PATIENT NEEDS

• Learning (Last update 06/02/10
  • Patients and care-givers must make efforts to learn about the disease, the treatment options, and the side effects to be able to make  good judgments and decisions.
    • Knowing about your disease and treatments can calm one's anxieties.
  • Click here to view an autoimmune vasculitis reading list for patients and others.
• Advocate
  • If possible have a friend or family member as an advocate to help with the complexity of dealing with a serious disease.
    • In the presence of an advocate, your physician may spend more time discussing your case more thoroughly and allow more questions than if you were alone.
    • When one is ill, he or she is hardly in a position to ask the right questions, nor to understand nor remember the answers.
    • Your advocate should help you prepare a list of questions before each appointment.
    • If possible, take an advocate with you to every appointment to take notes, help ask questions, write down answers, and remember the details that later you will have already forgotten.
      • If without accompaniment, your physician might permit audio recording of appointments
      • Before leaving the office, ask for a copy of the medical  report be mailed to you.
      • An advocate can be helpful in buffering the vasculitis patient from unhelpful family and friends, and perhaps help mend strained relationships.
    • Investigate whether your health insurance company will provide you with a patient advocate when dealing with hospitals.
      • Some hospitals have  patient advocates on staff.  In some cases a hospital social worker may be of assistance.
    • An advocate needs to be aware of what the patient is experiencing both physically and emotionally.
      • Pain is often difficult for patients and for advocates.
      • Click here to view a file with information on dealing with persons in pain.
    • Many AV patients have clinical depression at times.  An  advocate can help identify the depression so it can be treated if needed.
      • Anti-depressants may be suitable and effective.
      • If one type isn't, then have your physician prescribe different ones and experiment with dosages until you find one that works.
    • Students in school need an advocate.
      • Parents and  teachers need to be advocates for the child being treated with chemotherapy for cancer or vasculitis
        • The medications used to treat AVs cause many symptoms that interfere with learning.
        • The students' parents need to work with school personnel to get a mutual understanding of the difficulties a student faces and the need for special treatment, a written plan that the school and parents agree to.
      • Click here to download a Word tri-fold brochure on "Chemotherapy And Education", prepared by parents, students and adults dealing with an autoimmune vasculitis.
      • Click here to view guideline for students with vasculitis.
• Questions
• ALL MEDICAL QUESTIONS, SYMPTOMS, CONCERNS AND PROBLEMS SHOULD BE DIRECTED TO APROPRIATE LICENSED MEDICAL PROFESSIONALS.
• Click Here to see a list of questions for patients and carers to consider asking physicians
• The answers may help a patient understand his disease and treatments better.
• Do NOT hand the list to your physician, but only select 5 or 10 appropriate for the next appointment.
• Answers to many concerns can be obtained from members of email groups dedicated to supporting vasculitis patients and families.
• No medical decisions should be made on the basis of answers from patients or support groups unless one's physician(s) agree(s) with the suggested change(s) or course(s) of action.
• Records
• Click here to see what records you must carry on your person at all times.
• Records required at home are histories of medications, surgeries, test results, imaging reports, nutritional supplements, accidents, etc.
• Click here to learn why you should have copies of all your medical records.
• Document everything
  • You or your advocate should keep those records up to date, organized, and complete.
    • Date and time should be recorded with every entry.
• In some countries it may be the physician's option to release  medical records to you.
• In the U.S., you probably have a legal right to all medical records.
• You may be charged for the cost of making copies.
• When registering for laboratory or imaging tests, request copies of reports be mailed or faxed to you.
• Organize records
• Use binders and logs to organize your records.
• Save appointment dates on calendars or digitally so you can refer back if needed.
• Prepare summaries for when you visit new physicians of medical records.
• See the Johns Hopkins Forms web page for forms for a both Medications Form and a Medical Contact form at  http://vasculitis.med.jhu.edu/resources/forms.htm
• If you have one, consider using your computer for record keeping, both text and spreadsheets.
• See http://www.beatcfsandfms.org/html/GeorgesOrganization.html for info on forms and record.
• Be sure to make back-up copies of computer files from time to time.
• Always request a copy of the physician's appointment record be mailed to you when logging in at the office.
• Radiology films are often destroyed after some years. 
• In order to have a complete radiograph history, order a copy of the film at the time of the tests.
• Ask about the length of time that computerized images are kept on file.  If a limited time, request a CD or DVD of the computerized record, or a film copy.
• The Medical Information Bureau (MIB) is a centralized repository and clearing house for medical reports from insurance companies.
• Insurance companies use the MIB in making decisions about coverages.
• When information is incorrect, follow the MIB procedures to get the information corrected.
• Click here to view information on how to obtain your record from the MIB.
• Disability
• Click here for information on filing for disability status in the U.S.A.
• Click here for a list of helpful web page addresses related to filing for disability.

THIS SITE

• Intent
  • To assist vasculitis patients in getting early diagnoses, effective treatments, and to advise of patient, organization, and scientific resources concerning vasculitis.
• Sources Used
  • The following information is derived from a variety of sources over some ten+ years and is not to be considered as medical advice, but merely the opinions or experiences or findings of the writer who is not a physician and has no medical training.
  • Much comes from Medline abstracts and medical journal articles on vasculitis.  Some is from autoimmune vasculitis patients and carers, some from newsgroups,  internet web pages, etc. that also deal with vasculitis.
  • The compiler has attempted to use only recent valid medical information regarding vasculitis, but cannot guarantee the validity nor the currency in every case
• Limitations
  • No medical decisions should be made on the basis of information on this web page or on associated linked documents and web pages unless those are from a recognized medical professional or professional medical publication.
  • Limits to this web page concerning vasculitis:
    • The author/compiler/editor of this web page and related pages has had NO medical training.
    • Only autoimmune vasculitides will be considered, not hypersensitivity vasculitis nor vasculitis as a result of an allergic reaction to medication or vaccine..
    • Most sections apply to most autoimmune vasculitides.
      • One refers specifically to Wegener’s granulomatosis.
• Terminology
  • Some abbreviations and equivalencies are:
    • Hereafter, “autoimmune vasculitis” may be abbreviated “AV” or “AVs” for plural.
    • The term “Prednisone” is sometimes used where it or a similar glucocorticoid might be prescribed to treat vasculitis.
    • “Immunosuppressives” used to  treat vasculitis are sometimes abbreviated “ISs”.
• Updates
  • This update was on June 1, 2009 and is a complete rewrite of the former web page at http://www.wegenersgranulomatosis.net that also dealt with vasculitis.
• Files & links – Vasculitis related.
  • Click here to view a web page listing all the links and files from this page.
• Tables & Figures – Vasculitis related
  • Click here to view a listing of the tables and figures in this web page.
• Disclaimer
  • ALL MEDICAL QUESTIONS, SYMPTOMS, CONCERNS AND PROBLEMS SHOULD BE DIRECTED TO APROPRIATE LICENSED MEDICAL PROFESSIONALS.
  • The writer/editor/compiler does not vouch for the accuracy, completeness, nor applicability of the information included on this site to any person, whether a vasculitis patient or otherwise. 

This website and all content - © Copyright 2009, Bruce Macdonald. All Rights Reserved.
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Compilations, Observations & Suggestions by a Vasculitis Patient This web page hosted courtesy of Andrew MacLean at www.andrewmaclean.com Please use the SITE PLAN for advanced navigation if slide-out menus do not appear.

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