Re: THREE YEARS AGO...Christina D. Bueltemann

From: Sally Grigg (LostCst@mcn.org)
Sun Jan 26 19:40:41 2003


At Sun, 26 Jan 2003, Helen Dynda wrote: >
>IN MEMORY OF:
>
>Christina D. Bueltemann......December 3, 1952 to January 5, 2000
>Christina was from Menominee, Michigan. She leaves behind her husband and 3 children to mourn her untimely death. Christina suffered for 9 years before she was diagnosed on November 9, 1999 as having adhesions!!
>
>Christine suffered for 9 long years from adhesions caused as a result of gastro-esophageal reflux disease (GERD). She suffered with extreme pain, gastro-esophageal reflux, and vomiting. She even had to carry a plastic bag around with her due to the spontaneous vomiting that would come on at any time. She had undergone numerous surgeries and lost multiple jobs due to her suffering.
>
>Nine years ago Chris had gone to a doctor with symptoms of GERD! The doctor told her it was nerves and sent her home with an anti-depressant!
>
>As time went on, Christina's symptoms worsened to the point that she could not eat anything without suffering great pain and vomiting. In only four months her weight dropped to 96 lbs.; and for a 5'5" slim built lady, she looked like someone out of a concentration camp!
>
>It was then that the doctor decided that she indeed needed medical attention. Because she was starving to death, they flew her to one of Wisconsin's major medical centers. She had feeding tubes put in; and was fed for 31 days with supplemental feedings directly into her stomach! She had three different feeding tubes; because 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 pain and a pulling sensation in her abdomen. She went from doctor to doctor looking for a reason for her pains--but test after test came up negative.
>
>One doctor even accused her of having Munchausen's Syndrome (An unusual condition characterized by habitual pleas for treatment and hospitalization for a symptomatic--but imaginary acute illness. The affected person may logically and convincingly present the symptoms and history of a real disease. Symptoms resolve with treatment, but the person may seek further treatment for another imaginary disease.) She was accused of being a hypochondriac, a whiner, a pest! The eyes of ER staff people rolled when she walked into the emergency room; and they pulled out her thick files!!
>
>Pain persisted and was getting worse! She applied for and was denied disability benefits multiple times--although she was unable to work. She basically lived in poverty due to this disease; and due to no fault of her own.
>
>Over those nine years she tried valiantly to find help for herself--but was unable to find a doctor who would believe her or who would give her the right kind of help.
>
>A new young surgeon came into town; and Chris made an appointment to see him--since everyone told her how updated he was on things! She made her appointment and was thrilled when he agreed that she needed an exploratory surgery; because he was sure he knew what was causing her pain!! He said those three clamps had to come out. Of course, that made sense to her since the pain started shortly after that surgery!! It had to be those clamps!
>
>October 1999: Chris was prepped for surgery and the doctor decided that he had to do a laparotomy, if he is going to get those clamps out. He opened her up from just below her breastbone to the pubis! What he discovered much to his dismay were those nasty problematic adhesions! Lots of them! So he did an adhesiolysis and removed TWO clamps to boot! These clamps were located at the junction of her esophagus and stomach.
>
>Chris felt better right away--and was so happy that her problem was resolved and those clamps were out; but what about that third clamp she wondered! He didn't mention that one--but it must be ok. He's a newly graduated surgeon!
>
>Three weeks later Chris developed a vague pain and pulling again. She started to vomit and couldn't keep anything down. She constantly had a feeling of dehydration. She carried a bottle filled with juice or water everywhere she went, since she threw up constantly. The pain got worse and she went back to the surgeon saying that she thought the third clamp had to come out because she is in pain again! Her incision had also never healed; and after three weeks it was still draining and open!
>
>The doctor told her he didn't think he could go in and get that third clamp due to adhesions. He said that she still had so many adhesions that they would have to wait for six weeks; and then he would go back in and lyse the adhesions and remove the third clamp! He gave her a prescription for pain medication.
>
>The next week Chris saw the article on the ARD support group. She called and gathered lots of material and confronted the surgeon about adhesions and surgeries; and she confronted him about the necessity for the upcoming surgery. She asked if he was sure that the cause of her pain was the clamps--or could it be the adhesions causing her pain; because she thought she had alot of pain for just ONE clamp!?
