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Thread: A great doctor wants our help

  1. #1
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    Default A great doctor wants our help

    I met with Dr Alexandra Villa Forte at Cleveland Clinic yesterday for a check-up and rtx infusion. The infusion and check-up went well, but, as we talked, she asked me what she could do to be a better doctor for me (and fellow weggies). My immediate response was that Iím not the best person to ask. (Iím pretty low maintenance at this stage of my GPA journey and have been in a sustained remission for over seven years.) I think she deserves a fuller answer.

    A little background: She carries nearly a full patient load (full load is 60 appointments per week Ė I think). She is involved in research and helps the Vasculitis Foundation screen research proposals. Joyce Kulman (Executive Director of the Vasculitis Foundation) calls her frequently to ask questions and get good answers. Joyce would also like to have her on the Board, but Dr Alex is still thinking about how she would fit that in.

    As I thought about her question on the way home yesterday (traffic on I-71 wasnít too crazy until I got back to Columbus), I think you folks on this Forum can be a great help. So, think about your experience with GPA. What do you wish you had known then (at disease onset and following) that you know now? How did you gain that knowledge? What do you wish your GPA doc had done differently, more of, less of?

    Please post your thoughts here between now and October 1. Iíll summarize them and forward them to Dr Villa Forte.

    One idea Iím going to pass on to her is to log on to this Forum and read through the threads that pique her interest. Some of the experiences youíve shared here would be pretty enlightening to a good doctor.

    Thanks for your ideas!!
    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

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    Default Re: A great doctor wants our help

    If any of the several doctors I consulted before my diagnosis two years later had used the app Find a Zebra I could have save a lot of damage to my body like loss of hearing, balance, kidney damage etc. More doctors need to learn to consult with others when they can't figure out how to help a patient.

    It also takes awhile for a new patient to learn to recognize how they handle GPA and education and consultation is part of this learning process and this should be explained to the patient till they get a better handle of when to seek help and what various symptoms warrant concern.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: A great doctor wants our help

    Do they want honest opinions? Iíve only been a member for a short time but see many posts of Doctors pressing the vaccination and not looking into alternatives for people with rare and complicated situations. I keep seeing posts of no antibodies and flares from the vax, with doctors pushing for more. Iíll quote one of our fellow members, our immune systems are like dynamite and vaccines are blasting caps. Not telling anyone what to do, but alternatives or better preparation could keep us from having a FINAL answer to what happens if. Again Iím new to this but donít want any of us to needlessly suffer effects when the data for even regular individuals is scarce. Just my opinion and Iím not a doctor.

    I agree with DrZ about education and understanding. Itís a tough pill to swallow as it stands and not understanding can lead to chaos. Also a good bedside manner helps.
    Last edited by [email protected]$0N; 09-26-2021 at 06:18 AM.

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    Default Re: A great doctor wants our help

    What an opportunity! It sounds like you have an extraordinary doctor. My thoughts on GPA, I transferred to the leading expert Ė Rheumy in my state. I begged him to help me with my daily severe nose / ear issues, he said he could not help. Even after I explained my eye doctor diagnosed me and the ENT was clueless to GPA. I went to another ENT who told me to go the Rheumy for GPA issues with my nose. I then begged the Rheumy for help again even a referral that his other patients have success with. He could not or would not. This set me back and caused me much pain. (I now have saddle nose) My first recommendation is to help us find doctors that can help our specific issues. Not sure how to do this. 3 weeks ago, I called nearly 20 ENT doctors in my town asking if they had GPA experience. I think I found the right person. My second recommendation is with the vaccine issue with us RTX patients. I got very very sick after the 2nd shot before I started RTX. It was awful and terrifying. We need alternatives. I went on vasculitis fdn zoom call recently and a woman who takes weekly injections of RTX for many years, found an alternative effective choice, compassionate use of regeneron instead of the vaccine (she was tested and has zero antibodies after 2 vaccine shotes) and the employee of the vasculitis foundation shut her down, made her stop talking. Why? The woman was giving us steps to work with OUR Doctors to see if this choice was needed or realistic and they would not let her finish. I did reach out to her offline and found out more information for me to review.

    So I think we need 2 things 1) we need the proper medical help Ė it would be incredible to find experienced practitioners more easily: rheumatologists and other specialties that need SPECIFIC attn that relates to GPA. 2) Vaccine data and alternate choices to being as protected as possible without getting GPA sick by taking the vaccine if it is even possible.

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    Default Re: A great doctor wants our help

    Quote Originally Posted by KathyTPA View Post
    What an opportunity! It sounds like you have an extraordinary doctor. My thoughts on GPA, I transferred to the leading expert – Rheumy in my state. I begged him to help me with my daily severe nose / ear issues, he said he could not help. Even after I explained my eye doctor diagnosed me and the ENT was clueless to GPA. I went to another ENT who told me to go the Rheumy for GPA issues with my nose. I then begged the Rheumy for help again even a referral that his other patients have success with. He could not or would not. This set me back and caused me much pain. (I now have saddle nose) My first recommendation is to help us find doctors that can help our specific issues. Not sure how to do this. 3 weeks ago, I called nearly 20 ENT doctors in my town asking if they had GPA experience. I think I found the right person. My second recommendation is with the vaccine issue with us RTX patients. I got very very sick after the 2nd shot before I started RTX. It was awful and terrifying. We need alternatives. I went on vasculitis fdn zoom call recently and a woman who takes weekly injections of RTX for many years, found an alternative effective choice, compassionate use of regeneron instead of the vaccine (she was tested and has zero antibodies after 2 vaccine shotes) and the employee of the vasculitis foundation shut her down, made her stop talking. Why? The woman was giving us steps to work with OUR Doctors to see if this choice was needed or realistic and they would not let her finish. I did reach out to her offline and found out more information for me to review.

