Update on pberggren

[annekat]

Debra, if you like I can send you a private message esplaining why Wegs is a blessing.

I know how to upload the photos. It just wont take. It just sits there and spins.....literally.....lol. The little circle at the top just keeps turning and turning for hours. Hmm, I'll have to try uploading and see what you mean..... but no time for it right how. I know I've had some problems in the past with doing things in the right succession, and I thought it might have changed a bit after the site was hacked and rebuilt.... But I really don't upload enough to know what I'm talking about. Perhaps someone could help us? Alexia's mom, you have uploaded photos lately..... Or is it our individual systems or browser issues?

[annekat]

Hmm, I'll have to try uploading and see what you mean..... but no time for it right how. I know I've had some problems in the past with doing things in the right succession, and I thought it might have changed a bit after the site was hacked and rebuilt.... But I really don't upload enough to know what I'm talking about. Perhaps someone could help us? Alexia's mom, you have uploaded photos lately..... Or is it our individual systems or browser issues? Alexia's Mom says she was having trouble with photos, so she used Firefox, and that worked! I hope that helps someone. I used Safari (Apple) the last time I uploaded, and it worked, and I also have Firefox on my computer as a backup.

[me2]

Debra, if you like I can send you a private message esplaining why Wegs is a blessing.

I know how to upload the photos. It just wont take. It just sits there and spins.....literally.....lol. The little circle at the top just keeps turning and turning for hours.


Why WG's is a blessing won't sit there and spin an spin so its an easy reply if you care to share it openly . If not, I understand. Still, it could help other people Phil (I'm a fisherman that knows how to sink the hook)

[mishb]

I think I'm with Phil on this one.

Maybe a blessing is not the correct word but it does put a new perspective on the life I live and also on life in general.
I feel a lot more calmer and less stressed about the little things.
It has made me more compassionate to other people and peoples feelings.
It has made me more acceptable to the people who used to irritate/annoy me.
I know what others, who have pain and illness, are going through.

[ShaniBooT]

Hi Phil, Dean and I are so happy to hear about you doing so well. Love to hear things like that.
Barbara & Dean

[annekat]

I think I'm with Phil on this one.

Maybe a blessing is not the correct word but it does put a new perspective on the life I live and also on life in general.
I feel a lot more calmer and less stressed about the little things.
It has made me more compassionate to other people and peoples feelings.
It has made me more acceptable to the people who used to irritate/annoy me.
I know what others, who have pain and illness, are going through. I also have a strange feeling of being blessed by getting Wegs, and I think you did a very good job of articulating it, Michelle. Maybe it was the relief of finally knowing what I had, but I sort of felt like I had a new lease on life, a chance to redefine my reality around my new circumstances. It doesn't make a huge amount of sense logically, but its sort of the feeling that things happen for a reason...... Not that getting Wegs is on the face of it a good thing, but the benefits are on the flip side of the coin.

[pberggren1]

I could explain why Wegs is a blessing but a lot of it would bring religion into it. I know that all of you are a major blessing in my life so that is just one blessing that Wegs brought along. A very major blessing indeed. I love all of you.

I have tried both IE and Fire Fox, and no photos will up load. I sent Andrew a message about it.

[pberggren1]

Maybe the pics are too big. Does anyone know if there is a limit to the size of pics on here?

[pberggren1]

I just tried some smaller pics and they worked. So I guess there is a size limit.

[annekat]

I just tried some smaller pics and they worked. So I guess there is a size limit. Glad you figured it out! I just posted an image of a funny George Carlin quote under the thread Interesting Quotes. It was apparently small enough to upload, and then I could change it from a thumbnail to a medium-sized image on the page by double clicking it. I wonder what the size limit is for uploading.

[Sangye]

Having Wegs has been a huge blessing for me-- a thought that is never far from my mind, even when I'm grumbling or feel defeated by the circumstances of the moment. If one's goals in life are to uproot all negative patterns, to deepen in compassion and to connect with the suffering of all beings, then something like Wegs is a perfect vehicle.

[Debbie C]

I to am very happy I have found this forum and I too feel blessed to have come to know everyone here who has helped me and stills sees me thru tuff times. But I still can not agree how this is a blessing again I know people alot worse than I in other ways and I am fortunate I don't have there problems, but I am still very stressed out about this whole disease and everyday trying to find a new way to combat it besides taking medicine that will eventually make me worse. I have always been compassionate towards other people but now some of the littlest things can annoy me for no reason.I quess if anything I can say I am blessed to have this disease and not have it be as life threating (right now)

[Sangye]

Debra, calling Wegs a blessing doesn't mean that I'm happy about living the way I am, it just means that I'm happy about what I'm learning and how I'm changing as a result of being pinned down by the Wegs dog.

