Re: I asked Oprah for help
From: Wally (email@example.com)
Tue Jan 15 00:12:12 2002
At Mon, 14 Jan 2002, Jo Eslick wrote:
>I have written a letter to Oprah to see if we can get some help for Karla and to also try once again to bring the adhesions cause to her attention yet again. Below is a copy of the letter I sent to them. I hope to have another one drawn up for you to use to send to Oprah, and other TV current affairs and chat shows. Eventually if enough of us write about this subject, they might actually take a look at what we are living with!
>My name is Joanne Eslick and I am a member of a group of people who live with pain resulting from Adhesions. Adhesions are internal scar tissues that form after a surgery. For some reason, still unknown in the medical world, some patients have a tendency to form a more aggressive type which surrounds the body’s internal organs and cause the patient a great deal of pain.
> There is no medicine or antibiotic that will dissolve or remove adhesions. Currently the only way to give a patient relief from the pain is to perform another surgery to “take down” or remove the adhesions. The disadvantage of this is that surgery will simply cause new adhesions to form. So far there are a very minor number of patients who find relief from the pain after this operation. Most will continue to have pain, with some finding pain increasing. The patient will then request the surgeon to try again and if the surgeon refuses, the patient will seek another surgeon willing to try again. There are a few “barriers” being used to protect an area after surgery, these barriers are designed to protect the organ for the first 7 to 14 days after surgery. This is the time in which adhesions form. After that time, the barrier breaks down and is simply absorbed into the body fluids and discarded. There are some encouraging results, but still no red flags waving to say that this is the answer.
> To help us cope, many have found friendship, support and understanding through a support group that communicates via a message board on the International Adhesions Society at http://www.adhesions.org. Through this message board we exchange information, offer encouragement and understanding to anyone who posts a message.
> One of our group members Karla Nygren, has endured over 50 surgeries in her lifetime and is currently in a very serious life-threatening situation. The same doctor performed all the surgeries that she has had since 1991, as she did not want to run from doctor to doctor. It was only after 27 surgeries that she said enough is enough and sought help elsewhere. A number of years ago her surgeon removed her bladder because of problems that developed after surgery. The initial surgery was to help Karla gain control of her bladder. It has only been in recent years that Karla learned that the bladder had been encased in adhesions and the removal of these adhesions would have undoubtedly solved the problem. Karla now has a urostomy and lives with daily discomfort and embarrassment due to a faulty seal on this device and it constantly leaks urine and so inhibits her ability to enjoy outings etc.
> Since that particular surgery there have been many more, each making her life a little more difficult and complicated. There have been many times when infections and other debilitating side affects have occurred due to the surgery.
> Many surgeons have been approached to rectify this problem and all have refused to operate because they fear that she would not live through the surgery. Karla argues that she will die soon anyway from a massive and painful kidney infection if the fault isn’t repaired. Karla feels that this surgery is her only opportunity to live what is left of her life with some dignity and then she would no longer have to live with the fear and realisation of this inevitable infection and kidney shut down. Even if they were to just repair the hernia her remaining days would be spent living in dignity.
> Right now, Karla is living on the edge; her situation is so critical that she is more or less waiting to die. Her most recent problems include frequent and serious kidney infections, which hospitalise her so that heavy antibiotic treatment can be used to stabilise her situation. Karla cannot be a candidate for a kidney transplant because of other certain complications, nor would she be able to use dialysis as a treatment.
> Karla has built up over the years a resistance and allergic reaction to many of the antibiotics available to treat such infections, and her doctor has now just a very small number that can be expected to effectively cure any kidney infections. Karla has already experienced an episode where her kidneys began to fail and shut down and her family was called to visit her, as she was not expected to live.
> Now Karla is feeling unwell and knows from her past experiences that she is indeed very ill, and that she is heading towards another of the life threatening kidney infections, which rage through her body. Her problem is that her doctor is unwilling to prescribe antibiotic treatment to stop the infection from becoming more aggressive and serious. He feels that if he were to prescribe the medication for her now, there would be nothing left with which to fight any infections that bring her close to death. Karla cannot understand or accept this line of thought; she feels that if it is left to get worse then her chances of surviving another infection are almost non-existent. She doesn’t want to die, she wants to live, with a beautiful and precious daughter currently grieving for the loss of her baby son due to SIDS, and her two precious granddaughters Karla wants to live.
> Karla and I are currently writing a book about our experiences, about our pain, how it has interfered and destroyed a large part of our active lifestyles. Both of us have family, loved ones and friends who we want to spend time with, to enjoy life and celebrate our blessings. Through all of this we still feel that we have much to be thankful for and we still have much we want to do. We want to fight for the recognition of ARD and we want to be treated with dignity and respect and to receive proper medical assistance.
