Re: Dateline - Getting the Word Out

From: Bernie and Beverly Doucette (
Wed Jan 5 22:37:15 2000


1/5/99 Beloved Member of the Bay Area Chapter of The International Adhesion Society

Christine died this morning at 7:30 a.m. She leaves behind an 8 year old daughter, Amanda and an 22 year old son, Freddy and her husband Glen. The impact of her loss will be felt by her friends in the ARD support group. Chris's desire this year was to complete her Social Security disability claim..and her attorney was prepared to present her case for that disability as Adhesion Related Disease! And he felt she was going to win this time due to the new information that he had from the IAS regarding Chris's previously elusive medical condition!

Chris is the young lady who I mentioned in my letter yesterday who had that 350 cholesterol count while on feeding tubes for 31 days. I want to tell you her story as had she lived her intention was to buy a PC and share it with all of you! She was also going to explain how she went about getting as far as she did for the SS disability..she wanted to help others with ARD so much and she would have to! She called herself the 1-800 queen because when she started to advocate for herself, she was able to secure any and every bit of material she needed to get her case reviewed again and scheduled before a Judge! Chris was a persistent and unrelenting person who had every right to that disability and even though she wasn't sure what her problem and pain was from, she did know that it was causing her disability and she needed to support her children and by GOD she wasn't going to give up on that disability! Chris had a Michigan Senator behind her, the judge and some very good attorney's..all by using the I-800 numbers!

Tuesday, Novemeber 9th, 1999: Chris called me the very same day an article appeared in our local newspaper announcing the first meeting of our " Bay Area Chapter of the International Adhesion Support Group. " Chris said when she read that article she was seeing herself in it and she knew for the first time what she had! She had JUST had an adhesiolysis surgery four weeks prior to this article, so she knew what adhesion were and now she wanted to know more..she wanted to know EVERYTHING! And she was almost giddy with relief that she wasn't alone! For the first time in nine years she knew the DR's had been wrong and that she WAS right in that there was a cause for her pain and suffering. She know knew that she was not CRAZY! How many of US see ourselves in her story already?

Chris was immediatly active in the support group, and was like a sponge soaking up everything she could get her hands on regarding adhesions! When I would bring new updated material that Helen Dyunda would post on here, Chris would be the first to ask what Helen had sent this month and as she scanned over the titles we would hear her say, " Done that! " " Been there! " " Yup, thats me alright! " and smiling away as she finally had a concrete answer for her undiagnosed pain and suffering! She still was suffering great pain and it had been 6 weeks post operative at this time. Chris asked if I could assist her with her appeal for the Social Security Disability as she had been denied twice. Of course I would and as we started to meet almost every day, either by phone or personal visits, we were able to put together a convincing file filled with substantiating information on ARD ...this was sent to her attorney, whom she had not had contact with since the last appeal in 1996 which she lost!

I remember how excited Chris was when her Attorney called her two days later and was astounded by the wealth of current information on ARD and of course the fact that Chris indeed had adhesions came from that adhesiolysis in October of "99...he was not only impressed with being able to bring her file up to date, he felt that she indeed had enough information to get this appeal recognized.

Much to our surprise, as with her attorney, Chris received a letter from the SS disability review board only one week after submitting that information that she was granted a hearing in front of Judge O'Doud on January 6th, 2000 at 8:30 a.m.! An appointment that she couldn't wait to get to...but would never arrive at!

Chris allowed me to shadow her to all her attorney appointments and requested that I also accompany her to the four DR. appoinments that she would need to arrange so that they could fill out their portions of the disability appeal forms. These appointments were a crucial part of this hearing as she needed to have each Dr. that had or was currently seeing her as a patient, write a medical statement with a diagnosis, and give the physical reasons why that diagnosis would disable her. In other words, when Chris made the subjective claim as to the symptoms she was suffering that kept her from being able to work, she needed a DR. to give the physical cause substantiating her symptoms and why those physical problems would keep her from being able to work! Subjective and objective had to work together in order for her to get that disability! Not so much WHAT she had as in a disease, but WHY did that disease disable her! And it had to pertain to what she was able to do at the current time, not in the past or any projected outcome of the had to be her current physical condition..CURRENT symptoms that would be great enough to disable her from being able to work at the time she had her hearing! Key word here is not what disease she was suffering from as much as how she was suffering from that disease, or medical condition!