[Lightwarrior]

Having Wegs has been a huge blessing for me-- a thought that is never far from my mind, even when I'm grumbling or feel defeated by the circumstances of the moment. If one's goals in life are to uproot all negative patterns, to deepen in compassion and to connect with the suffering of all beings, then something like Wegs is a perfect vehicle.

I understand your sentiment, I certainly have a need to uproot all negative patterns and I could stand to deepen my compassion and connect at a wider and deeper level with the suffering of all beings. You are an amazing friend Sangye.

[pberggren1]

Thank you Sangye.......very well said.

[RCOSSIO]

I think we all need glass of Chardonnay....or Ice Tea, you are more than welcomed to visit sunny Miami. :wink1:

[pberggren1]

I will come in the winter.

[Debbie C]

I will be heading to Palm Bay,Fl in a few weeks.My sister just moved there so she wants me to come down for some r&r. Can't wait to walk the beach and have some raw oysters on the half shell and maybe a good glass of wine as well!!!

[annekat]

I will be heading to Palm Bay,Fl in a few weeks.My sister just moved there so she wants me to come down for some r&r. Can't wait to walk the beach and have some raw oysters on the half shell and maybe a good glass of wine as well!!!Debra, I think it's OK to NOT think of Wegs as a blessing. Everyone is different. If this has really disrupted the course and quality of your life, I can understand your feeling resentful of the disease. But I also think there is room for a change of heart and seeing it differently some day, IF that should ever happen, not that it has to.

In any case, I'm glad you are going for some r&r in Florida, and I am sure a few of us are envious! I know it's a few weeks off, but we'll be looking forward to hearing about it.

[Debbie C]

I'll just say this on the subject and that will be it. I believe everything happens for a reason and I was meant to get this disease. I can't say that I am happy about it and it hasn't changed my life. I believe I can honestly say that this disease has disrupted the course and quality of everyones life. We all hate the preds,weight gain,fatique,mood swings,losing our hearing or sight, taking different pills or infusions hoping this one will do the trick. But it is what it is. There are a few things good that have come from me being ill,is now I spend more time with my 85 yr. old mother (taking care of her because she isn't very well ), I don't have to get up every morning and go to work and I'm eating better and relaxing with my yoga.But like I said it is what it is and there's nothing I can do to change it.

[jola57]

Well said Sangye and Debra C, I have always thought myself to be compasionate and caring if somewhat selfish (being an only child), and I view all event prior to getting wegs as blessings. By gathering all the previous events I was able to put my illness in perspective, I do not bemoan the loss of life as I knew it but enjoy what I can do with a lot more enthusiasm. I get frustrated by the many things I cannot do (I cry in frustration because of pain) and boy oh boy do I enjoy the many things I can do. We all come from different backgrounds and attitudes and by writing and "conversing" with each other we grow. We form life long friendships here, and I for one am always secure that wherever I am, I am only a few clicks away from people that care about me as much as I care about them. We don't need to be here all the time, we don't need to "talk" everyday to have that warm fuzzy feeling, there is someone out there that understands me completely. Thanks my friends for always being there.

[annekat]

"Everything happens for a reason" is a pretty good way of looking at it, I think.

[Dirty Don]

I believe 'they' are still looking for a reason for WG...I don't buy 'a reason for everything'. I still cope, have to, way I'm made up: culture, character, and chemicals.

[annekat]

I believe 'they' are still looking for a reason for WG...I don't buy 'a reason for everything'. I still cope, have to, way I'm made up: culture, character, and chemicals. Well, maybe things happen because they are meant to, or maybe things just happen.... what happens to us doesn't happen to someone else, and vice versa. So we deal with it, learn something from it, and make the best of it. Like making lemonade out of a lemon.

[Sangye]

By gathering all the previous events I was able to put my illness in perspective, I do not bemoan the loss of life as I knew it but enjoy what I can do with a lot more enthusiasm. I get frustrated by the many things I cannot do (I cry in frustration because of pain) and boy oh boy do I enjoy the many things I can do.
You are my inspiration, Jolanta. I am nowhere near being able to stop mourning what I have lost-- not even one for minute. I'm stuck in that grief. It was important to unearth the many layers of grief at one point, especially since they were connected to other grief from earlier in life, but I am feeling the need to accept it and move forward these days. Your words inspire me to find ways to release the past and my vision of what my life "should" look like, and to focus joyfully on what I can do. Thank you, my sweet friend. :hug1:

[pberggren1]

See, this just proves we are blessings for one another.

[annekat]

See, this just proves we are blessings for one another. Yes, and that we can talk about it without veering into religious topics that would be against forum rules...