> Karla has lost the energy to continue the search for help herself, she is not complaining about her doctor and saying that he has failed her in his duty of care. However, Karla feels that because the situation is for her now quite literally a matter of life or death, she should have the right to say, I WANT THESE ANTIBIOTICS TO TREAT THIS INFECTION NOW.
> More than anything Karla wants to find a surgeon willing to give her some dignity, she has made her peace and is ready to go with God, if that is his wish BUT Karla would like to do this with a sense of dignity and pride restored. Let her daughter and her precious grandchildren remember Karla as a beautiful happy woman with a sense of pride and dignity who was happy enjoying the simple things in life without the constant and overpowering (in Her mind) scent of urine.
>Karla and I don’t want anyone to travel down the same path, and that is why I have written to you today. I would appreciate any help your organization could give us in terms of referrals to a surgeon willing to perform surgery to repair Karla’s hernia and perhaps the leaking seal on her urostomy and, we would be grateful to receive some sort of sponsorship.
>Karla and I are writing the book in the hope of stimulating public debate, discussion and even perhaps the start of a research foundation working on discovering what predisposes certain people to this invasive and painful condition. Then perhaps formulating guidelines for front line doctors to understand and treat this condition with appropriate forms of pain medication and referrals to pain control centres where patients can learn diversional therapies as an alternative or to enhance the drug treatment to keep pain under control. We would welcome the opportunity to talk with you about interviewing Karla and I about this topic we would like to invite you to follow us around the USA as we present “Living with pain seminars and workshops” to the many chronic pain patients that are living in our neighbourhoods and perhaps even next door to us.
>Enclosed with this letter is a brief outline of some of the pain and surgeries we have endured over the tears and touch on some of the daily issues that arise from living with ARD.
>There is so much more I can tell you, and I plan to send you more information as I have the time an opportunity to make it easy for you to skim over and find reassurance that helping us bring this dreadfully painful and costly (to the patient, the healthcare insurance provider as well as the government of countries around the world who regularly use surgery as a treatment option for a wide variety of illness and disease.)
>It is my hope that by putting Karla’s story on your show, we will begin the long and difficult task of stimulating conversation, debate, recognition and most important research into this difficult disorder.
> The International Adhesions Society web site developed by Dr David Wiseman has become an invaluable source of medical information and an incredibly loyal and dedicated group of people eager to help ease the distress and feeling of hopelessness most people experience until they find us.
> Please help us find a surgeon willing to give Karla just one last chance at hope and dignity, allow her time for her family and give her the time and support to help us write a book which we plan to publish to let as many Adhesions Related Disorder sufferers around the world know that they are not alone.
> Oprah I have been watching your show for years now and I love the way you strive to show a positive image no matter what the subject might be. Karla and I spend hours on the Internet chatting with each other and help strangers who visit the board for the first time. We always try to give everyone a warm welcome and begin the foundations of friendship, because pain can easily make someone a lonely person. As the days and weeks roll by and no relief seems possible, through the screen of a PC a hand of friendship is reaching out and offering to understand, comfort, inspire, console, encourage and educate. With so many out there willing to do this, it soon becomes clear to a “newbie” as we like to call them drops by to leave message of joy, sorrow or fear we KNOW that someone will respond and give our new friend a gentle nudge to hang on and fight, because one day it will be our turn in the spotlight, and we will shine and dazzle because of the bond and strength of our friendship and love.
>Oprah we would be thrilled to receive your blessing and support for our disorder and know that you will tell our story and help Karla find the life saving treatment she so desperately needs. When our spirits are down and our pain is high, it is you and your show that we dream of with your enthusiastic participation in our stories, exercises our demonstration and instructions of diversional therapies. If Karla and I can save just one life by her continuing to write and search for the answer to her pain, we will feel so blessed and we will know that it was all part of Gods plan for us.
>Please feel free to contact me any time of the day or night discuss this very topical story. I will be happy to supply you with further information and other adhesion sufferers stories if that is what you would like you see to assist in seeing the value and community service you would be doing for your fellow countrymen and women, as well as countless thousands of others right around the world. (Including little old me here down under in Australia!)
> Most Sincerely Yours
>P.O. Box 1919 Email firstname.lastname@example.org
>Bathurst NSW 2795 OR email@example.com
>It is my hope that all of you will take the time to send an email to help Karla, I know that you would appreciate the same help if it was you facing an earlier death because of the complications adhesions might cause for you.
>love & gentle warm hugs
P.S. I'm not a doctor or medical person, just a fellow
adhesions sufferer who really wants better treatment
for us all.