i need to vent again!!!!!!!!!!!

    • Anonymous
      May 8, 2007 at 7:24 pm

      hi everyone. sorry i haven’t been on the website much lately, but i’ve had a lot of new crap going on with my health. as some of you know, my gbs left me with autoimmune hepatitis. the medicine i’m on for that has a high risk of causing upper digestive issues as well as skin cancer and lymphoma.

      well, on april 17th i had to have my gallbladder out and had another liver biopsy at the same time. i lost my gallbladder due to the medicine i’m on as well as getting esophagitis and losing my voice quite often from major acid reflux. i’m on the highest dose possible and my liver enzymes are still not stable.

      the latest liver biopsy showed that i went from a minute stage one of fibrosis to stage two to three. now i’m being put through a ton of tests and in a couple of weeks, will be starting a new drug given to transplant patients. i’m already on such a drug, but it’s not working. this new drug causes all kinds of nasty side effects that i’m really not looking forward to. the doctor explained to me that he really wants to treat me more aggressive this time because he doesn’t want my next liver biopsy to show cirrhosis of the liver and leading to a liver transplant. we even discussed live transplants.

      in answer to everyones next question; yes, this is my third opinion and this doctor i’m seeing is a doctor that other doctors go to. i believe i’m in good hands if other doctors go to him as well. i’m being treated at einstein medical center in center city philadelphia.

      ok. deep breath now. so i went for my two week follow up for my gallbladder surgery and i mentioned to the doctor that i have a ,lump below my right ear, the size of a golf ball. normally that wouldn’t be a major concern, but the drug i’m now on for my liver can cause lymphoma. the good news, it’s only one lymph node. i have to go back on june 14th and if it’s still there, he’ll drain it and biopsy it. in the meantime, i’m putting warm compresses on it twice daily. it’s probably just from the surgery or the fact that i had a sinus infection a few weeks ago and my lymph gland is just doing it’s job.

      thank you gbs for giving me such life threatening crap to deal with. (sarcasm of course). sorry for typos. my hands don’t work very well.

      i’ve also lost two relatives this week. one to cancer and one to a stroke. so needless to say, i’ve been in a funk lately and didn’t want to get online much. so thanks for listening. i just needed to vent.
      love you all,

      p.s. i will be at the june 10th gbs walk at oxford valley mall in langhorne, pa. is anyone else going to be there? i’d love to meet you.

    • Anonymous
      May 8, 2007 at 7:35 pm

      Hi Deb: Sorry to hear you are having such a hard time. I lost my gall bladder a year after GBS hit and it was no fun. As you know I thought I had liver disease too, which I do, but a very mild form not of concern. I would like an aggressive doc at this stage though since nothing has worked so far. Hopefully he will bring good results. And you know of course you can vent as much as you like. It is hard to deal with all of these body symptoms and the death of relatives on top of everything. You deserve a break from life and maybe it’s on the way. My analyst told me not to think of my symptoms as pathology but as a path that is leading me somewhere I need to be. Be well. Jeff

    • Anonymous
      May 8, 2007 at 8:55 pm

      Hi Deb,

      I’ll just send you big hugs if that’s ok with you.

      [SIZE=”6″]Big Hugs For Deb[/SIZE]

    • Anonymous
      May 8, 2007 at 9:18 pm

      I wish there was something I could to help. All I have to offer are prayers. You will be in my prayers daily.

    • Anonymous
      May 9, 2007 at 12:57 am

      Hugs Deb, your in my thoughts and prayers. Get in touch if you ever need anything.


    • Anonymous
      May 9, 2007 at 9:03 am

      Sorry you have this to deal with. Will pray for you daily, and keep you in my thoughts.