FIGHTING BACK

I do know that I had an inner voice telling me to look further, and know caring, competent physicians whom I've trusted for a long time. Now that I have been diagnosed, and gone through chemo and had a marvelously competent, honest oncologist, I am grateful for my own insight gleaned from the experiences I've had in life, and my friends.  All this goes into having the courage to question - but 'courage' can sometimes be fear, too.
 

 

I was busy trying to extend my life, then recover from surgery after surgery, then, follow through on consultations when the metastasis was discovered. Intermingled with all of that, I had to stay focused on the step I was on, and center myself in order to keep my sanity and not give up. The gaps did not go unnoticed, no, not at all.

Throughout this time, I faced serious disappointment, and betrayal by a system I depended upon, and individuals.  I felt a circling of the wagons from some and it really put me to the test. My experience has certainly changed my life, and I realize that my prior commitment to honesty and the self-worth of everyone must forever stay a part of me and I had to forgive.  In case, I have to take this experience to my grave, I know that I must forgive them, and myself!

That does not mean permitting people who appear to make errors to continue without questioning, fact-finding, and/or discipline. Thus, I now needed a new type of courage, and I didn't think I that part of my personal growth to carry it out.

Then, I would think of my daughters, loved ones, and friends, and I knew I had no choice but to try to be strong enough to do something, if I could.

During my worst moments the thought arose: had she (the radiologist in 1997) only found it earlier, when I was telling her my brother and sister died of cancer as kids, and my breast hurt, "Why didn't she just go look again - or have a colleague give an opinion?

I asked the first surgeon, the director of a supposedly well respected academic center, "Are those' cells anywhere else right now?"  Then, when I found out they were: Why didn’t she just perform according to the Van Nuys Index, take some of my nodes as we'd planned together, in advance?  Why did I have to go through extensive breast surgery twice, then, again?

I tell myself losing two breasts don't matter, but it does - but not in comparison to being alive, and having a life to fight for!  But, I would not have had to go through the treatments I have, had this been reported by the first radiologist who missed it on my mammogram.  A mammogram I was doing my job by having it. . . taking care of my own health care!

**When another radiologist was questioned about my 1997 mammogram, I was told that his reply was, "I would have biopsied her immediately."

I remember the night the anger hit. It shocked me. After a complication of the chemo, I found myself on the bathroom floor, in terrible pain.  Alone in the house, fearful, it dawned on me that this could have all been prevented!  I experienced a crying I've never known. . . loss? Yes. Lots of loss! Loss of confidence in people I trusted with my life. And, terrible pain, that I begged for help with - in an empty house.  My prayers could be heard for blocks, I'm sure! I don't think that I am the only one this is happening to.

What could have made it better? To have had my mammogram re-read and been called and told, "Get in here quick - we've found something, and together, we're going to take care of this, and you - but, we need you to be here (that did happen eventually, thank God for the radiologist)." Or even, "The surgery didn't go well, you had a reaction, and we needed to hurry to wake you up," or whatever the reason for not doing what they were going to do. Or just, "Breathing problems? Let us take a look!" It would also have helped to know that my mammogram was being read by a competent radiologist. Family history of all siblings young deaths from cancer meant I needed help to continue my health awareness. I didn't get it.
 

Things keep going through my mind: if an R.N. had done any of the things that were done to me, or "missed" things, s/he would be brought before nursing service, minimally, and soundly devalued. Other R.N.s would have reported it, as well. If it were a nursing student, I shutter to think of the results. . . but it would be warranted. And, attorneys are suspended for not returning their clients telephone calls!   And, the added work this placed on my current surgeon, oncologist, pathologists, radiologists, insurance companies, and the US Government . . . they have borne the brunt of a lot of this, too, and everyday, practice carefully, to stay out of trouble also.

I pray God they always consider substance over form, life over money - and that I'm not trusting, too much, again.  There is no way to  measure what this has done to my life, my children's lives, and my friends lives.  The cost of travel, losing work time, months of lost income (now on leave without pay,) and their time and expense - plus the worry - terrible worry.

I am going to record here what I am doing to fight back as a healthcare consumer.

That is all I know how to do. I do know a bit more about medical education than the average person I guess, so maybe I can help you.
 

Starting. . .

