Pete
12-19-2013, 04:55 PM
I've been thinking a bit about what I've learned about living with WG/GPA since I was diagnosed almost three years ago. I'll admit that I feel fortunate to be able to lead a fairly normal life style. I've had to make a few adjustments financially, physically, and mentally, but so far, everything is manageable.
What I've done is compile some of my thoughts about living with WG/GPA. I've also shared these with my wife who is the leader of my support system for her input. I did tone it down a little bit because I was using a very imperative, authoritarian tone in earlier drafts. The thoughts that contain statements of what we need to do started out as "must dos".
After you've reviewed these thoughts, please add your own. Ultimately, what I'd like to see is for our collaborative effort to be posted on this forum where first-time visitors will find it easily. I have a reasonably thick skin, and I'm sure I've probably overlooked a few things. After all, this is based mainly on my personal experience and what I've learned from many of you.
Thanks!
1. You need to be actively involved in your health care. You are the case manager of a team of doctors who may practice in different hospitals in different cities. You need to make sure that your doctors can (and do) communicate with one another about your case. You need to make sure that all of your doctors can see your entire medical record at any time. (Sign the releases and make sure they are up to date.)
2. Do not worry about your doctor’s feelings when asking about second opinions or specialist referrals. A doctor’s reluctance to advise regarding second opinions or referrals should be a warning signal of confidence and/or competence. Trusting your doctor is of paramount importance. At a minimum, make sure your primary WG/GPA doctor consults with a nationally or internationally recognized vasculitis-WG/GPA specialist (VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)). If geography and/or finances permit, establish a relationship with a vasculitis specialist at a recognized facility near you.
3. When you see your doctor for a routine appointment, take a written list of questions and concerns with you. Make sure you get everything addressed before you conclude the appointment.
4. You need to actively strive for a high quality of life. You can’t let minor aches and pains stop you. You may have to stop when you’re really sick and fatigued to the point where you just can’t push anymore. Then, you must rest, take your prescribed meds, and wait until you feel better. Patience is a virtue in this case. You probably won’t be back to your “new normal” overnight.
5. You need a support system. Your life will probably be a bit different (read “limited”) following diagnosis. If you’re married, your spouse should step up (they promised to love you during sickness and health). If not, perhaps your kids, your significant other, other family members, or good friends can be encouraged to help you. You and your doctors need to educate them about what to expect from the disease going forward (Having them read postings on http://www.wegeners-granulomatosis.com/forum/ or the Vasculitis Foundation’s Facebook page are good information sources about people who are experiencing WG/GPA.). They can also help you watch out for symptoms. They may need to become your caregiver and/or gatekeeper when you’re debilitated.
6. WG/GPA is an insidious disease. What you think you’ve got isn’t necessarily what you really have. Aches and pains that many people ascribe to aging or over exertion may be the subtle signs that the disease is becoming active again. Be especially aware of joint pain, chronic coughs (productive or not), ear issues, sinus issues, night sweats (especially those that soak through your bedclothes), and urinary symptoms (burning, pain, or visible blood in urine). If the symptoms persist for more than a few days or are very pronounced at onset, a precautionary call to your doctor is prudent. It’s better to be safe than sorry! Remember, just because you have WG/GPA doesn’t mean you also don’t have something else.
7. You must avoid people who are contagiously ill – especially when your immune system is suppressed as when on rituximab or when on induction therapy with other drugs. Your support system may need to be your gatekeeper and explainer in such situations.
8. You must hydrate. This allows the kidneys to flush the metabolites of meds and other waste products from your body more efficiently. It also minimizes the risk of worsening kidney involvement or bladder issues. If you don’t like the taste of your drinking water, add a little (maybe an ounce) natural fruit juice (a squeeze of lemon or a bit of cranberry juice) to it. It will taste better and make keeping hydrated easier.
