Mike: 27 years without WG

[crackers]

yeh carol been wondering that myself.what does it actually feel like to be in remission.anybody ?
john.

[andrew]

I think 'remission' is declared after your blood results (usually ANCA) appear normal over a period of time. That period of time is usually determined by your doc. You can either have a drug-free remission or a drug-assisted remission.

[Doug]

Hello. I'm the new guy on the block, Doug. I think Andrew's response matches my doctor's point-of view, too. His response to me was based on consultations with the head of the Department of Rheumatology at the University of Colorado, Denver, where I had the treatment that brought me back to the world of the hopeful (and living!). How does remission feel? It sort of happens. It isn't one of those "yesterday I had full blown WG and today, at 6:41 a.m. I came into remission" sorts of things. Gradually, you feel a bit more peppy. You have your regular doctor's appointment, go through your usual blood and urine tests, he tells you all tests are within the "acceptable" range ("normal" is relative, it seems, and normal for me is high for many others). I have to wait for results on the cANCA test. The doctor's nurse calls, tells me the results are in the normal range (for me, again, which means relatively stable compared with earlier results).withheld. A slip of the mouse! I was diagnosed with WG about December 23, 2003. Being a guy, I walked, then crawled around with full blown WG from circa March or April of 2003, treating a potentially fatal disease with over the counter drugs. I should be dead! I see I'm out of space. My story will continue in later postings.

[Sangye]

Hi Doug,
Nice to meet you. That's a great explanation of remission. I look forward to hearing the rest of your story. Meanwhile, I don't think you can run out of space on a post-- just type as you normally would, hitting "Enter" to make a paragraph. I think I'm the wordiest person on here and so far neither the program, nor Andrew nor the group has tossed me out!

[Doug]

Dear Sangye,

I have checked out your blog, and it is most interesting! What I haven't mentioned up to this point is what part faith served in my healing, and how it has grown through the vicissitudes of WG.

[Jack]

Hi Doug,
I would edit your e-mail address or the crawlers will find it and send you lots of spam!
Just put "at" instead of @

[Sangye]

Hi Doug,
Since I wouldn't want anyone to feel uncomfortable with a more detailed talk about religion, I'll just say that using meditation, contemplation, and introspection have been very beneficial for me in dealing with/making sense of Wegs. Generating compassion is central to my practice, and has allowed me to use everything I've got--Wegs included-- to try to lessen others' suffering. You're welcome to leave comments on my blog and we can have some good discussions there. I respect the views of those of any faith.

[Doug]

Incredible! It is good to hear from someone with that rate of success. I think mine is only about four years. The exact point at which my doctor decided I was in remission is unclear to me as my "normal" is a bit high for creatinine, for example, and cANCA, but I am stable at those "normal" points. As noted, it hasn't been that long ago that an untreated member of our small cohort had a 65% chance of succumbing within five months; 85% chance of succumbing within 10 months; and a 92% chance of succumbing within two years. The other 8% probably wished they were dead within two years, is my feeling, based on how sick I was at approximately 10 months when I was diagnosed. I remember reading in some WG website where experimentally, some WG patients were treated and survived treatment with pretty much the same protocol as is used today. I didn't notice where Mike lives, but he was most lucky to be diagnosed corrected at a point where he could be healed and was in an area where a doctor was at the cutting edge of what was then know about the disease and its treatment! Mike, please expand on how you got where you are today. My doctor has had four five WG patients over the years. He can't of course, discuss the others in anything but the vaguest terms, but the last time I asked him, "Dr., how are your other WG patients doing?" he answered, "They are doing well except one who died." Imust have sent a nonverbal message of panicked concern, because he then expanded the thought. "Of course the cause of death wasn't WG." Let me add that when I asked him a bit ago about an infection from hell (shingles/ Herpes zostar) I picked up and had a rare complication I had with it (so rare I'm only the 39th or 39th known person to suffer from this Herpes zostar complication!), "Shouldn't I think about each illness I have now as the indirect result of WG effects?" he said I should and that's how he views things. Start with the WG and work toward whatever is at the end. Enough for this posting!

[coffeelover]

Doug,

Welcome to the forum! Your story is interesting and each person on this site adds a dimension that proves helpful to me and I am sure others with their stories.
In regards to your faith question.....I have always had a strong relationship with my faith and that has never wavered. Questioned at times, but never wavered. I am thankful that I was diagnosed at a time when there is a good chance of getting this in remission. (something I am still working on as I was only diagonosed in Jan of this year.)
I do not think the lack of treating yourself correctly is necessarily a "guy" thing as I did the same thing. I spend probably 8-9 months, not being able to breathe (tracheal stenosis) thinking it would "cure" itself, but eventually my stubbornness was averted by my lack of breath and I had to go in and now I have a trach and am on meds for WG.
My rheumy was angered with me for not seeing her sooner regarding my breathing issue, but has immediately jumped on the "lets take care of this now" wagon. Another thing I am most grateful for.
This forum has been another "thankful" event for me as the best advice I got was to accept my new "normal" and you reitterated that in your posting. Something I need to hear over and over again.
My aquaintances (family, friends, working relationships) have recently been asking me when I will get my trach out....of which I have no real answer...so that is my new challange. Each day with WG gets a bit easier to accept my circumstances and so therefore easier to accept these type of questions.
Thanks for listening and best of luck.
Coffeelover

[Sangye]

One of the things it's taken me awhile to get is that we need to reframe Wegs for others. When we tell someone we have this serious, chronic disease that could be fatal, they really only know about things like cancer, or other things like heart attacks-- conditions that knock you flat, but if you survive, you just steadily improve over time. In those conditions, doctors can give pretty accurate prognoses about how long recovery will take and what it will look like.

So when we tell people what Wegs is, they only have that image rolling around in their minds. We do, too, when we're first diagnosed, and until we really start talking with other Weggies. (Hence the "new normal" dialogue) Now I explain that Wegs is all about uncertainty, and getting used to that. Might get worse, stay the same, or get better.

In a therapy session one day, I was listing all the things (Wegs and not) that were overwhelming to me. My therapist said, "You're like a Bugs Bunny cartoon where there are all these holes in the dam, and you've got both hands and feet covering leaks. Then more leaks spring up! Instead of using your energy to seal all the leaks, how about if we teach you how to float?"

I thought that was brilliant. Now I tell people Wegs is teaching me how to float instead of fight.