What have we learned about living with WG/GPA?

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). 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!!

Pete what a great idea. What about something about regular exercise when possible.

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Originally Posted by windchime

Pete what a great idea. What about something about regular exercise when possible.

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Thanks! Good idea. I'll be more explicit about exercise in the next draft.

Great list, Pete! And exercise is the main additional thing I can think of as well. Although I wonder if it would make sense to include something about how to manage interacting with others about the disease, and this would include those close to us as well as others we encounter in everyday life. I realize this is a complicated and frustrating aspect of it, and if something could be stated simply without dwelling on it too much, that might be good. How not to let it bother us when others don't understand would be one approach.

Oh, I just thought of another one: being ever mindful of avoiding stress and being extra cautious when in stressful situations. Some of us must still work for a living while dealing with Wegs, and some of us are struggling to do so, and it is stressful. And of course there are other kinds of stress, whether or not people are working.

Thanks for the great advice Pete!

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Originally Posted by Jeanne

Thanks for the great advice Pete!

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You're welcome! Still gathering input from others, so this is still a work in progress.

Good job so far Pete

There are also the self help testing that you can do at home.
A bp monitor and a blood sugar monitor are great to have, as pred can increase both bp and sugar levels
A thermometer and if kidney troubles, a urine dipstick.

As well as the mentioned journal, it is good to have a file of all tests and reports incase you need to see a new specialist or are out of the State of Country.

It is also a good idea for a medi alert tag or bracelet

To me one of the biggest lessons learned is to try to stay in the middle, don't let the highs sweep you away and never let the lows take you down. When you think it is all going right be prepared for minor and major setbacks by adjusting your expectations. Also don't let the major setbacks keep you down, keep a positive attitude, keep working and finding ways to be useful.

Read, read, read, and read some more about your disease and symptoms. You will notice changes that only you will recognize and you need to be make the doctors aware of those things.

Many Doctors are specialists, just because one does not pay attention to your symptoms does not mean another one won't find them interesting.

live in today or as close to today as you can, it has taken me a lifetime to figure that one out so if it doesn't make sense to you what it means or how it feels that is ok, just strive to think about your immediate life and not so much five years out or five years ago.

Amen to your thoughts, Randy. Living in the present is perhaps one of life's most difficult lessons. As an example, I read Spencer Johnson's "The Precious Present" about 30 years ago, but it took WG/GPA for me to even begin to take its lessons to heart.

Pete,

I hope nobody gets the impression I know how to live in the present, but I have certainly been forced to move in that direction. There was a time this year that I realized that I had essentially stopped dreaming, meaning I got to a point that I no longer thought about my retirement living in some scenic location in a log home, woodstove burning, etc........ I realized with the chronic kidney disease that many of my "dreams" were not very realistic so I had to stop. It felt like a real void when I stopped dreaming but in time I started to notice more of the here and now all around me and I dwell less and less in the future or past now. In my case before wegs I used to think mostly about the future, some about the past and a little bit about right now. Wegs has forced me to think less and less about the future, essentially not at all about the past and mostly about today and tomorrow so my window of awareness is pretty much in the immediate time around me now and I can feel myself feeling less aggitated, more comfortable with life, less in a hurry. All good things.

I will say that this is also bigger than just the wegs for me but I am working hard to learn how to really listen and become an empathetic listener which also can be a very enriching thing.

Randy,

I understand. I've experienced much of the same phenomena with respect to dreams of the future. Fortunately, my here and now is populated with two little grandkids who help keep me focused on what's happening now!!:love:

Aging...such a concept...at any rate or stage...sighs...

Great Idea!! Thanks for sharing!

There was an earlier thread on same topic about two years ago or so. I bet much of the things are the same but our perspectives do change over time.

What have we learnt?
Well compiling a list as you've done is very difficult - this condition effects people so very different it's almost impossible to give advice that is suitable for all Weggies. I believe that's why this forum is so valuable. There is no leaflet or website that can give definitive answers on what to expect from diagosis, what treatment you will receive, etc, etc. The best chance of getting answers is to ask on this forum, there's probably at least 1 weggie that has a similar "version" of WG as you personally have.

Having said that, there is always certain problems that all us weggies go through where your list is invaluable.