>
>The surgeon admitted that when he ran into the adhesion problem he was surprised. He also admitted that adhesions cause pain; however, he took the clamps out while they were in there anyway. He also stated that a second surgery could prove to create more of a problem than it would resolve; so maybe she should try using the ARD support group to deal with her symptoms and stay on pain management.
>
>Chris was adamant that she would not agree to any more surgeries now that she had learned about ARD! She aggressively pursued the Social Security disability appeal; but continued to vomit and experience severe pain at times in her abdomen.
>
>She went to the emergency room six times at the very least following her surgery. All x-rays were normal. She had an elevated temperature which indicate infection; but she did have that open incision with drainage which could account for the elevated temp!
>
>Her last visit to the ER was on the evening of Monday, January 3, 2000! Her bowel x-ray was normal; and the doctor on call told her that the pain must be from her adhesions and that she should go home and rest!
>
>Chris called a good friend from the adhesion site to discuss her symptoms. Her friend told her that the pain sounds pretty severe just to be adhesions. Her friend thought the vomiting was unusual. She was so accepting that the pain was coming from the adhesions that her main worry was whether she would make her court appearance that Thursday! Her friend told her to call her attorney and explain things to him, to get his opinion of where she stands, etc.
>
>January 4th Chris's friend called to check on her. Chris's son answered the phone and was very upset and shaken! He said that something bad is happening to his Mom - that her temperature was only 96 degrees and she was in great pain! Her friend told him to get her to emergency at once and she would call ahead to the hospital. She said she would speak to someone about Chris's temperature and tell them that Chris was on her way into the hospital.
>
>On Wednesday January 5th at 9:30 PM Chris's son called to say that they were taking Chris up to surgery for a possible lacerated bowel! He said that he spoke to Chris and that the x-rays they took showed the abdominal cavity was filled with air. Air is NOT to be outside of the organs and free within the abdomen; and Chris was distended larger then a nine-month pregnancy! He also said that Chris was alert and even trying to direct the course of her care.
>
>Chris was scared, but trusting! She told him that she knew this time was bad, real bad! While they took her x-rays, he said Chris watched 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! So she went into surgery.
>
>At 1:00 PM on January 5th her son called and said he is so sorry to have to tell me that his mother didn't make it! She died today from complications of her surgery! DIED!! How? Why? When?????????????????
>
>The surgeon had punctured a hole in her stomach during her adhesiolysis; and her stomach contents spilled into her abdominal cavity causing peritonitis--thus her death from infection (peritonitis).
>
>Christine died on Wednesday, January 5th, 2000.
>
>In life Christine was unable to find the help she so desperately needed for her Adhesion Related Disease (ARD); but perhaps as a result of her untimely death, this will have an impact on people from around the world, who post messages on the International Adhesions Society Message Board - to learn as much as they can about their own medical condition and take whatever steps are necessary to seek out the best medical/surgical treatments available to them.
>
>Chris suffered alone for nine years before discovering her disease. Once she knew that she was not alone anymore, Chris fought desperately to get better; but she was already losing that battle when she reached out to help others who suffered as she did! She was going to make a difference, and she did! Christine was finally approved for disability benefits on the day of her death!
>
>Christine was the happiest she had been in years during these last four months that she was active member in the Bay Area Chapter of the International Adhesions Society. She was so ill, yet so happy as she finally knew what she had and that it was indeed real...ARD!

--
Dear Helen, Thank you for remembering our sister, Christina. We all need
to know that as bad as it sometimes is now, it was worse a few years ago.
Now you can sometimes find a doctor who believes you,but back even
five years, nobody believed ARD existed. Its so sad to think of Christina
and her family. In addition to the agony and bodily distress, she
had to deal with the humiliation of people's ignorance. Its so
unbelievable. Love, Sally

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