User Tag List

Likes Likes:  45
Results 1 to 10 of 17

Thread: Eight years later

Hybrid View

Previous Post Previous Post   Next Post Next Post
  1. #1
    Join Date
    Oct 2010
    Location
    Ohio
    Posts
    819
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default Eight years later

    It has been 8 years today, since I had a lung resection. It was an attempt to try to find an answer for all the cavitated masses in both lungs. I had been very sick for about six months or more, with high fevers, couching, hearing loss, rashes and headaches. The local hospital dx'd me with pneumonia before the surgery and didn't know what it was afterwards either. I had to be admitted to the hospital several times after that for the same symptoms. A friend of mines Aunt had been dx'd with Wegeners, and she suggested that I go to CC, to be assessed. I ended up self referring to Cleveland Clinic, after 2-3 months of not getting any better. I got an appt in July and they sent for my biopsies and reviewed new Ct scans. They called me in late August to tell me that I was to start treatment for Wegeners. I was so sick by then, that it did even register what was going on.
    It has been a long journey, with other health issues popping up. I have been dx'd with Wegs in my lungs, sinuses, and brain. I also have Small Fiber Neuropathy from Wegs. Last year, I had to have malignant Neuroendocrine tumors removed from my colon. I still have a lot of stomach problems and am addressing them by eating better.
    I have been on all the treatments for Wegs and now just take Rituxan every six months, Bactrium MWF and preds everyday. I am down to 6 pills a day from 24 when I started. I have to hold on tight at times and just do things afraid.
    I feel truly blessed to have made it through those rough times. I am so grateful to have all the friends, support and information from the people in this forum. Thank you all, things do get better!!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  2. #2
    Join Date
    Nov 2010
    Location
    ~46N1165W
    Posts
    1,938
    Post Thanks / Like
    Mentioned
    25 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Eight years later

    How are you doing now? And, how to you get along with just one lung?

  3. #3
    Join Date
    Oct 2010
    Location
    Ohio
    Posts
    819
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Eight years later

    Just a update on my Rtx infusion on 4/29. I met a fellow Weggie before the infusion, which is always great.
    I'm still trying to get my strength back and feel a little battered still. I didn't have any reactions this time,woohoo! I did the 1000mg, with saline, 135mgs Iv solmedral, If benadryl and a few tylenol. I will have another in six to seven months, Oh course still on preds and Batrium. My SFN seems to be acting up right now also. It will get better!
    Vdub, I had a resection, not a lobe ctomy, so I still have most of my left lung, thanks for askng. I hope all is well with all that had there infusions recently!��
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  4. Likes Alysia liked this post
  5. #4
    Join Date
    Mar 2017
    Posts
    273
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Eight years later

    It was n nice meeting you at the infusion center. Is this a case of "Misery loves company"? Na. I have had pleasant experiences will all of my RTX treatments. After the treatment I went to the new Avengers movie. at the Valley View theatre. (Nice seats).
    I didn't sleep well that night but I've gradually been feeling better. I think part of it is the knowledge that I will feel better lifting my spirits.

  6. Likes Alysia, Jaha liked this post
  7. #5
    Join Date
    Oct 2010
    Location
    Ohio
    Posts
    819
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Eight years later

    I haven't posted anything for a while, so here we go with an update.
    I am due to have an another RTX infusion 10/24 and boy could I use it. I'm having too many multiple problems and really would like to feel better before long.
    I have been having a lot of stomach and intestinal problems, we are trying to find the real reason for it. I had to go to the ER twice over a 2 mo period for pain and possible bowel blockage. Both Docs at 2 different hospitals thought it was related to Wegs and 1 gave me 125mgs of Solmedral and a gastric cocktail. I also went to a new Gastroenterologist, since I couldn't get in with mine until in Nov., he thought I needed to see my rheumy. He thoughts were that my Wegs is not well controlled right now. I saw my Rheumy last month and she didn't think it was at all related to Wegs. She was pretty mad at the ER doc for giving me preds. So here we go round and round.
    I am headed to my Neurologist tomorrow to have an other EMG. I have been having a lot of nerve pain, from Small Fiber Neuropathy and it could be the problem with digestive system.
    I also, still have over 20 polyps in my stomach and had neuroendocrine tumors removed from colon that were malignant, last fall. I am being tested for Carcinoid syndrome, which could also be the problem. I had to up my preds by 5 mgs, this last week because of having trouble walking, pain in joints, ears plugging up, headaches and nerve pain.
    I sometimes feel like none of them (doctors) want to be the ones to give me some answers or relief. My rheumy probably has me on her list of remission and isn't listening very well, about the possible smoldering of the Wegs.
    Sorry for the long update, life goes on, Thank God!
    This disease just keeps on giving!
    Last edited by Jaha; 09-25-2018 at 10:11 AM.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  8. Likes Rose, Alysia liked this post
  9. #6
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,371
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Eight years later

    I feel for you, Jana. Hope the rtx does the trick!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  10. Likes Jaha liked this post
  11. #7
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    313
    Post Thanks / Like
    Mentioned
    18 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Eight years later

    Oh Jana,
    You sure have had more than your share of problems. It all becomes overwhelming after a while.
    I am going to be thinking positive thoughts for your upcoming infusion.
    Never be sorry about a long update. We are here to listen and share. I believe this is one site where we understand the confusion of this disease.
    Masha

  12. Likes Jaha, Alysia liked this post
  13. #8
    Join Date
    Mar 2017
    Posts
    273
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Eight years later

    I'm saddened to hear about your latest bout of symptoms. I'll be there on the 23rd for an infusion myself but have been comparatively symptom free.

  14. Likes Jaha liked this post

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •