At Tue, 20 Feb 2001, Merri Ellen wrote:
> >At Sat, 17 Feb 2001, toni welsh wrote: >> >>At Fri, 16 Feb 2001, Merri Ellen wrote: >>> >>>Hello to all and hello to Helen! >>>You probably don't remember me as I have not posted here for quite a >>>while. I found this board in 1999 when I had what I thought was an >>>adhesion flare-up, as I call it. >>> >>>You encouraged me to pursue all avenues of diagnosis and I did. (Very >>>grateful for your encouragement to pursue that)I wanted to label it an >>>adhesion problem, get a surgeon to go in/stop the current pain, and then >>>move on. Well...1999 I was given a diagnosis of Fibromayalgia in >>>addition to my adhesion problem. Treatment for that squelched many of >>>the symptoms that had plagued me for years. Then in 2000 I started to >>>feel a variety of symptoms that included pain but did not feel like the >>>adhesion variety. Anyone who suffers that pain knows that it is very >>>specific and you are not likely to mistake it for a tummy ache or a >>>tooth ache! Flu hit in December 2000 and I never recovered from it. >>>January 2001 my primary dr. decided to run a Hepatitis panel and >>>discovered my problem: Hepatitis C. During my adhesion lysis, total >>>hysterectomy, gallbladder surgeries I was given blood transfusions that >>>probably exposed me to the virus. The blood was not properly screened >>>until 1992. >>> >>>I am returning to this board to see if there have been any improvements >>>in the adhesion lysis technique as I will have to have a biopsy of my >>>liver. The last surgery revealed that my adhesions had wound around my >>>bowel and had "secured" themselves to my spleen and liver. Although >>>they were removed in 1987 I am fearful of the progress they might have >>>made since that time. Although my vow at the time of the last surgery >>>was: "NO more surgery...I would rather die!, the condition of my liver >>>may cause me to rethink that position. >>> >>>My prayers are with each of you...I can empathize with your pain. >>>Helen...my biggest thanks go to you for your encouragement to me. It is >>>a dangerous thing to self-diagnose, just because we have had this pain >>>so many times. I was basically demanding for them to listen to MY >>>diagnosis and DO something for me. If I had not followed through I >>>could have put myself in more danger than I am right now. Listening to >>>my dr., putting up with testing that made no sense to me, being >>>pro-active in my healthcare decisions and accepting the fact that I may >>>have OTHER health problems besides adhesions...may just have saved my >>>life. >>> >>>-- >> >>>Warm Regard, >>>Merri Ellen >>> >>Hi Merri Ellen, >>I sort of remember you, I have been on this forum since the year it was >>found, I do not know if you remember me. My story is on the quilt. My >>sister just had a hyterectomy, 2 weeks ago, and she was diagnosed after >>a biopsy with hepititis C , she had blood transfusions many years ago, >>she also has crohns disease. The drs have not really saod what you do >>for this. Have you been diagnosed with it too? >> >>When they went in to do her surgery, the gyn and general surgeon did >>what they had to do, she also has a colostomy. She has recovered very >>well from all the hysterectomy, and it was done laparotomy, like mine >>was a very large incision. >> >>I have been having my troubles, I saw my gyn on thursday, and he thinks >>still that my situation warrants one more try, and he let me know he >>would go in with a general surgeon. I feel better about it. I hope you >>are all okay, and I have to get caught up as we just bought this >>computer today. I will talk to you all later. >> >>Take care of yourself, >>Toni > >Dear Toni, >I remember you well! I am sorry to hear about your sister and her series >of problems that are capped off by hep c. Ask her to find out which >test they used to diagnose her hep c. My first test came back positive >and yes...I had lots of blood transfusions in the 80's. Then my second >test, more expensive/supposed to be better, registered negative. So, >now I am seeing a hepatologist for a complete workup. Please make sure >she gets the most current and up to date info and care as many gp dr. >are not knowledgable about this potentially dangerous disease. Contact >me by email for links and more info. > >I called my gyn yesterday and he wants to me to come in for an exam and >a discussion about going in with a general surgeon to do an adhesion >lysis. I am 37 years old and my hysterectomy was done at age 22...he >still remembered me and I have not seen him in all these years. When I >do see him I will ask him about endo because many of you here suggested >that endo must have been the reason I needed a complete hyst. at such a >young age. Even on the phone yesterday he recalled the ectopic preg. >surgery, the three adhes.lysis surgeries, and the total hysterec. >surgery without ever mentioning endo...just the massive amount of >adhesions. More than he had ever seen in any other pt. Not that I want >that award mind you....thanks but no thanks. Sounds like I have more >than one problem going on and it will take more than one dr. to get to >the bottom of it. Do you have a general surgeon that you would trust to >work with your gyn? I had a lump removed under my breast and the surgeon >I had for that was wonderful. I hope that they will be able to work >together. > >I feel pretty good today...I really don't know why...but I am grateful >for the reprieve. :^) Had a good cry yesterday and got all of my >frustrations, and fears out in the open. Sometimes it helps just to >admit that I am angry and I am afraid. Afraid that I will end up in the >ER at the mercy of some bozo who can offer me nothing but grief. Angry >that I have physical conditions that I cannot control or eliminate on my >own. > >Well, it was good to hear from you again and I will be reading the board >for new info and to see how you are doing. Thanks again for your reply >message and all the help you have given in the past to me. > >-- >Warm Regard, >Merri Ellen >