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Thread: My journey so far

  1. #1
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    Default My journey so far

    Where to start...in June 2018 I started coughing up little specks of blood, local CC pulmonary Dr., at that time, said just a little irritation from your COPD. Here is a script for prednisone and an antibiotic..over and over, I had a running scripts to calm a COPD exacerbation! didn’t help. I went to my primary, it’s now May 2019...who ordered a low dose lung cancer CT. Results showed 2 spots that needed further investigation so another CT this time with contrast. Now I’m told you need a PET scan, then I’m told I have lung cancer. So we do a needle biopsy results say no cancer, inflammation and infection present. Dr. Says this can’t be right so off I go for another needle biopsy of the other spot this time
    because of PET scan that showed hot spots of cancer so they were determined I had cancer. 2nd needle biopsy says no cancer present. By this time I had changed pulmonary Drs. The new dr. ordered CT...the changes in the masses were significant, so they sent me to a thorax surgeon in another city for an open lung biopsy. The thoracic surgeon told me that the masses had to be removed as they were growing at a rapid rate. Went into surgery not knowing if I was having a whole lung removed, or a double resection or being closed up with an outlook of facing lung cancer that was in operative...after I was told I was very lucky he was able to just scoop out the masses with no problems.nothing but dead tissue, my lungs were dying..now we wait for pathologist report. (It’s now Feb 2019) all those wasted months....no cancer but Wegeners/GPA. ( NO doctor should tell a patient they have cancer til they are POSITIVE) The new pulmonary dr. Put me on prednisone 60 mg. and methotrexate 15 mg once a week and set me up with a rheum. Saw her 2 x and was informed she was moving her practice to Cleveland and did I want to follow her? Of course, She was weaning me off the prednisone and keeping the methotrexate...it wasn’t going well... I was totally off prednisone 3 days and symptoms were horrible, so I called..told she’s between places and can’t be reached. Well hell, I’m suffering so on my own I started back on 30 mg prednisone, week later still a mess, call again still no Dr. to help so I upped to 40 mg did some research and called Cleveland Clinic and made my own appt. with Dr Villa Forte was able to see her with in a week. Had my appt with her this week and am waiting to find an empty chair appointment for my first infusion of Rituxan, here in my town at the CC cancer center. There is evidence of nasal, lung and a small amount of blood in my urine. It’s been a long road, Things I learned.....to not sit there and take what Drs say and to research and argue if need be, to get your voice heard, nobody knows your body better than you do, not all positive pet scans mean cancer and ask about the rheumy’s experience with Wegeners. Thankful I’m now on the right track. Sorry this is so long but it’s my journey and it’s not been easy. I feel like crap all the time with aches in joints, wheezing, shortness of breath, low grade fevers, nosebleeds and just exhausted. I gave my notice at work yesterday and he left my job open if and when I want to return. So thankful! Hugs to all suffering, recovering and in remission. Karen
    Last edited by Khilde; 10-26-2019 at 11:58 PM.

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  3. #2
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    Default Re: My journey so far

    Hi Karen,
    Welcome to the forum. I am sorry and disappointed in your experience with Drs. I have had my share of ignorance from them myself. At least now you have a diagnosis and can work on feeling better.
    Natty


    Sent from my iPhone using Tapatalk

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  5. #3
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    Default Re: My journey so far

    Sounds very similar to my experience. I've had lung issues for a very long time. I have bronchiectasis and was diagnosed with asthma for years until someone finally did a bronchoscopy and saw that I had a very narrow opening to my left lung. That has started the chain of events that got me to Dr. Villa Forte. I'm still waiting to hear back from her about my plan. I saw her last Friday for my first appointment.

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  7. #4
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    Default Re: My journey so far

    I'm sorry to have missed this thread earlier somehow. Karen, how patient you have been on the long road towards a diagnosis. It's true that not all rheumatologists and pulmonologists know much about Wegener's/GPA. I see you and Mindy have both started seeing Dr. Villa Forte, and you are fortunate to be able to, as I've heard so many great things about her. I certainly hope you are both doing well and have moved beyond all the uncertainty and confusion about what was going on with you, and are feeling much better. I was diagnosed in 2011, and am doing fairly well for my age of 67, but understand that the disease can be capricious and turn ugly again when it's least expected. Keeping stress at bay will help a lot, along with having a good doctor, and sticking with the forum will do you a lot of good, reading current posts as well as searching the archives for any topics that interest you. Every case of WG/GPA is a bit different, and no doctor has time to go over all the various ways the disease may affect us, nor do they necessarily know what to expect any more than we do. That's why the Forum is here, and though it doesn't make us experts, a great deal of helpful info is available from those of us who have been here awhile. It kind of sinks in over time. Best wishes for recovery and moving on with your lives, for both of you and all other forum members.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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