I was able to learn exactly how a SS disability claim should be worded, what one must get from their DR to substantiate thier symptoms and a wealth of information as to how to appeal a SS decision and what to do to get a hearing if you loss the the case.

Christines intent was to teach as many ARD sufferers as she could how to secure thier Social Securiyt Disability...and even in death, she will have accomplished that goal!

Nine years ago Chris presented to a DR. with symptoms of GERD! The DR. told her it was nerves and sent her home with an anti depressent! As time went on, Chris's symptoms worsened to the point that she could not eat anything without suffering great pain and vomiting. In only four months her wieght dropped to 96lbs, and for a 5"5" slim built lady, she looked like someone out of a concentraton camp! It was then that the DR decided that she indeed needed medical attention and as she was starving to death, they flew her to one of Wisconsins major medical centers where she had the feeding tubes put in and was fed for 31 days with supplimental feedings directly into her stomach! She had three different feeding tubes as each one gave her problems and had to be replaced. When they were finally removed for good, three clamps were inserted to close the incisions on the stomach where the tubes had penetrated for so long! Once Chris regained most of her health back, and was being treated for the GERD, she returned to work and then became pregnant with Amanda! As the years rolled by, Chris began to experience this " pain " and " pulling ' sensation in her abdoman. She went from Dr. to Dr looking for a cause, test after test proved negative for a cause. She was accused by one Dr. as having Muchuchins disease ( where one self induces thier bodies with chemicals or poisons to get ill so they can seek out the attention of medical personel as they crave pain and attention. ) She was accused of being a hypochondriac, a whinner, a pest, eyes rolled when she waliked into the emergency room and they pulled out her thick files!! Pain persisted and was getting worse! She couldn't work any longer and applied for SS diability to no avail until recently! Two applications, two loses to date..and now she was finnaly being considered...almost to her goal now! A new young surgeon comes to town in 1998..Chris makes an appointment to see him as everyone tells her how updated he is on things! She sets her appointment and is thrilled when he agrees that she needs and exploritoy as he is sure he knows what is causing her pain!! What else but those three clamps in the stomach!! Didn't take a rocket scientist to figure it out...and of course it sure made sense to her as the pain started shortly after that surgery!! Had to be those clamps!

October 1999: Chris is prepped for surgery, doctor decides that he has to do a laporotomy if he is goping to get those clamps out, so he opens her up from just below her breat bone to the pubus! What he discovers miuch to his dismay are those nasty problematic adhesions! Lots of them! So he does an adhesiolysis and removes TWO clamps to boot! These clamps were located at the junction of her esophogus and stomach!

Chris feels better right away and was so happy that her problem was resolved and those clamps were out...but what about that third one she wondered! He didn't mention that one, but it must be ok, he's a newly graduated surgeon!

Three week later Chris has this vague pain and pulling again..and starts to vomit up everything. She is constantly feeling dehydrated..carried a bottle filled with juice or water everywhere with her as she was just parched all the time. pain gets worse, she goes back to the surgeon saying that she thinks the third clamp has to come out as she is in pain again! Not to mention that her incision never healed and after three weeks it was still draining and open! Dr tells her he doesn't think he can go in and get that third clamp due to adhesions. He said that she had so many adhesions yet that they would have to wait for six weeks and he would go back in and lyse the adhesions and remove that third clamp! And gave her a prescription for pain medication. The next wek Chris see's the article on the ARD support group. Calls and gathers lots of material....confronts the surgeon about adhesions and surgery's...and asks about the necessity for that upcoming surgery and if he was sure that the cause of her pain was the clamps or might it have been and is now adhesions that are causing her pain as she has a lot of pain for just ONE clamp!? Surgeon admits that when he ran into the adhesion problem he was surprised, and that yes, adhesions cause pain, but he took the clamps out while they were in there anyway. He also stated to her that a second surgery could prove to create more of a problem then it would maybe she should try using the ARD support group to deal with her symptoms and stay on pain management.

Chris was adament that she would not agree to anymore surgerie now that she had learned about ARD! She aggressivly pursued the SS disabilioty appeal..but continued to vomit and experience at time severe pain in the abdoman. She presented to the emergency room at the very least six times following her surgery, all x-rays normal, temp elevated some but she did have that open incisin with drainage so that indicated an infection which could account for the elevated temp! Her last visit to the ER was this last Monday, Jan. 3rd in the evening! Bowel x-ray normal, DR. on call tells her the pain must be from her adhesions...go home and rest!