This website is a start and one factor cannot be ignored. It is all due to the fortitude and encouragement of Joan Grant Dunsmore (a high school. classmate in Michigan), and Dr. Dean & Sherry Hendrickson (Austin), and now those of you are sending this web site to your E-Mail lists, who have E-Mailed back, or sent your comments through others.

You are fighting back by helping to build this site (especially Joan who so patiently bore with me and urged me on to keep recording when at times I could not hold my head up during chemo or pain, or even think.   

I had to think and pray about this, away from others. It was not something I ever wanted to do. I spent about 2 weeks talking to very few people. . . maybe 3 weeks.

I just had to think, and pray, and be sure I could trust again.  I've been so blessed with my doctors and Seton Hospital, now, I didn't want to disrupt that gift!

I've seen too many physicians work hard, and carefully, and in the best of their intentions, in a crisis, make an error - we all could. There are too many physician friends whom I know work slowly and methodically to avoid making errors - and limit their potential income.

I kept thinking, and praying, and took others observation of the occurrences into consideration.  Granted, my early care was not a good sight for anyone to see, or experience.

For a good length of time, I spent my entire time on coping with chemo, and staying away from negative inputs about the competence of the medical profession - because I don't believe that generalization. I do believe that like any other group, there are those who lose themselves, placing form over substance (money over ethical practice) and they need to be stopped.  But, they are also, men, women, husbands, fathers, mothers, wives, siblings, human beings.

 
My decision:  Report the situations to the medical regulatory agencies, including the State's licensing board.  See what happens 'internally.'

Locate a law firm that would sanely discuss the possibilities of a lawsuit, carefully review the happenings before hand, and be cognizant of my respect for my current team who go above and beyond the call of duty, all the time. Impossible? I don't think so.

Realism must be faced however.  In the state of Texas, a plaintiff has very little hope of a successful lawsuit.  So, these practices may go on and on.  Today, in Texas, the State Supreme Court is stacked against the plaintiff.  But, please remember, were my traumas caused by someone 'on the street,' I'd be eligible for Crime Victims Assistance!
 

CHRONOLOGY OF ACTIONS:

11/14/98: Formal complaints filed with the State Board of Medical Examiners on the individual physicians. I telephoned them, and they sent me the forms.

11/24/98: State Board responded that an investigation has been initiated on each complaint to "determine whether a violation of the Medical Practice Act has occurred."

I will be informed every 90 days. In the state of Texas, I filed in, **"approximately 83% of investigative cases are closed by the Board committee. . . with the finding of Lack of Evidence." And, "Approximately 40% of the cases heard in *ISC/Show Compliance Hearings are similarly closed by this committee at the recommendation of the representatives." *informal settlement conference, they state.

12/15/98: State Board investigator mailed me forms to sign to give them full release of all of my medical records, to proceed with the investigations.

I am checking, now, with my own attorney.  He wants the forms sent to him before I sign anything.  These will be mailed to him, tomorrow.

1/99: Holidays, diagnostic mammograms, and another surgery scheduled.

The ABMS told me to write to the American Board of Radiology, and gave me the address. So, finally, on the advice of the American Board of Medical Specialties, I have gotten around to writing to the American Board of Radiology regarding the errors in my mammograms (they don't care about their board-certified practitioners actions, the president told me, in a letter this month).

1/26/98:  The president of above informed me by mail that they do not police their members, but he did hope I would be well soon (nice of him).  My 2nd mastectomy is in two days - would he like to trade places with me?

The State Board of Medical Examiners was sent my signed releases by certified mail earlier this month.

2/99: The State Board examiner is currently investigating my complaints.

I did speak to the President of a local radiological group that missed my malignancy (until another of their radiologist's I'd requested found it).  He  told me that they "lose money on mammograms," and he also quoted me the debt load they carry from patients not paying them.  This conversation came about because I had been threatened of a lawsuit by their "collection people" for a $7.50, and $10.00 charge that I had no idea what it was for (the procedures were done at a location with a different name) and certainly did not want their firm to do any more of my radiological work.  I did tell him that his 'problems' were not the patients problems, and perhaps they might think of ways to better serve the public, more competently, because I've heard many patients tell of errors made by this particular radiological group.  I did wish for a lawsuit so I could get into court and tell and show evidence of the errors they had made on several of my x-rays, not just a mammogram.

More to come, as I hear

As of 4/1 I have not had any further response.

4/17/98:  Letter received from the Texas State Board of Medical Examiners re: blank blank, M.D. (who missed my malignancy on my 1997 mammogram), "because the evidence does not indicate a violation of the Texas Medical Practice Act." However, it states that "A record of this investigation will become a historical part of our files."

Pray God, other women check this physician's file before they use her as their radiologist, to read their mammogram!

I must repeat here, from above, what this physician did to me: "I remember the night the anger hit. It shocked me. After a complication of the chemo, I found myself on the bathroom floor, in terrible pain.  Alone in the house, fearful, it dawned on me that this could have all been prevented!  I experienced a crying I've never known. . . loss? Yes. Lots of loss!  And, terrible pain, that I begged for help with - in an empty house.  My prayers could be heard for blocks, I'm sure! Loss of confidence in people I trusted with my life. I don't think that I am the only one this is happening to.  Please check your physicians out, don't take one opinion, and take the time to build an excellent Team - if everything is all right, you'll be grateful for that Team's expertise (you're on it, too); if it's not, then you have the best Team to tackle the problem!

We'll see what happens with the next two physicians....the next radiologist missed 'it' last May, 1998!  And, it was much more evident then!  I'll keep you posted. The surgeon virtually ignored the Van Nuy's Index, and 'was traveling a lot," when I needed her.  Keep you posted.
 

4/22/99  Another letter received from the Texas State Board of Medical Examiners: Blank blank , M.D. (who missed the 'obvious linear calcifications" on my last mammogram), "because the evidence does not indicate a violation of the Texas Medical Practice Act."  However, it states that "A record of this investigation will become a historical part of our files."  This one surprises me, because the radiologist who did find the error and thank God, openly told me, the mammogram was highly suspicious for malignancy,  one of his partners, clearly stated, "I don't know how he could have missed this - he's going to feel terrible..."  Well if he felt so terrible why didn't he even telephone me, visit me, or do something other than try to protect himself!  This doctor telling me he was sorry, would have done a lot to help me during my worst moments, and I could forgive him.

I wonder if the Texas Medical Practice Act supercedes the "Oath" every physician must take!

It is important that we all check with the State Board of Medical Examiners to see what is in the files of physicians we chose.  Again, yes, everyone makes mistakes, but this is ludicrous.  The bottom line, can these physicians sleep well at night?

(note here:   After a surgeon performed a total hysterectomy and removed both ovaries,  I had terrible pelvic pain...it was as though my entire bony pelvis was a neon tube, lit up.  I couldn't walk.  I'd been home only about 2 days.  He met me at the ER and the first thing he said to me was that they were going to do an x-ray, and a re-count on the sponges....one may have been left in, by mistake!  Believe me, I went along with this physician, and I trusted him, even more!  It turned out I had swelling of the covering of the bones of the pelvis, from another procedure he performed at the same time.  Now, that's an honest physician.)

No further word from the TBME.

5/99:  TBME notified me that they were opening an investigation on my other complaint, regarding the surgeon, and if a hearing were to take place, I would be notified.

8/10/01  There has never been any replies in spite of repeated calls for progress information.  I did speak to the "investigator" assigned to me and she acknowledged some things for me, and hurriedly said that she would call me back.  That was in May, 1999.

March, 2003:  Information was provided to me, in a large group meeting in the State's capital city, that the Texas Board of Medical Examiners had NOT investigated complaints against its physician members for far more years than I had been ill.  In fact, it appeared from what I heard in this meeting, that my complaints were not completed at all, and I wasted a great deal of valuable time in my own attempt to let that profession police itself.  Therefore, I do not believe in Tort Reform.  Until a professional body can and does "police" itself and abide by its own By-Laws, any legal action must take place in Criminal Court, not Civil Court, just as it would if the patient were assaulted, or murdered. 

In reviewing other current actions by the Texas State Board of Medical Examiners, I've found that if I would have accused a physician member of any sexual misconduct or 'inferences,' they would immediately bring that doctor before their board.  Interesting.  The latter is embarrassing, isn't it!  But, maiming, killing, or further destroying a women's health status isn't as grievous.  This is not only pathetic, it should be against the law and dealt with accordingly, as it is in public law.