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Thread: New Member Introduction 😉

  1. #21
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    Oct 2015
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    Phoenix AZ
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    I'm so sorry hear about your VA problem...that must be so frustrating! My rheumatologist that I see is Dr. Colceriu (623-406-2323) and he is located at 500 E. Thomas Suite 900-B (right next to St. Joseph's hospital and uses the same parking lot). Dr. Colceriu is at the hospital every day early in the morning or in the afternoon and then walks over to his office to see his patients. I appreciate how he works as a a part of the team of doctors that treat me and they discuss issues as they get test results in or in between my appointments for the next step of my treatment. Dr. Colceriu is the one that is very familiar with this disease, has several patients with this and has been so I formative and has discussed each step with me along the way. Since I have had kidney and lung issues....and in ICU with pneumonia he has other doctors that he worked with to treat me on what was most important at that moment (ex: the pneumonia trumped the Wegener's at that moment and I had to stop chemotherapy). I go in for weekly blood tests and all the doctors get the weekly results and they notify me if there is a problem...which happened once after the pneumonia and I came home. My pulmonary doctor ( Dr. Feldman) personally called me and told me that he was immediately admitting me to ICU and I needed to head right down to the hospital again due to an issue with the medication (once I got there Dr. Colceriu was also informed immediately and was already working with Dr. Feldman on my case). I greatly appreciate how the doctors are on top of everything and work together for what is best for me. They have also been very calm and honest in addressing every issue to me during this crazy journey.

    If you are able to get outside help I would HIGHLY recommend Dr. Colceriu (rheumatologist) for your Wegener's and also Dr. Feldman if you ever need a pulmonary specialist. Dr. Feldman was also in my room one time and the nurses were having to call the "swat team" again (their name for it....if they have problems getting a IV they have these people with ultrasounds to help and can get veins that nurses sometimes have problems with). Anyway, my veins in my arm were shot and Dr. Feldman just took over and got it the first try...in my leg right above my foot...I was very impressed!

    Yes, Surprise is to the west a little, yet I honestly LOVE it out here. We are close enough to Phoenix (about a 45 minute drive to my doctor downtown) and yet it still has a cozy feel. We have everything we need out here and just a hop skip and a jump to the 303, 101 and I-10 if we need to get anywhere else.

    Good luck is you can switch to Dt. Colceriu!

  2. #22
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    Jul 2015
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    Quote Originally Posted by Trena View Post
    My rheumatologist that I see is Dr. Colceriu

    Yes, Surprise is to the west a little, yet I honestly LOVE it out here.
    Thanks for the doctor info, especially that level of detail about why he's good. Sounds like the PCP & rheumatologist team I had. Others not so good.

    Uhm, Surprise? Seriously? That's way out there but I guess in the last few years there are finally freeways. And it's a nice quiet place.

  3. #23
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    Sep 2015
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    Ottawa, ON, Canada
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    Hi Trena,

    The neuropathy started a few months before I was diagnosed. Unlike many members of this forum, I don't see a rheumatologist - my nephrologist is my main physician. She told me that during my treatment phase I would probably see some improvement but that there was no guarantee that it would go away. She suggested that if it continued after I was stable, she would refer me to a neurologist for further investigation. Luckily the neurophy is gone in my left foot but I still have some in my right foot but it has lessened significantly. When it was at its worst, taking a shower was hell, the water hitting my feet was torture and when I walked in the cold and snow my feet really felt the cold!

    About the meds - I also had trouble keeping track of my meds (couldn't concentrate!), but after several months you will know more about medication then you want to (side effects, dosages, refills, etc.)

    I also feel like a sponge!!

  4. #24
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    Hi Erin,

    its encouraging to to hear that your neuropathy has gotten better! I am able to drive (which I am so extremely thankful for), yet it's really difficult dealing with the neuropathy. I have moved from a 2 story house to a 1 story and that have been extremely helpful! Yet, it's a constant pain that is difficult to deal with. I've been told that it becomes almost secondary and something that I will learn to just deal with....I'm still looking forward to that! Typing is also difficult since I have it in half of my left hand.

    Thanks for for your encouragement with the meds also! I ended up writing everything down and carry it in my purse at all times. That's already be helpful since I had to get my eyes checked due to vision loss and I had all the information right there with me..nice!

    So, how are you in your recovery process?

  5. #25
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    Sep 2015
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    Ottawa, ON, Canada
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    Hi Trena,

    This month is my one year anniversary!! Docs are very happy with my progress. My sinuses and hearing are now stable. My lungs took a bit longer to stabilized - had a nasty infection in Jan but now I'm off all meds for my lung expect Septra (an antibiotic to prevent upper respiratory infection). I have about 50% kidney function and my anemia is still a factor. Although my fatigue is an issue, I do think I'm making progress. I'm doing a gradual return to work and I'm now at 3 days/wk. My nephrologist thinks the max I can work is 4 days/wk.

    I have 3 kids (19, 14 and 13) so they are older and understand when I am not 100% (or 50%!!!) and they are helping more and I am delegating a lot more than I use to. My husband also has a kidney disease but he has been stable for 5 years but he also tires easily.

    Sometime I miss the active life I had but I've learned to enjoy the good days - apple picking with my family, cycling (even though I can't cycle like a use to...), lunch with friends, walks with my dog... Definitely the "new normal" takes some getting use to but with good support and good medical care it is definitely possible. The members here are very inspiring and knowledgeable. You too will get there.

    Btw - really like your family picture - your kids are so cute!

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