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Note:   Readers should always consult their physicians before taking any action (or inaction) which may affect their health or involve decision making.

1. What has been your relationships with physicians?
2. What was the most helpful doctor’s visit you’ve had?
3. What was the most wasted one (doctor’s visit)?
4. What would or did cause you to change physicians?
5. What would or did cause you to change physicians?
6. Did it help (changing physicians)?
7. What would you most like from the physicians you are seeing now?
8. Have you ever gone outside of traditional medicine for help with Alpha-1?
9. What would you change?
10. If you are a caregiver, what opinion does your child or the adult alpha have about their physicians?

1. What has been your relationships with physicians?
   
   Answers were very broad. Many have a variety of doctors from which to choose for their health care. Others have a 500 mile radius just to get to a pulmonary specialist. Many have very good relationships with their doctors and describe them in terms of proactive, listening, caring, compassionate, and highly trained. Respondents with good relationships felt that there was a sense of mutual respect with their doctors. Some felt that their doctors were highly trained with a variety of knowledge and background.
   
   Those less impressed with their physicians found their doctors to be lousy, bureaucratic, technocratic, patronizing, and condescending.Some felt that their doctor visits were useless and a waste of time. They felt doctors were uninformed, and more useful information sometimes came from the Internet and newspaper columns. Doctors sometimes appeared too busy to take an interest in the patients and their condition. Comments regarding physicians’ staff included a lack of privacy and less than caring attitude by some. Some physicians appeared to be negligent in their care.
   
   One provided a checklist in choosing a physician. Points included:
        • Choose doctors with similar belief systems.
   
        • Interview with regard to use of prescription medicines.
   
        • Ask questions:
   
        • How long are patients kept waiting for appointment scheduling and office visits?
   
        • Is there a consistent wait of more than 15-30 minutes for an appointment or over two weeks out in scheduling?
   
        • How well does he/she communicate? Are they willing to answer all questions?
   
2. What was the most helpful doctor’s visit you’ve had?
   
   It was a doctor’s willingness to discuss and provide an explanation of Alpha-1 that helped many. Accuracy, a thorough background in Alpha-1, listening, and a willingness to discuss issues related to Alpha-1 were also listed as giving the most benefit. An accurate diagnosis was after years of waiting was listed by one.
   
   Someone described their most helpful doctor’s visit this way:
   
   It was a “medical resident who took the time to explain Alpha-1 to me. He also bothered
   to explain that I would have to be on oxygen and have other lifestyle changes that no one had mentioned before. I’d been told over and over that I had Alpha-1, but XXXX told me what that meant. He did not seem to be a nut. He did not see death as the main thing about me though I have a terminal illness. He did not stare at me with pity and morbid fascination, etc, because he could actually see an ill person as an individual anyway, even if they are middle-aged and have dirty hair (as I was in the hospital and he was a quite young
   person.)”
   
3. What was the most wasted one (doctor’s visit)?
   
   The wrong diagnosis and treatment along with poor advice frustrated many. Emergency Room delays and lack of communication by staff made others question the usefulness of their visits. Others felt that no visit to the doctor was a wasted trip.
   
4. What did you do about it (wasted doctor visit)?
   
   Many have fired their doctors while others have stopped going for checkups. Others try not to get sick when their doctor is out of town. They are afraid of having to deal with someone unfamiliar with them. Some filed formal complaints, and others worked to find a new specialist.
   
5. What would or did cause you to change physicians?
   
   Some were forced to find new physicians when their first ones relocated. Others found new doctors because of confidentiality violations, travel distance, rudeness, disrespect, and poor communication. A need for advocacy and faith in physicians was also mentioned.
   
6. Did it help (changing physicians)?
   
   Most were relieved to have new doctors. One mentioned it being a blessing in disguise. Another said, “I was impressed by his crisp, upbeat tone, forthright, caring communication and sense of total self-confidence.” Mention was made of a sense of hope and the advantages of a “honeymoon period” with new doctors. Still there were those that didn’t
   feel so lucky, since the new doctor was in the same building as the old.
   
