Re: frustrationsDr Semertzidies

From: toni welsh (twelsh1@hotmail.com)
Mon Sep 10 16:31:55 2001


At Mon, 10 Sep 2001, Karla wrote: >
>I don't know where to begin.....other than to say that I am angry.....and sad. I had my appointment Thursday in Chicago. At the time, I thought I was getting good news from my doctor...or at least news that gave me some hope. Today as I sit here, I realize that is not true.
>
>My surgeon told me on Thursday that they would NOT be placing any more tissue expanders in my abdomen. He said my body is rejecting any and all foreign materials....that would go all the way back to all the problems I had initially when they would do my hernia repairs and place the gortex, marlex or whatever materials they chose to leave. Each and every time infection would ravage my abdomen and they would have to remove it piece by piece. I also have MRSA which is Methyl Resistant Staph Aureus (think that is what it stands for) colonized throughout at least my abdomen, if not my entire body...so that every time they introduce foreign materials the bacteria just "wakes up" and attacks. This is something that will remain in my abdomen for the rest of my life.
>
>Anyway, the surgeon said that he would still do surgery....to "patch" my hernias using the muscle tissue from above my knees if needed. They would also do the new urinary revision, attempting to somehow correct the problems that are causing my kidneys to fail.
>
>I began by thinking that this was great....it wasn't quite what I have been anticipating, but at this point I just want an end to it......until I realize just what this "patch" job means and the other consequences of what I was told. The last hernia repair I had in August of 99 (remember, I have been working hard on having this repaired ever since then only to hit every brick wall imaginable) only held for a month and a half. Every time they have opened my abdomen up they have found not one hernia....or even two or three...but many hernias. I think the last count was 15...yep 15 hernias at one time. My old surgeon would tell the med students that my abdominal wall looked like swiss cheese. He told me that he had never seen anything like it before and he had no clue why it was the way it was.
>
>So, when I begin to think about this "patch" job they are going to do, I realize that there really isn't too much positive to say about it. I would be foolish to believe that this one surgery is going to be any different than the last 28 surgeries since 1991. The only thing different is a new surgeon. While I feel that my first surgeon screwed up...I don't think he was a bad surgeon. I think that he should have just admitted that he couldn't take care of my problem and try to find someone who could, rather than continue to perform 25 laparotomies which all had the same results.
>
>I anticipate...and believe me I am praying very hard for this not to be true, that within six months after this "patch" job my hernias will be back. Six months is the longest time I have gone before another hernia occured. I can live with a hernia. The problem is that these hernias begin around my urostomy site and cause extreme problems...not only with being able to maintain a seal and therefore having constant leakage of urine (a truly dehumanizing situation), but also cause the backflow of the urine into my kidneys. This leads to constant kidney infection, urosepsis and kidney failure and as my doctors have told me....eventually death. Once again, I have to say that I, for whatever reason, am not a candidate for transplant or dialysis.
>
>Even if the above scenario were not the case, and my body never herniated again, I would still be in the excruciating pain that I am in due to my adhesions. Everyone has been so focused on having Intergel approved in the United States for use...although I still have my doubts about its eventual effectiveness....and now when it looks like it is going to happen I am told that they cannot and will not put anymore foreign materials into my body. The thought of being pain free...or even have a much more tolerable level of pain goes flying out the door.
>
>You and I as victims of ARD need to continue to be angry. We must continue to fight whomever we need to fight in an effort to educate the American public...or for that matter the world...so that something is done regarding the manner in which surgery is performed. We need to prevent the adhesions from happening to begin with and so much of that depends on how that first surgeon handles your surgery. How does he handle your insides? Is he gentle and slow...not rushing to get your procedure done so that he can get to the rest of his day? Or does he just pull out your abdominal contents...throwing them on the table...or roughly shoving them back into your stomach? Does he take the time to thoroughly clean out the mess? These are all things we can do something about....if not by changing his way of doing things perhaps by finding a different surgeon....one who does consider your feelings.
>
>I cannot pin my hopes on Intergel. I must pin my hopes on finding a surgeon that successfully remove my adhesions and prevent them from returning without using foreign materials. And in my case, and I really think this should be true in everybody's case....it should be done in one procedure...maybe two. Paul, I apologize for attacking you regarding the number of surgeries that Dr. Semertzides performs. I think that you would agree with me that this is a big concern for an adhesion sufferer and if we can limit this we are all ahead. I am still open to talking with Dr. Semertzides...hearing what he has to say to me. I have traveled the country in search of an answer....what is a trip to Ohio? Not much further away than Chicago when you think of it? What part of Ohio is he in?
>
>Yes, I continue to have my faith....but I must also accept that even with the strongest faith the inevitable can and usually does happen. I can and have accepted that. But, I cannot accept the continued failures of our medical system. I ask that you stand up and fight with me. Contact me and we will get back with you (I already have a list of people that have agreed to help out in their states and will be getting back to them soon) about helping you set up appointments to meet with your state representatives to get state citations issued in as many states as we can in an effort to change just how Adhesion Related Disease is viewed and handled. I am serious when I say that we need to start thinking of our children and grandchildren and preventing them from going through the same pain and suffering we are. Won't you step forward and help?
>
>Love,
>Karla

I saw this Dr 3 months after I had been through 2 laparotomies, and one lap all in five months, and he thought nothing of telling me that in 2 months he would do surgery on me and it would take 6-7 operations, and seprafilm would be used...CRAZY! I want ONE more, and want to have guarentees!!! Did not like him he is in Cinti, Ohio, on the East side of town! Miss you all!

Toni


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