9. You need to manage what you eat. More fresh produce and less processed sugar and starch are better. Eat a balanced diet that’s within your lifestyle (omnivore, vegetarian, or vegan). It’s OK to have the occasional sweet or bread, just don’t overdo. It’s hard enough to keep your weight under control when on high dose prednisone (some authorities define high dose as more than 10 mg/day). Don’t make it more difficult by telling yourself that you’ll do better tomorrow. It’s amazing how quickly you can pack on the pounds…
10. You should keep a journal of how you feel – symptoms, exercise, diet, activities, etc. The journal can provide clues your doctors may use when deciding whether or not you’re flaring.
11. Pay attention to drug side effects and interactions. Some of the drugs you take may work at cross purposes. Ask your doctor what you’re likely to experience on any given drug. (However, remember that the disclaimers about side effects were written by attorneys whose job is to cover their clients’ – drug manufacturers – posteriors. They will always paint the worst possible scenario. You will most likely experience nothing, or something much milder.) Also, make sure that your doctors know about all drugs and supplements (multi-vitamins, dietary supplements, herbal supplements, etc.) that you’re taking. They may interact adversely with the drugs you’re taking for WG/GPA. You should keep a current list of all your medications on your person while traveling just in case an emergency arises.
12. While striving to get completely off prednisone is a good thing in most cases, you may have to stop your taper at the point where symptoms reappear and go back to the dosage where you were asymptomatic. Hopefully, this dosage is under 5 mg/day. (Your adrenal glands may not recover their full ability to produce the body’s equivalent of prednisone.)
13. If you are on methotrexate or any other immunosuppressants that are toxic to your liver, alcohol is generally to be completely excluded or taken only in the greatest moderation. Perhaps a beer or glass of wine once a month might be OK. There are some good non-alcoholic (no more than 0.5% alcohol by volume) beers available. Wine without alcohol is just grape juice, so if you like a dry, full-bodied wine, you’re out of luck. Liquor should be avoided altogether as its alcohol content per unit of volume is much more concentrated.
14. Take your meds, follow your doctors’ instructions, and live your life to the fullest extent possible.
I hope you find these thoughts helpful. Please feel free to add your ideas as well.
Good luck and better health!!
What I've done is compile some of my thoughts about living with WG/GPA. I've also shared these with my wife who is the leader of my support system for her input. I did tone it down a little bit because I was using a very imperative, authoritarian tone in earlier drafts. The thoughts that contain statements of what we need to do started out as "must dos".
After you've reviewed these thoughts, please add your own. Ultimately, what I'd like to see is for our collaborative effort to be posted on this forum where first-time visitors will find it easily. I have a reasonably thick skin, and I'm sure I've probably overlooked a few things. After all, this is based mainly on my personal experience and what I've learned from many of you.
Thanks!
1. You need to be actively involved in your health care. You are the case manager of a team of doctors who may practice in different hospitals in different cities. You need to make sure that your doctors can (and do) communicate with one another about your case. You need to make sure that all of your doctors can see your entire medical record at any time. (Sign the releases and make sure they are up to date.)
2. Do not worry about your doctor’s feelings when asking about second opinions or specialist referrals. A doctor’s reluctance to advise regarding second opinions or referrals should be a warning signal of confidence and/or competence. Trusting your doctor is of paramount importance. At a minimum, make sure your primary WG/GPA doctor consults with a nationally or internationally recognized vasculitis-WG/GPA specialist (VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)). If geography and/or finances permit, establish a relationship with a vasculitis specialist at a recognized facility near you.
3. When you see your doctor for a routine appointment, take a written list of questions and concerns with you. Make sure you get everything addressed before you conclude the appointment.
4. You need to actively strive for a high quality of life. You can’t let minor aches and pains stop you. You may have to stop when you’re really sick and fatigued to the point where you just can’t push anymore. Then, you must rest, take your prescribed meds, and wait until you feel better. Patience is a virtue in this case. You probably won’t be back to your “new normal” overnight.
