User Tag List

Likes Likes:  0
Page 1 of 2 12 LastLast
Results 1 to 10 of 12

Thread: New Member: Wegener's GPA Diagnosis 2016 & Lung CA 2014

  1. #1
    Join Date
    Sep 2016
    Location
    Cleveland OH
    Posts
    8
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Post New Member: Wegener's GPA Diagnosis 2016 & Lung CA 2014

    In May 2013, I had a severe asthma attack followed by chest pains. The next day I went to the ER, heart was okay but the chest scan showed a small nodule in lower lobe of left lung. Had several cat scans over the next 9-12 months to monitor the nodule. After a year, the nodule began to grow & change in shape. In May 2014, I had a needle biopsy & was diagnosed with lung cancer. I had a neuroendocrine atypical carcinoid tumor which does not respond well to chemo or radiation therapy. More tests, scans and lymph node biopsies were done. Thankfully, no other tumors were found. In July 2014 I had surgery to remove the lower lobe of my left lung. Follow up scans were done every 3-4 months to monitor my lungs. Almost 1 year to the day, in July of 2015, a chest scan showed new nodules in the upper and lower lobes of my right lung. During the needle biopsy, my right lung started to bleed excessively & they had to terminate the biopsy. A bronchoscopy was also done and no cancer was found. On April 6, 2016 I had an open-chest biopsy. On April 12th my pulmonologist called to tell me it wasn’t cancer but he said the news was not good. I was diagnosed with Wegener’s GPA. There was a lot of tissue damage in the areas surrounding the nodules so I was admitted to the hospital the morning after my diagnosis for three days of high doses (500 mg) of IV prednisone. I had my 1st Rituximab infusion (1000 MG) on April 19th & also started daily 60 MG of prednisone. I had 2nd rituximab infusion on May 4th & started to feel better within days. A lot of my symptoms (chronic sinusitis, a lot of nosebleeds, chronic cough-sometimes with blood, severe pain in back when coughing/sneezing, blurred vision, wheezing and shortness of breath) were improving. I was doing really well until August when almost all of the symptoms returned & some were worse than when I was diagnosed in April.

    I have diabetes & was managing it with several pills & a bedtime injection of insulin. The prednisone has wreaked havoc with my glucose levels. When I was in the hospital for the IV prednisone my glucose levels were 300-700. They had to check it every hour & give me injections of insulin almost hourly. Now, I have to check my levels 4-6 times a day, do insulin shots before every meal & at bedtime. I also have swelling of face, legs, ankles & feet which is due to the prednisone. I have been taking the antibiotic Atovaquone (Mepron) since April & I am currently on 14 daily meds: 10 prescriptions & 4 OTC.

    The last 3 years have certainly been challenging but I am extremely thankful & blessed that I am still here to talk about it. It sure beats the alternative!!
    Last edited by Lindy17; 09-19-2016 at 04:06 PM.

  2. #2
    Join Date
    Aug 2016
    Location
    Southern NH
    Posts
    333
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default

    Lindy, I'm glad you found us! Sounds like you've been through a tremendous lot! We are all in this together!!! If you have any questions there are very experienced members here who have been "around the block". Know that all questions are welcome! Wishing you the best!
    Gab
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

  3. #3
    Join Date
    Sep 2016
    Location
    Columbia, MO
    Posts
    37
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome Lindy. Us newbies have a lot to take in. Diagnosed in August. I've found the info here very helpful and the folks very friendly indeed.

  4. #4
    Join Date
    Sep 2016
    Location
    Cleveland OH
    Posts
    8
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thank you for the warm welcome Gab122 and blm. I am so glad I found this forum. Family and friends have been great and they try to help but it's hard for them to understand what we are going through. It is definitely a life changing diagnosis.

  5. #5
    Join Date
    Nov 2015
    Posts
    186
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome Lindy,
    It sure sounds tough.
    This disease is extremely tricky.
    Welcome to the group and hope you feel better soon.

  6. #6
    Join Date
    Sep 2013
    Location
    Northern Illinois, USA
    Posts
    803
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Lindy17 View Post
    TFamily and friends have been great and they try to help but it's hard for them to understand what we are going through. It is definitely a life changing diagnosis.
    Yes, and do as much to educate them as you go through things. Then maybe, just maybe they will begin to understand that your new normal is dynamic and changes every day.

    Welcome to the group!!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  7. #7
    Join Date
    Sep 2016
    Location
    Cleveland OH
    Posts
    8
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thank you Aneinu. I hope you are doing well.

  8. #8
    Join Date
    Sep 2016
    Location
    Cleveland OH
    Posts
    8
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks MikeG-2012. I have done a lot of research but it seems like new symptoms/problems pop up frequently. I am so thankful that I found this forum. Hope you are doing well.

  9. #9
    Join Date
    Sep 2016
    Location
    San Francisco
    Posts
    6
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Lindy17 View Post
    The last 3 years have certainly been challenging but I am extremely thankful & blessed that I am still here to talk about it. It sure beats the alternative!!
    hi lindy! i'm a newbie to this forum, too (mom of weggie and widow of PAN) and am grateful for your words. yes, it does indeed beat the alternative. hang in there, and wishing you the best!

  10. #10
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome to the family Lindy. Wow. You have being through a lot... WG is not worse then cancer, at least in my opinion. And having WG is giving you the privilege to belong to our beautiful group
    Not sure I understand if it was cancer also in your lungs at the beginning, or misdiagnosed wg ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

Page 1 of 2 12 LastLast

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
  •