Chris calls me to discuss her symptoms. I tell her that the pain sounds pretty severe to just be adhesions, but the vomiting is really unussual...she is so accepting of it being adhesion pain that her worry is will she make that court appearance come Thursday! I tell her to call her attorney and explain things to him, get his opinion of where she stands etc...last time I ever had the pleasure of hearing Chris's voice...............

Tuesday, January 4th, 7pm..I call to check on her and Freddy answers all upset and shaken! He says that something bad is happening to his mom and says her temperature was only 96 degrees and she was in great pain! I tell himto get her to emergency at once and that I would call ahead to my daughter who was working that shift to meet them there! ( She is an x-ray tech ) 9:30pm our daughter calls to say that they are taking Chris up to surgery for a possible lacerated bowel! She tells me that she spoke to Chris, took x-rays that showed the abdominal cavity to be filled with air. Air is NOT to be outside of the organs and free within the abdomen and that Chris was distended larger then a ninth month pregnancy! I ask if I should come down there, she said no as Chris would be in surgery and there was nothing to do but wait now! She also said that Chris was alert and even trying to direct the course of her care, Chris was scared, but trusting! She told my daughter that she knew this time was bad, real bad, and as my daughter took her x-rays she told me that Chris watched her every move with large eyes pleading for help... she didn't speak anymore as she saw all the hustling and rushing to get her to surgery and she knew it was bad, real bad! She went off into surgery................................

Wednesday, January 5th, 2000 8am I call the hospital to get a report on her..ICU they say. I ask how she is, they can't tell me as I am not a family member. I ask if I can send her a plant to keep outside her room...they simply answer that it is up to me, short, firm answer. I think it is because they cannot tell me anything at all as i am not a family i order the plant and send it up!

Ipm...Freddy calls me and says he is so sorry to have to tell me that his mother didn't make it! I ask what he means, " Didn't make it? " what does THAT mean? She died today from complications of her surgery! DIED!!

How, why, when, ?????????????????????????????????????????

Oh my God, not Chris! What went wrong? To early to know.

I spend the rest of the afternoon with members of our support group, all of us in shiock, unbelievable, no possible, only 45 and so filled with plans and hope! The kids, my GOD it is so hard! I think about what we did and i think about what we wanted to do, I don't know what to think!

7pm Freddy called...wanted to talk about mom! Amanda not doing well, Glenn not doing well, he will pull them all through. Wanted to know how to spell our group as they want that in her obituary as an active member. Fred said that she felt so happy being involved with the support group, everydy she would talk about what she was doing with the group, how knowledgable she was getting abour ARD and how once she got her PC she too would be helping others so that they didn't have to suffer the indignitys that she had suffered on top of all the pain!

Then Fred asked me if he could ask me a question. Of course. " During the surgery they found a golf size hole on the top of her stomach at the junction of the esophogus, was that caused by adhesions, " he wanted to know , " as she had just had that adhesiolysis only a few months ago you know?" I knew and then I asked him if he knew anything about the clamps that were in place in her abdomen when the feeding tubes were removed? No he answered and asked what they were there for. I explained that they were there for the purpose of holding the site where the tubes penatrated into her stomach as a means to keep them closed after the tubes were removed. I told him of Chris's discussion with the surgeon as to the surgeon having removed two of the clamps during that adhesiolysis surgery last October, and that he infact did remove two clamps during that surgery as long as he was in the abdomen. Freddy asked me, " Where were those clamps located in her abdomen, Mrs. Doucette? On the top of her stomach at the junction of the esophogus, based on her operative reports from that October surgery!

Christine would have been 46 years old this year

>----- Original Message -----
From: Anne Hayashi <> To: Multiple recipients of list ADHESIONS <> Sent: Wednesday, January 05, 2000 5:39 PM Subject: Dateline - Getting the Word Out

> Down with the flu and have been watching Dateline for the
> past two broadcasts. The first one this past week dealt
> with endo and problems associated with Lupron. The second dealt with
> the controversy over fibromyalgia. Maria
> Shryver has been doing the interviews. Perhaps it is
> a good time for all of us to write into
> and let them know about ARD and the many problems associated
> with it. Since we don't have a high profile celebrity
> representing us, and are not considered a "blockbuster",
> disease, it may be time that we try to get some
> media attention through a mass write in campaign. Others
> have accomplished it, why not us?
> There is strength in numbers, and I pray this will
> be one avenue for putting this disease on the map.
> Best wishes to all of you this Millennium,

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