of course, I think it's awful.  What reason are staff giving for not wanting to help you?

[Christie2004]

What the???  Condescending?

It CERTAINLY wasn't my intention at all.  Yes, this is a public forum...mainly dealing with ovarian cancer questions.  

I looked up the info because I am from NC and wanted to help.  I just pointed out that it took me all of 2 minutes to find a lot of info for you, and you can do more yourself.  

I think it's terrible what happened, and I see that Duke is tracking victims and their health problems.  I gave you a link to a support group.  And told you that you might find help contacting a malpractice attorney, who typically have physicians they work with who can examine you and see if you have a case.  

Don't worry; I won't bother to chime in again to try to help.  You have an attitude.

[dukehydraulicfluidpatient]

Im sorry but this is very frustrating for me I am on the defensive automatically. Especially when someone suggest getting help from duke. I have searched high and low for ten straight months to find someone that can help me. I am a member of the support group. In the last ten months I and my son have seen numerous doctors.Duke states that they are monitoring these patients but not a single soul has EVER contacted me.Duke is worried about their reputation not these patients. I am aware of all the wonderful things Duke Health systems does. But they have failed these patients miserably. I asked myself the questions too about the fluid catching fire. It has additives that prevent that from happening. The fluid was in the wash systems for two months maybe longer. Duke couldnt get the ingredients from exxon mobile because they told exxon that an employee came in contact with the fluid~they forgot to mention the 3800 patients that were operated on with the tainted tools. I no longer trust duke and I cant find anyone to help me.I know this fluid has affected me! but I dont know where to turn. Right now Im seeing a pain mangement Dr. which helps but put yourself in my shoes. I have searched alot longer than two minutes and cant find anyhelp. I need this stuff out of my body. I dont even know if thsts possible Again Im sorry for having an "attitude" Im just at my wits end

[ted411]

May I suggest looking into alternative medicine to cleanse your body of the toxins?  A wonderful book I have recently read "The Maker's Diet" is very informative about not just dieting, but how to improve your health- including getting rid of toxins.  I don't know your thoughts on alternative methods, but changing my eating and taking whole food supplements has helped me greatly.  The author of the book is also of Christian faith, and seems to genuinely want to help others because of poor health he experienced.  Just a thought.

[MickeyVicki]

Someone is lying to you, or to us.  First, you've been told that the product would not burn as chemicals have been added to the product to prevent burning.  Then you've been told that  Duke cannot get the "ingredients" from ExxonMobile.  Well, if that was the case, then how could anyone know the product contained a retardant (a chemical that would not burn) if no one can get any information?   Anyway, ALL petrochemicals are registered.  Each product has its own registration number, and by looking up the registration number, one can determine the chemicals in the product.  One does not even need to contact ExxonMobile, assuming EM made the product in the first place, in order to get the information.   The information is obtained from a federal registry.  Anyway, it is obvious that Duke has a plan in place to monitor any health problems, and presumably you and your son are on this program.  

And we get right back to the real problem - that you have symptoms and no one has given you a diagnosis for the condition or conditions causing these symptoms.    If you are participating in the Duke monitoring program, and other people have the same set of symptoms, then a pattern will emerge.  However, if you are the one and only, then there is something else wrong.  Why wait and suffer?  Find a doctor who will work to discover  your problems and find a treatment for them, ALL of them.

[NikkiPoo]

Don't wait, find an attorney in the area that will make sure that you will have what you need to take care of yourself & your son should you become sick (or should I say sicker). Best of luck.

[starlit2sky]

May God be with you in your search for a physician and/or lawyer who will assist you.  I have retained gauze in my abdomen from a 1997 surgery.  After being passed around by doctors like a hot potato, I understand how physicians can make a patient feel on the defensive, quizzing me for mental stability/hypochondria.  I gave up hope for symptom relief.  In desperation, my husband just faxed copies of my medical records to Central Ohio doctors' offices, trying to find someone to help.  Last week, I had no doctor.  This week, I have three doctors:  gynecologist, gynecology oncologist and general surgeon.  After eight years, the gauze is now termed "multiple uterine fibroids" and I have a 4 cm. complex cyst on the right ovary.  I have a lump in my left breast.  My CA 125 level is 104.  My surgery is scheduled for October 13, 2005.  I will have a total abdominal hysterectomy with bilateral salpingo-oopherectomy and possible breast biopsy.  My uterus is the size of a 16-week pregnancy, which looks funny on a 5'3" frame.  I have lived in pain for eight years (bleeding, clots, infections and pressure on the bladder, vagina and bowels).  I am 46 and pre-menopausal, so maybe, it won't be ovarian cancer.  I hope I can stick around to finish raising my 3 children.  Please keep looking for someone to help you.  Once, I found a sympathetic nurse practitioner.  Unfortunately, the physician to whom she referred me refused to examine me, saying, "There's no need to poke a skunk."  I have been laughed at and scolded, with one doctor trying to convince me that the chunks and pieces of gauze I was passing was toilet paper.  (The first piece was 18+ inches long!)  Don't give up trying, for your sake and for your son's.  This new oncologist didn't believe me until he took an endometrial biopsy and saw the gauze with his own eyes.  YOU are worth every effort.  Legally speaking, my state has only a one-year statute of limitations following surgical malpractice/negligence.  I hope that your legal window is better.  Prayers for you.

[Organophosphate]

I am the husband of a hydraulic fluid patient, and I feel it is important to chime in on a few facts in this matter.  First of all, my wife’s symptoms from exposure to the fluid began within the first 24 hours of exposure.  Long before the letter arrived saying patients “may have been exposed”.  

Four months later she was hospitalized, and her Doctors begged Duke to tell them what was in the oil.  Duke wouldn’t return their call.

After 7 months of misery, including one near death experience the local paper ran a front page story of the tragedy, and it was later picked up by Good Morning America.

At that point Duke came public and said they had been monitoring these patients all along but saw “no increased rate of infection.”

Since then Duke has asserted that the USED hydraulic fluid was safe, and a person could drink 10 gallons of it without being harmed.  

What DUKE has yet to tell patients, but they have discovered for themselves is the fluid contained at least 6 known carcinogens, and several organophosphates.  These are neuro-toxins that attack the Central Nervous System.  They are fat soluble, and will pass through the blood brain barrier.

As for the debate as to whether or not the oil made it through the cleansing system, Doctors were complaining of slippery instruments for months.  Nurses complained of having to change gloves repeatedly.  Tray pans were stained yellow.  And some patients actually have pathology reports showing “foreign substances” in their tissues.  There is no debate, oil made it into patients bodies.

What to do from here?  Duke has made it clear in their letters to patients that “they are confident no one could be injured from this exposure.”  The patients however are sick, and the doctors are left in the middle to pick up the pieces.  

What patients need are doctors unafraid to stand up to Big Blue, and courageous enough to stand by their Hippocratic oath.  These patients simply want their lives, and livelihoods back.  

Any assumption of Duke treating these patients correctly is sorely misplaced.

[4545oilgirl]

You go!  Four years after I "couldn't ever get ill" I now have Neuro-Behcet's.  My life is made up of doctors, pills and some good days but way too many flares.  My exposure to the oil has not given me the life I thought I would have at my age and it wasn't the "worry" that made me ill, it was the oil.

I hope the lady who asked this question is better and that her issues never turned into my life.  I do believe that you all had been a little hard on someone who maybe very ill.