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Thread: New Member Introduction 😉

  1. #1
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    Default New Member Introduction 😉

    What a wonderful support group! My name is Trena, I live in Phoenix Arizona, I am a single mother with 2 kids and I was newly diagnosed in March 2015 (at the age of 41) with Wegener's Disease. I was struggling with sinus issues for a month and a half and I had just thought that I had terrible allergy issues. I was given 3 different prescriptions from my primary doctor and 2 from my ENT and still no relief. It wasn't till my left foot and left had awful tingles and a shooting pain one evening that I knew I had to go immediately to the hospital. The doctors were wonderful and after a week of many test a lung biopsy confirmed that I had Wegener's Disease with growths in my lungs, kidney damage, sinus issues, hearing loss and neuropathy. I started my Chemotherapy on April 1st in a pill form that I took daily at home. Due the my lowered immune system I unfortunately was admitted to ICU July 5th with PCP Pneumonia. After a kidney biopsy the doctors informed me that I was now in remission and I had no active Wegener's issues (the growths in my lungs were gone and I do have some kidney damage, yet nothing too bad). I was pleasantly surprised since I was where the doctors wanted me to be after 3 months of chemo vs 6 months of chemo. Due to an issue with medication not agreeing with me I was admitted back into ICU for a week at the end of July which was caught early. I was on oxygen full time due to the pneumonia for a few months and now I only need oxygen in the evenings while I sleep for about 3 more months.

    This has been quite an amazing journey for my family and I. I was blessed with amazingly supportive parents to help out with my 8 year old son and 10 year old daughter. My kids are my strength and I discussed every part of this journey with them so that they were not scared (ex: chemo is a medication to help mommy get better and not a scary word). My kids would visit me in the hospital and have to wear a gown, mask and gloves, yet we were all together snuggling in my bed on the journey together. I am also extremely blessed with amazing doctors which work well as a team. I go in for weekly blood tests near my home, the results are sent to all my doctors the next day and they contact me if there is a problem (which happened this past July when I was instructed to go to ICU immediately). I see my doctors every month and I am just now starting to embrace my new "normal" life and the issues I need to be aware of. I did lost most all my hair due to the chemo, yet it has already started to grow back and I'm just thankful....thankful to be here today with my kids! I also had a autoimmune disease 21 years ago (ITP where I had a month of chemo and eventually my spleen removed). Just like Wegener's, the doctors don't know how I got ITP.

    I look forward to talking with several of you and continually learning more our this disease and the journey ahead that we all deal with. I can't wait to read through all these threads and soak in all the information I can get!

  2. #2
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    Hi, Trena, and welcome to the forum! I'm guessing you were or are on CTX (Cytoxan, Cyclophosphamide) as initial treatment and probably some prednisone, too. It's troubling that you've gotten pneumonia while you are being treated, and I'm wondering if you are on Bactrim, an antibiotic many of us take 3X per week which protects against certain opportunistic forms of pneumonia. Can't say that it is an absolute preventative for all pneumonia, though. What was the med that gave you problems and landed you in the ICU? Despite your problems and hospital stays, you have done very well to have been declared in remission from WG after only 3 months of treatment. Are you on any maintenance meds, and some prednisone, too, to keep you in remission? Others will have lots to say, I'm glad you found us, and it's so true that reading through all the posts and threads here, past and present, will go a long ways toward giving you an understanding of all this. I look forward to your updates. There are a couple others on here I know of in the Phoenix area and no doubt you will discover each other!
    Last edited by annekat; 10-01-2015 at 07:57 AM.
    Anne, dx'ed April 2011

  3. #3
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    Welcome to the "club", Treena!!

    I'll echo Anne's greeting and the question about bactrim. You're fortunate to be close to a Mayo Clinic in Phoenix. They have knowledgeable wegs doc's there. Hope you get to a sustainable remission soon. Good luck!!
    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

  4. #4
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    Hi Trena,
    I'm glad that you found this forum and that you are doing so well. You will never feel alone in your journey, with all the great members that we have here. There is always somebody to talk to and answer any questions you might have 24/7. Wishing you all the best.
    Jana


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


  5. #5
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    Quote Originally Posted by Trena View Post
    I live in Phoenix Arizona
    Trena,

    Sounds like you're doing incredibly well for just a few months after diagnosis. Don't get complacent, stay on top of if forever because Wegeners will jump back up when you're not looking.

    I think you joining makes three of us on this forum from Phoenix.

    Gary

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    I'm thinking there was a fourth from Phoenix but she didn't really stay in touch for long.... I could be wrong, though Don might know. Anyway, Gary and Don are both great forum members!
    Anne, dx'ed April 2011

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    Welcome again. Were you on Bactrim or some thing to try prevent PCP. That is a known risk when taking drugs to knock down or try control the Wegs. I get monthly pentamadine nebulizer treatment since I am allergic to sulfa and can't take Bactrim.

    Glad to hear you are doing well with your treatment.
    Knowledge is power! Wisdom is using it to make good decisions!

  8. #8
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    Wow...I'm impressed Annekat! You nailed it with knowing all the medication I was/am in. Yes, I started Cytoxan and prednisone along with several other meds back at the end of March. The Cytoxan worked great yet really lowered my immune system too much which then I ended up with pneumonia the doctors said. Yes, I am also still on Bactrim every day till the doctors tell me otherwise. I was so thankful that they could consider me in remission and then the doctors could concentrate on the pneumonia and then the maintenance medication for the Wegener's I needed.

    The medication which landed me back in the hospital was Sulfameth/Trimethoprim 800/160 mg with taking three tablets three times a day. I was still on oxygen 100% of the time, very weak and still having some kidney issues. The doctors just mentioned that it must've been just too much and my system couldn't handle it. I had two black outs back to back and within a 1/2 hour my doctor personally called me with my lab results and said that I needed to come in immediately. I had never had a black out and so I wasn't quite sure what happened and why I woke up on the floor, yet my doctor knew exactly what happened when I told him about it. Unfortunately, with one of my blackouts it happened in front of my daughter and I fell into the wall before hitting the floor and this really scared her. Thankfully my mother was also right there and was able to help me and comfort my daughter at the same time.

    I've learned some major lessons with listening to my body and communicating with my doctors immediately!!! It is my responsibility to communicate all issues with my doctors no matter how small I think it might be. Then it is up to my doctors to let me know what they want me to do.

    It it is comforting to me on the maintenance medication and knowing that in on the upswing at this point for today....one day at a time. I am still on Prednisone,meet they are trying to lower the dose for this...which I am thankful for. Not to be vein at all...I've dealt with hair loss, major swelling in my face and swelling in my legs/feet at times due to medication and I. Totally fine with that. Yet at some point, I am looking forward to being able to see myself again when I look in the mirror.

  9. #9
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    Thank you Jaha! I agree and I love that this is available 24/7. This is a journey that so many of us are on and it's wonderful to have such great support!

  10. #10
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    Hi Gary! It great to meet others that are in the Phoenix area! I have been treated at St. Joseph's hospital downtown and they have all been AMAZING there! The doctors have been incredible and so supportive. I have been at such peace during all of this because everyone has been so wonderful to my family and I.

    If if you don't mind me asking how long have you had Wegener's?

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