7. What would you most like from the physicians you are seeing now?
   
   “Treat me as a person and not a number. And to care.” “That they continue doing what they’re doing to ensure my improved health.”
   
   “I would like a doctor that has dealt with A1AD and knows the best way to treat so I can live the longest with the highest quality life possible.” “Willingness to be a patient advocate; willingness to side with the patient.”
   
   “That I have a sense of their total commitment to my overcoming the effects of this disorder.”
   
   “A cure” :)
   
   “I wish I had one doctor overseeing the whole mess.”
   
   “Truth and honesty, and the caring.”
   
   “ The one thing that I want the most is to be an active part of my treatment team and have a vote in medical choices.”
   
   “ For him to get over his territoriality.”
   
   “ Would like a better transplant coordinator though.”
   
   “Sometimes I like them to share what they’re thinking.”
   
   “The truth, with out predictions.”
   
   “The physicians I am seeing now, . . . I am quite satisfied with them. They are caring and helpful.”
   
8. Have you ever gone outside of traditional medicine for help with Alpha-1?
   
   Yoga, reiki, therapeutic massage, acupuncture, herbal formulas, body-mind connection,
   and balance have been tried. Someone explained alternative medicine this way: “When
   the regular medical community has so little to offer, you become desperate enough to wonder.”
   
9. What would you change?
   
        • “The awareness of this illness to physicians and people in general.”
   
        • “I have changed, everything in my life has changed. I would like to change it back.”
   
        • “I would encourage doctors to stop going out to dinner so much with drug
   companies.”
   
        • “Also, most docs understand if you ask them not to write something down on your files . . . and I think that this request should be understood and respected more widely.”
   
        • “ That Western Medicine be more inclusive of other medical disciplines; that more cross-platform research be done by our medical doctors” “My parents. If only one had been black I’d not be in this state (plus I’d have probably played better harmonica.” :)
   
        • “For the past I would change the way I came to learn about the severity of this disorder. . . . For the present I wish the insurance companies had less say in my
   healthcare.”
   
        • “The only thing I would like to change, but of course that is now an impossibility, is
   that I would have had good, knowledgeable doctors years ago that knew something about Alpha-1 and would have given me encouragement, rather than a death sentence from the very beginning.”
   
        • “I would have every pulmonologist be supplied with the same:
   
             1. general information on Alpha1
   
             2. prevention of infection guidelines/recommendations
   
             3. treatment recommendations/guidelines for Prolastin and other meds
   
             4. info and recommendations on lung rehab programs
   
        • “Hmmmmmmmm... I would LIKE to have been dxd LOTS sooner.”
   
        • “I would like to see more md’s listening instead of telling.”
   
        • “Mostly, I would like the gene therapy research and testing to be allowed to continue, and for organ donation to be the norm, not the exception.”
   
        • And lastly, I would probably like to AT LEAST have had a Viking name, if I couldn’t change my pick of ancestors.” ;0)
   
        • “Nothing. I am doing great, and I love my Drs., and have much confidence in them.”
   
        • “I would change the way the clinic is scheduled, so it didn’t require waiting around for hours with young child and impatient spouse. I would also minimize prep times for procedures to only what was needed instead of two or three times what is actually needed for fasting, fluids, etc. I’m all for bringing the first round of sedation to the patient’s room rather than having them taking kicking and screaming down to another floor for a procedure.”
   
        • “There is a good line of communication between the two of them (specialists).”
   
10. If you are a caregiver, what opinion does your child or the adult alpha have about their physicians?
    
         • “At this point, XXXXX is fine with all his physicians-although because he is five-he can’t stop wiggling or be as cooperative when being examined as would be desired.”
    
         • “I can answer number 10 since I am a caregiver. My husband’s Dr. sometimes does not have a good bedside manner.”

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Updated May 16, 2005