    So I think we need 2 things 1) we need the proper medical help – it would be incredible to find experienced practitioners more easily: rheumatologists and other specialties that need SPECIFIC attn that relates to GPA. 2) Vaccine data and alternate choices to being as protected as possible without getting GPA sick by taking the vaccine if it is even possible.
    I will say some doctors unwillingness to look into other options than the vax is causing many, not just in wegs world, to lose faith and trust. Knowing our conditions and the ramifications I find it hard to swallow that they want to push more shots of something that can trigger a flare while also a gamble on antibodies. For a couple reasons, I was hesitant about even getting the Regeneron. The difference was forcing my body to produce something using the same weapon, immune system, to work harder or to have the needed tools injected directly into your body. Spares the immune system the fight. my opinion and I'm not a doctor.

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    Default Re: A great doctor wants our help

    Hi all, Iím new still. I will do my intro shortly in the correct spot. However, I felt the need to chime in. This idea for Dr. VF is terrific! For myself, I wish I was given a forewarning of the muscle and joint pain. It wasnít discussed truly. I think even though this disease has a broad range of symptoms and we are all unique, I believe it would have been helpful to hear some of that from my Rheumy about expectations. Also, maybe pushing the patient to find forums and groupsÖ they are how I am living and learning about myself.

    Hope this helps!
    Love and light,
    Ashley


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    Default Re: A great doctor wants our help

    I know I am late to this conversation. I will add that I have a rheumatologist and a pulmonologist from the same hospital group that ďspeakĒ about my case to each other for my treatment. My problem is they never agree. I was diagnosed with Covid last November and developed pneumonia. This was the first time I have had pneumonia. In March I again developed pneumonia but it was inflammatory-so nothing grew. Rheumatology insisted it was covid related and let me sufferin June I was placed in hospital and a bronchoscope came back positive for Covid. Every pulmonary Dr insisted it was left over from November. Nothing else grew. Again my rheumatologist insisted it was covid and let me go on with worsening pneumonia. Finally pulmonology changed her mind when my PFT was half of what it should be, I developed atelectasis and micro hemorrhaging in my lungs and worsening pneumonia. Then she was like, Iím worried that the damage is permanent, we need to do Rituxin as quickly as possible. I have been suffering almost 7 months with pneumonia. My career is ruined. All because she didnít want it to be GPA? & didnít want pulmonary to be right?
    Sorry. Iím bitter
    Natty


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    Default Re: A great doctor wants our help

    Sorry to hear about your poor care. Any chance you can seek better care elsewhere?
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: A great doctor wants our help

    This is horrible. Your life was put at risk for someone's ego. Is it possible to switch care? Are you in the states? I am so sorry your livelihood has been disrupted. I donít know what kind of work you do, but hope you can start over. Will be praying for you to get Rituxin ASAP.

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    Default Re: A great doctor wants our help

    Quote Originally Posted by NatriceRomeo View Post
    I know I am late to this conversation. I will add that I have a rheumatologist and a pulmonologist from the same hospital group that ďspeakĒ about my case to each other for my treatment. My problem is they never agree. I was diagnosed with Covid last November and developed pneumonia. This was the first time I have had pneumonia. In March I again developed pneumonia but it was inflammatory-so nothing grew. Rheumatology insisted it was covid related and let me sufferin June I was placed in hospital and a bronchoscope came back positive for Covid. Every pulmonary Dr insisted it was left over from November. Nothing else grew. Again my rheumatologist insisted it was covid and let me go on with worsening pneumonia. Finally pulmonology changed her mind when my PFT was half of what it should be, I developed atelectasis and micro hemorrhaging in my lungs and worsening pneumonia. Then she was like, Iím worried that the damage is permanent, we need to do Rituxin as quickly as possible. I have been suffering almost 7 months with pneumonia. My career is ruined. All because she didnít want it to be GPA? & didnít want pulmonary to be right?
    Sorry. Iím bitter
    Natty


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    Natty,

    I'm sorry for what you are going through. Isn't that a good malpractice case?
    I understand about Doctors egos. I was fired by my first local Rheumatologist because I went to the Cleveland Clinic to consult with Dr. VF and came back to her with recommendations. And I actually liked her. I think she saved my life by diagnosing quickly and being aggressive with treatment. I even wrote comments on various surveys to let her medical group know what a good doctor she was. Well, that was, until her ego got in the way. It turns out her choice of treatment was not far off from what Dr. VF had suggested but she did not like receiving recommendations.

    With this rare disease, Drs. need to understand that it is better for everyone (doctors and patients) to collaborate.
    If they did more of it, they would save more lives.
    Communication and sharing of information between doctors is crucial for this disease. if its not there, you (the patient) have to be the middle person constantly bringing information and data back and forth between them. But you are also the sick person. I feel that has become my full-time job while I am on medical leave. Thank God to doctors portals now because you can now send messages via their porta and don't have to be on the phone leaving messages and talking to another person to relay your message to the doctor. Because how some healthcare systems and doctor practices work, collaboration between doctors is not encouraged. If you are lucky enough to have doctors in the same practice or healthcare system, that helps tremendously but you may not get the best specialists you can get for what you need. Something to keep in mind for those who are newly diagnosed and find themselves looking for specialists to treat the various medical problems that could arise when you have GPA.
    And if something does not feel right with your treatment or they can't find answers, keep pushing because chances are, something is not right. Seek other doctors who might have the answers.

    I honestly hope things get better for you. Take care!
    Jeannette

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