Official Name Change

[LisaMarie]

At Mayo and just found out WG has an official new name....will fill you all when i get back to the ho :flapper::flapper:

[LisaMarie]

granulomatosis Polyangiitis....something something...dang old pred brain....they will be changing ICD codes too.....Dr Wegener's was some how connected to nazi war crimes so they are changing the name.

[pberggren1]

I'm still a Weggie.

[Sangye]

LisaMarie, you need to check in here more often. We've been talking about that name for a few weeks! Granulomatosis with Polyangiitis (GPA). Most of us think it stinks.

It is interesting that they're gonna change the ICD codes, though. That also stinks. Now doctors will really be lost. :thumbdn:

[delorisdoe]

I deal with alot of residents and I dont care what you call it...new doctors are always lost with wegners.

[LisaMarie]

LisaMarie, you need to check in here more often. We've been talking about that name for a few weeks! Granulomatosis with Polyangiitis (GPA). Most of us think it stinks.

It is interesting that they're gonna change the ICD codes, though. That also stinks. Now doctors will really be lost. :thumbdn:

i know yall have been talking about but per Dr Specks it has official changed and they are rolling out new ICD 9 CODES....so watch your billing....haven't been on much...had a black sewer flood in my finished basement...putting in a french drain to avoid rain and snow water from flooding the basement...hotwayer heater is leaking...and action broke...so it has been rough at the house before i came to mayo...they had an air scrubber in the basement for a week to get rid of all the bacteria and mold spores....busy last 2 days at Mayo and will be busy today....repeating an echo Today and possible repeat bronchoscopy on Monday...will find out if i need Rtx now ...will have to stay on 10mg of pred ...will update u all later...have a good day

[Palmyra]

Hi Lisa Marie,
I hope you get good test results and you don't have to stick around Mayo too very long. Please tell Dr Specks that his adoring fans from Texas (young Alison, with the Chilean hubby,) wish him well. Glad you are not at home while all those mold spores go away....
Best wishes.

[Daggar]

i know yall have been talking about but per Dr Specks it has official changed and they are rolling out new ICD 9 CODES....so watch your billing....haven't been on much...had a black sewer flood in my finished basement...putting in a french drain to avoid rain and snow water from flooding the basement...hotwayer heater is leaking...and action broke...so it has been rough at the house before i came to mayo...they had an air scrubber in the basement for a week to get rid of all the bacteria and mold spores....busy last 2 days at Mayo and will be busy today....repeating an echo Today and possible repeat bronchoscopy on Monday...will find out if i need Rtx now ...will have to stay on 10mg of pred ...will update u all later...have a good day

Off-topic but how did the french drain work go? Was it fairly disruptive? We live in an area where the ground water levels are high and the sump is always running - I've always been interested in the french drain method but never checked into the cost.

[Sangye]

Oh, bummer about the flooding but glad you're not there while it's being repaired!

[LisaMarie]

:flapper:Okay labs, CXR, PFT's and Echo done...now I go see Dr Specks at 1630.....to find out what I have to do on Monday....if my B cells are back ....they will schedule Rituxan back home not sure if it will be once a week times 4 or every 14 days x's 2...Dr Specks will manage me and my PCP, Pulmonary doc and ID doc and Otolarynologist will also work with him ...not sure how often I will have to come up to Mayo yet...should know more today after I see Dr Specks....
..ok the flood clean up occurred while i was home but while I was at work....and unfornately the repair has not started cause we are waiting on insurance ....but i will either be working or stay at my sister in laws while the flooring and dry wall are replaced..going for tile floors.....:hug3:
...the french drain in fairly simple but labor intensive....we had a french drain , the land graded and a new side walk for $7000.00....but with the french drain we had clean out sites for the gutters...screens for the gutters and a water saving tank place under ground that we came water the garden...if we ever get it planted...lol...the french drain drawn the water away from the house by a path of least resistance....the equipment to rent cost over $1000.00 to get the job done....but if you just do the drain and don't need the grading or a new sidewalk then it should be about $4000.00 or less in Missouri.....My parents did it on there house up in trenton mo and it was over 100 years old and it helped alot so it may be looking into and if you have a few friends you may be able to do it yourself if you get the proper plans.....anything to keep a basement dry and microb free is a good idea......
I will tell Dr Specks that Texas says Hello and will put your name in my phone so i do not forget:w00t:
will keep ya all posted.....

[Psyborg]

I'm still a Weggie.

So with the name change are we now Granny Polys? :p

[delorisdoe]

It really is closer to the name my husbands best friend used "Grannygotmytosis"

[LisaMarie]

We will always be Weggies....but the new change is gonna confuse the novice so much more...ughh....i still like the name "roller coaster ride from H..."...but you know the will never call it that..lol

[Sangye]

I predict that for many years to come docs will say things like "GPA...hmmm, which one is that.... Oh, Wegener's!" :flapper:

[pberggren1]

Go for the Spanish drain! :w00t:

[delorisdoe]

you are so funny and random. :lol::lol::lol::lol:

[RCOSSIO]

I am going to keep using Wegener's, i find having a German as my BFF is better than one with a name that rhymes with... "Granolas with Polly-Anna"

[gwenllian111]

LisaMarie, you need to check in here more often. We've been talking about that name for a few weeks! Granulomatosis with Polyangiitis (GPA). Most of us think it stinks.