The main thing I've learnt is problems with work and being able to find a suitable job, with understanding employers. I've had this condition since I was 17 and held down jobs until I was about 29. Unfortunately one too many relapses led to my condition becoming too severe too work, plus I ended up with more conditions (renal failure, heart failure, haemochromatosis, among others).
The problem with work is that I truly believe that work is good for your health, but with WG I found full time extremely difficult. But I couldn't afford to work part-time (I have bills to pay:predrage:). I believe the fact that I was constantly pushing my body beyond it's limits by working full time helped made relapses and a constant, slow deterioration in health inevitable.

great list, Pete :thumbsup: I hope that andrew can make it a "sticky" one.
my points to add:
* wallking everyday
* being in this awesome forum :love:
* praying to God
(I hope I can say it without breaking any forum rules)

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Originally Posted by Pete

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 ...

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.)

...
I hope you find these thoughts helpful. Please feel free to add your ideas as well.

Good luck and better health!!

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Could you elaborate about this? This being a new experience for me, I haven't really had to work with a team of doctors before. It is one of the things that I find daunting and unsure of. What are some of the things that you have done? What do I need to watch out for. Right now, I feel that I am a little novel, so I am getting a lot of attention, but I know that will eventually wane. In some ways, I want that, and in others, I fear that. I've not had to been too active in my own care before. Something new to learn, I guess.

Just would like to hear your suggestions.

Thanks,
Brett

Hi Brett,

Here a few things I've done.

1. My docs at both Ohio State and Cleveland Clinic keep my records electronically. I've signed releases so the docs at both hospitals have access to my complete record. I also insist that I get access to them. Both hospitals provide on-line access via myChart. It works well for me.
2. When I have a regularly scheduled doctor appointment, I have a written list of questions or concerns to discuss. I make sure everything is discussed, and that I understand what I'm supposed to do next before I leave.
3. I remember that I'm the patient. If I don't get straight answers or if I get a sense that the doc is uncertain about treatment, I get more careful in dealing with the doc. If I don't think I can trust the doc, I begin looking for another doc.
4. I've learned some medical terms related to GPA/WG to help me understand things better.
5. I've found that others on this forum are good sources of information and advice. If I see that someone is experiencing similar symptoms, they also tend to report on treatments and outcomes.

Hope this is helpful.

This is a great thread! :thumbsup:

I found it when searching for the term "dipstick". I asked my rheumatologist if she felt my blood tests and urinalysis every 3 months would appropriately capture kidney involvement. She prescribed weekly dipstick checks for protein and blood in the urine with orders to have lab work if it comes out positive. I was wondering if anyone else used dipsticks and it seems like I'm far from being alone! I think the discussion with my doctor is another example of being your own advocate and working with your doctor toward better care. I definitely have more peace of mind with weekly checks.

Another example of why communication with your doctor is so important - I wanted to go back to the pill form of MTX from the injectable because I was finding the injections inconvenient and troublesome. My joint pain made getting the bubbles out very challenging if not impossible and my husband was no better (like a bull in a china shop and accidentally flicked the needle itself instead of the tube). I found out that my sed rate was high (31 mm/hr). My doctor agreed to try the pills for a few weeks with more blood tests once I explained my difficulty and subpar compliance. I got my sed rate result back yesterday and it is back to a good range (17 mm/hr)! I'm glad I brought up switching the form of MTX. The blood tests show it was the right decision for me.

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Originally Posted by lag713

I found it when searching for the term "dipstick"

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Dipstick is used very often in the Australian language. In fact my brother uses it fondly (or not) with most people.
Dipstick is a name for an idiot/silly/stupid/crazy person.

We use the word dipstick the same way meaning idiot in the US. It also happens to describe the indicator for testing urine pretty well. We don't mind redundancies it seems. It's all about context.

Great list Pete. I am almost nine years into this mess now and this site has helped me so much still learning to take charge of the situation so this list is good. Thanks!

Thanks for the list. You have reminded me of a few good things. I will add here that, if you are an introvert by nature, having company or family around may not work for you and your emotional needs. Yes, that is a love 'ideal', but some people's way to not induce stress is to take others in moderation. Having a quiet sanctuary that no one, not a spouse, sibling, friend, and especially a doctor, can enter, is a great way to get some 'oneness' time. We are not a disease, we just happened to live with one, so not losing self in the shuffle is really important.

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Originally Posted by mishb

Dipstick is used very often in the Australian language. In fact my brother uses it fondly (or not) with most people.
Dipstick is a name for an idiot/silly/stupid/crazy person.

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Lol love that and use it all the time, mostly "I am a dipstick"...


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