5. You need a support system. Your life will probably be a bit different (read “limited”) following diagnosis. If you’re married, your spouse should step up (they promised to love you during sickness and health). If not, perhaps your kids, your significant other, other family members, or good friends can be encouraged to help you. You and your doctors need to educate them about what to expect from the disease going forward (Having them read postings on http://www.wegeners-granulomatosis.com/forum/ or the Vasculitis Foundation’s Facebook page are good information sources about people who are experiencing WG/GPA.). They can also help you watch out for symptoms. They may need to become your caregiver and/or gatekeeper when you’re debilitated.
6. WG/GPA is an insidious disease. What you think you’ve got isn’t necessarily what you really have. Aches and pains that many people ascribe to aging or over exertion may be the subtle signs that the disease is becoming active again. Be especially aware of joint pain, chronic coughs (productive or not), ear issues, sinus issues, night sweats (especially those that soak through your bedclothes), and urinary symptoms (burning, pain, or visible blood in urine). If the symptoms persist for more than a few days or are very pronounced at onset, a precautionary call to your doctor is prudent. It’s better to be safe than sorry! Remember, just because you have WG/GPA doesn’t mean you also don’t have something else.
7. You must avoid people who are contagiously ill – especially when your immune system is suppressed as when on rituximab or when on induction therapy with other drugs. Your support system may need to be your gatekeeper and explainer in such situations.
8. You must hydrate. This allows the kidneys to flush the metabolites of meds and other waste products from your body more efficiently. It also minimizes the risk of worsening kidney involvement or bladder issues. If you don’t like the taste of your drinking water, add a little (maybe an ounce) natural fruit juice (a squeeze of lemon or a bit of cranberry juice) to it. It will taste better and make keeping hydrated easier.
9. You need to manage what you eat. More fresh produce and less processed sugar and starch are better. Eat a balanced diet that’s within your lifestyle (omnivore, vegetarian, or vegan). It’s OK to have the occasional sweet or bread, just don’t overdo. It’s hard enough to keep your weight under control when on high dose prednisone (some authorities define high dose as more than 10 mg/day). Don’t make it more difficult by telling yourself that you’ll do better tomorrow. It’s amazing how quickly you can pack on the pounds…
10. You should keep a journal of how you feel – symptoms, exercise, diet, activities, etc. The journal can provide clues your doctors may use when deciding whether or not you’re flaring.
11. Pay attention to drug side effects and interactions. Some of the drugs you take may work at cross purposes. Ask your doctor what you’re likely to experience on any given drug. (However, remember that the disclaimers about side effects were written by attorneys whose job is to cover their clients’ – drug manufacturers – posteriors. They will always paint the worst possible scenario. You will most likely experience nothing, or something much milder.) Also, make sure that your doctors know about all drugs and supplements (multi-vitamins, dietary supplements, herbal supplements, etc.) that you’re taking. They may interact adversely with the drugs you’re taking for WG/GPA. You should keep a current list of all your medications on your person while traveling just in case an emergency arises.
12. While striving to get completely off prednisone is a good thing in most cases, you may have to stop your taper at the point where symptoms reappear and go back to the dosage where you were asymptomatic. Hopefully, this dosage is under 5 mg/day. (Your adrenal glands may not recover their full ability to produce the body’s equivalent of prednisone.)
13. If you are on methotrexate or any other immunosuppressants that are toxic to your liver, alcohol is generally to be completely excluded or taken only in the greatest moderation. Perhaps a beer or glass of wine once a month might be OK. There are some good non-alcoholic (no more than 0.5% alcohol by volume) beers available. Wine without alcohol is just grape juice, so if you like a dry, full-bodied wine, you’re out of luck. Liquor should be avoided altogether as its alcohol content per unit of volume is much more concentrated.
14. Take your meds, follow your doctors’ instructions, and live your life to the fullest extent possible.
I hope you find these thoughts helpful. Please feel free to add your ideas as well.
Good luck and better health!!