It is interesting that they're gonna change the ICD codes, though. That also stinks. Now doctors will really be lost. :thumbdn:

My nan has polyangiitis too.

My Rheumy (UK) said it was called Granulomata Vasculitis now, or something.

[Sangye]

I'm already a Granola. I don't wanna be a Granola Granola Pollyanna.

[delorisdoe]

I dont want to be any type of granola

[Sangye]

I meant a Granola-- someone who lives green, etc.... I was a Granola before I got Wegs!

[delorisdoe]

Im so confused.

[jola57]

OMG I don't visit for a while and there you all go changing the name on me, Pollyanna granola, I had a hard time explaining weggies now I have to pretend to be a goody two shoes pollyanna to boot:crying:

[LisaMarie]

Go for the Spanish drain! :w00t:

Trust me Phil i had to take a hardship withdrawal from my 401k so it will cost me more in the long run taxes wise but it had to be done...kinda required to keep me healthy and breathing....so now if we can get the insurance to fix the basement walls and put in tile i will be happy...on a hunt for tankless water heater too so wish me luck.....atleast i am getting good news from Dr Specks...he is awesome

[pberggren1]

Oh yes, water problems have to be adressed immediately!

My best fried lives at the bottom of a hill and his house is lower than the ground around him so he is constantly pumping out his septic tank and sump pump hole and other areas around his house to keep the water in the basement to a minimal.

[Cindy]

Just got my Vasculitis Foundation news letter and saw the name change printed on the front page.
Do they know how long it took to get people to pronouce Wegener's granulomatosis correctly!?! And now I have to re-train everyone :blink:
But first I have to learn how to say it :huh:

[mishb]

I'm not sure that it's such a bad name change. My GP told me that if I had of said polyangiitis, that he already knew what that was and wouldn't have had to look it up. He also said that you could say it in the A&E (ER) and the nurses and doctors would also know what they are looking for basically straight away. This can only be a good thing.
I googled GPA (wegeners) and found a fantastic site done by your own Dr Carol A Langford and the explanation was far better than ones I have read on WG.

Therefore, maybe its a good name.

Keep Smiling
Michelle

[Sangye]

I love how he said you could say it in the ER and they would know what it is. I can only imagine most of people in an emergency situation trying to piece together "I have Granulomatosis with Polyangiitis." ROTFL :lol:

[ScreaminMeanie]

I love that just when the FDA approves Rituxan for Wegener's Granulomatosis, the med establishment goes and changes the name to something else and the billing codes along with it! I'm now done with my 4 infusions, but it's still showing as "processing" on my insurance website account - and has been for 4 weeks. I'm hoping this change doesn't screw up the insurance coverage.......what am I saying.....OF COURSE it will!

[gwenllian111]

Just keep thinking would have been nice to have a cool name like buttercup syndrome or something!!!

[Sangye]

LOL Buttercup Syndrome. Everyone would totally want that! :lol:

[RCOSSIO]

Haha...yes I can imagine in the ER telling the nurse you have GPA...heck they have a hard time with Wegeners as well.

[Sangye]

Man, this name change thing must be really getting to me! Last night I dreamed that I was at some doctor's office and the VF had just moved into the downstairs office. They were all abuzz about the new name. No one knew what to call it. Then somehow I wound up sitting next to Donald Trump who was going to do a bronchoscopy on me and had a 1-inch thick consent form for me to review and sign. He kept calling it GPA, too. He was also a chiropractor who was running sort of a chiropractor apprentice mill. During a lot of the dream I was occupied trying to convince two of his new chiropractors that they could start a successful practice on their own.

Sometimes I mutter in my sleep. I only hope the dogs didn't have to listen to that dream all night! :w00t:

[pberggren1]

Don't we have the strangest dreams sometimes? :wink1:

[Lightwarrior]

Man, this name change thing must be really getting to me! Last night I dreamed that I was at some doctor's office and the VF had just moved into the downstairs office. They were all abuzz about the new name. No one knew what to call it. Then somehow I wound up sitting next to Donald Trump who was going to do a bronchoscopy on me and had a 1-inch thick consent form for me to review and sign. He kept calling it GPA, too. He was also a chiropractor who was running sort of a chiropractor apprentice mill. During a lot of the dream I was occupied trying to convince two of his new chiropractors that they could start a successful practice on their own.

Sometimes I mutter in my sleep. I only hope the dogs didn't have to listen to that dream all night! :w00t:

Oh my dear friend Sangye, even in a "theatre of the absurd" dream you try to teach and empower people to be their best. You make my heart sing.

[Sangye]

LOL! It was probably pulled from memory. Back in Flagstaff there was a chiropractor who took on new graduates using restrictive contracts with "non-compete" clauses that continued after their apprenticeship was over. I had more than one talk with new chiropractors who asked me if they should sign up with him!

[Psyborg]

I had some intensely weird dreams when I was on CTX. Great entertainment value stuff...too bad they went away when I went on MTX ;P

[Sangye]

I think I had crazy dreams on ctx, too.