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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. Take Control of Your Illness. You may think you’re helpless, but you’re not. Take control of your life back with a combination of information and attitude. Be a part of every decision about your treatment. Resist the urge to leave it all in your doctor’s hands.
2. Insist on Options. Forget about second opinions. Look instead for second options. There are no absolutes in medicine, no inevitabilities. There are multiple solutions to every problem. You just have to find them. Don’t be fraid of choices; embrace them.
3. Find the Right Doctor. Not all doctors are created equal. When you’re seriously ill, it’s worth the extra effort to find the best one for your condition. It can make the difference, literally, between life and death.
4. Build aPartnership with Your Doctor. A true partnership means there are special responsibilities on both sides. Your part is to be informed about your illness so you can ask questions—you can never ask too many questions. Your doctor’s part is to answer them all, fully and patiently.
5. Recognize That All Medical Decisions Are Trade-offs. Again, there are no right answers. Every decision regarding medical treatments involves weighing costs against benefits. To strike the right balance for you (everybody’s balance is different) get all the information you can, then look carefully inside yourself and decide what really matters.
6. Sustain aClaim to Life. A good attitude—call it optimism or “fighting spirit” or whatever isn’t enough, no matter how positive. You have to do something. A will to live has to be accompanied by a commitment to living: join a support group, make plans, set goals; “renew your membership in life.”
7. Find an Advocate (Or Be Your Own). In a managed care environment, getting the best care can be a struggle. You can end up fighting your doctor as well as your illness. If you haven’t got enough fight to go around, enlist an advocate to do the fighting for you.
8. Subdue the Enemy Within. Sooner or later, you’ll hear a voice question: “Why Me?” Learn to recognize self-pity and resist it. Questions whatever bothers you; don’t let this one. Not now. Another feeling to resist: guilt. Yes, loved ones are going through hell, but it’s not your fault.
9. Build a Support Network. You absolutely cannot get through this alone. You have to depend on people. Family, friends, caregivers, support groups,  strangers, it doesn’t matter, as long as it’s somebody. But don’t expect more of people than is reasonable. Don’t expect family or friends to change just because you’re sick. Don’t expect yourself to change.
10. Don’t Let the Disease—Or the Treatment—Change Who You Are.  Don’t let the “I’m Still Here!” syndrome get the better of you. Denial and surrender are bad, but survival at any cost is also dangerous, just in a different way. If the disease, or the treatment, changes who you are, then you’ve lost the battle anyway.
11. Know When to Draw the Line. There’s a line beyond which the price of survival is just too high, a line between what is worth fighting for, and what is not. Thresholds of pain vary, as well as thresholds of fear and uncertainty. Doctors often draw this line for patients; draw it for yourself.
12. Never Say Never. Everybody reacts to disease differently. Every body reacts to drugs and treatment differently. Every doctor has had patients who defied all the medical textbooks and prognoses. They’ve all seen “hopeless” cases turn around. For all the advancements in medical knowledge, the human body remains wondrous strange-- and full of surprises.

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..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 health care... ”
   • “ 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 general information on Alpha1
               the same prevention of infection guidelines/recommendations
               the same treatment recommendations/guidelines for Prolastin and other meds
               the same info and recommendations on lung rehab programs.”
   • “Hmmmmmmmm... I would LIKE to have been dxd LOTS sooner.”
   • I would like to see more MDs 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 25, 2005