I am sorry that I have not been around to respond to any of your messages. My life has been spent in and out of the hospital lately. I'm lucky if I can get an entire week at home. I ask that you go onto the adhesions website and read my story. You will see that I do not give up either...I am not a quitter. I have traveled this entire country in search of a doctor who would help me only to be turned away at each location. They all initially tell me that they feel that they can help me, but as soon as I leave I receive phone calls or letters stating that they are unwilling to take my case on because it will kill me. I, too, believed that there were doctors out there that could help me.....and yes, I guess there have been some willing to operate, but it was by doctors who were ignorant to the treatment of adhesions. I have been through in excess of 50 surgeries in my life. Twenty-eight in about six years time. Each time I believed that I was helping other people suffering from this disease...and my self at the same time. It wasn't until after the twenty-sixth surgery by the same surgeon that I realized I was not only not getting any better, but that I was dying...despite the doctor's promises to take care of my problems. At that point I realized that he was only making things worse for me. I made a couple of attempts at taking care of the problems he had caused but almost died each time....and I don't say that lightly. I actually went into cardiac and respiratory arrest and was placed on a respirator. Only God got me through that! It wasn't until after I lost my grandson to SIDS and shortly thereafter suffered total renal failure that I realized that surgery wasn't an option for me. If I want to enjoy my child and my grandchildren I must avoid any and all surgery. I am dying....but I am taking the time to enjoy each and every day that I have with my family.
I know that this probably isn't what you want to hear. It is one of the unpleasantries of this disease. You talk of the research you have done regarding Seprafilm and Interceed, but you fail to mention anything about SprayGel. We are hearing some exciting results coming from Germany and Australia regarding the use of Spraygel. Did you know that it is actually cheaper to have surgery done in Germany (I don't know the costs in Australia)than it is here in the states? People don't think twice about borrowing money for a new car or house, but they draw the line at borrowing money to have what could be lifesaving surgery. Perhaps with a little bit of work your insurance might even cover it.
As I said earlier, please take the time to read the quilt. You will see why we are so hesitant at suggesting surgery.
God Bless you and your family. Don't ever give up the fight...just make sure you are fighting the right battles.
-- KarlaSun, 15 Sep 2002, Denise wrote: > >At Sun, 15 Sep 2002, Msvirgo9459@aol.com wrote: >> >>I just want to let you know that I do read emails not every day buT I do and >>when there is an annonymous name I will not respond cause I like to know who >>I am talking to. And also we are not medical professionals only people who >>suffer like you do..If you are not satisfied with the info as you come on to >>the site and reading the stories on the quilt you may find yourself in a >>termoil of uneventful surgeries because there aren't many docs who can offer >>you any more than what you have here.,There is no real answer to this problem >>it isn't like magic. We all still have been through many tests and surgeries >>to find ourselves right back in this vicious pain. This is not a know it all >>site. We suffer in pain and have to deal with it until maybe someday someone >>will find the cure but for now there isn't any in the US atleast.If you think >>you need some confirmation in what we tell you contact Dr WIseman and see >>what answers you get from him and I also want to tell youthat it may take >>some time for him to answer you as well because he is busy trying to conquer >>some help for us too. >>Lillian > >Let me assure you,, I didn't come to this site thinking to find the cure >all !!! Believe me,, I already know the odds and that there is no real >cure as of yet!!! But what I didn't expect to find was people that want >to place judgements on others for wanting to help or aid in the help to >finding a cure for this!! I don't want to "just sit by and wait",,, if >there is some way or some person or Doctor out there that needs the >actual real thing to work with,,, I am willing to supply them with >that!! I don't think that entitles me to being talked to or sent an >e-mail that is basically telling me I'm stupid for wanting to >try????????? And if I could afford to go to Germany or Austraila,,, >don't you think I would of been there by now???? Maybe more like 3 years >ago when this started?? Since I also know they do the brush-on in Europe >and have been for 5 years now with a very high success rate?????? Helo >out there,,,,, I can't afford to do it,,, so if there is one of these >Doctors out there that needs the patient,,,, "Hey Here I am" that's all >I'm saying here!!!!! That's all I was asking for,,, just was asking if >anyone knew of such a place or a Doctor!!! What I didn't ask for ,,, was >to be condemed for wanting to at least try!!! >Thank you >P.S. My first posting was not done as annonymous it was posted Sept 12. >titled "Information On Research Testing/ Volunteering".And my name is >right next to it! >Thank you again, >Denise