[Debbie C]

Maybe I should have put this in the quote section:
One day at a time is enough.Don't look back and grieve the past...it's gone.
Don't be troubled about the future,it has not come yet
Live in the present and make it so beautiful it will be worth remembering.

[KathyB]

Maybe I should have put this in the quote section:
One day at a time is enough.Don't look back and grieve the past...it's gone.
Don't be troubled about the future,it has not come yet
Live in the present and make it so beautiful it will be worth remembering.

Beautiful and real, Debra! Thanks for sharing ... Good for all us to remember! :thumbsup:

KB

[RCOSSIO]

For those who know me...since I don't post as much as I did back in 2008-09, I always believe to live in the "NOW" because now is what I have.

[jola57]

In the short 6 years since this started I have lost 5 healthy friends my age, yet here I am. So as much as I would like to wallow in misery at times, I think of them, think of my boys, and think how lucky I am to be still here for them. Sangye, thank you. For me you have always been my inspiration. You have been thru so much yet you are here every day giving advise, hope and friendship to all that need it. That, my friend, is as my sons put it - awsome

[jola57]

Richard, it is so tru - here and now. LOL, we should have another "get out of the room" game to keep you here.

[RCOSSIO]

HAHAHA....I hear there are some members have decided to live there after hours of torture!!!!!

[chrisTIn@]

HAHAHA....I hear there are some members have decided to live there after hours of torture!!!!!

This must be an inside joke.
I haven't got the faintest idea what you mean by that? :unsure:

[pberggren1]

No, it is a timed joke....we laugh when we have time.

[jola57]

:thumbsup:

[pberggren1]

Went to see eye doc for eval. Said if I want to continue with the Avastin we can. So I said yes and will do 3 more injections. I feel it is helping. The right eye tested with holes today was 20/25. It costs 60 bucks a shot but I think it is worth it. He said the pictures looked better too. Then I said: can we adjust the contrast and color?......lol.

[mishb]

You are one brave fella, batman :w00t:

[pberggren1]

Nothing fizzes me anymore.

[pberggren1]

One thing I forgot to mention last week was me and my doc talking about tapering off the aza. He said there is new evidence that staying on lower dose of it for a longer period of around a year or so brings about a longer remission time. So I will still taper to 100mg next month if things still continue to look good but will stay there for 2 months then go to 75mg for 2 months then to 50 for about a year. We both agreed it is better to be on a drug like this longer than to have many flare ups down the road.

[drz]

One thing I forgot to mention last week was me and my doc talking about tapering off the aza. He said there is new evidence that staying on lower dose of it for a longer period of around a year or so brings about a longer remission time. So I will still taper to 100mg next month if things still continue to look good but will stay there for 2 months then go to 75mg for 2 months then to 50 for about a year. We both agreed it is better to be on a drug like this longer than to have many flare ups down the road.

Sounds like a good plan. I am thinking I will probably start something similar at the end of this year too assuming my remission continues. Thanks for sharing this!

[pberggren1]

New tech to diagnose auto-immune diseases - News Hour - Videos | Global Calgary (http://www.globaltvcalgary.com/video/new+tech+to+diagnose+autoimmune+diseases/video.html?v=2276963957#health+fyi)

This is something new that caught my eye from a another Weggie from this city that posted it on facebook.

[Debbie C]

That's good that there is a way of finding diseases sooner...that will surely help alot of people. I was just wondering if we were to take it if they could find other diseases besides WG

[drz]

New tech to diagnose auto-immune diseases - News Hour - Videos | Global Calgary (http://www.globaltvcalgary.com/video/new+tech+to+diagnose+autoimmune+diseases/video.html?v=2276963957#health+fyi)

This is something new that caught my eye from a another Weggie from this city that posted it on facebook.

Wonder if world known clinics like Mayo and John Hopkins are using this technology. Seems like they should be the leaders in using something like this.

[pberggren1]

I'm sure Mayo and other places know about this.

[Dirty Don]

I don't know how Mayo did it, this method or other...but, they had it back within 24 hours and spot on...

[pberggren1]

It was probably ANCA Don.

[pberggren1]

Does anyone remember recently about someone on here having a cholesteatoma in their ear?

[drz]

Does anyone remember recently about someone on here having a cholesteatoma in their ear?

I had one that returned many times on my left ear. It took several surgeries and mastoidectomy to finally solve the issue. After the last surgery they were able to easily remove the cholesteatoma when it returned without any more surgical procedures. They could just sort of vacuum it out. By then though most of my hearing and all of my middle ear was gone from infections and damage done by the cholesteatoma over many years. I have to get the mastoid cavity cleaned every year or whenever it gets filled up but haven't had infections in that ear for awhile. I have some limited hearing left in that ear and use a hearing aid to supplement my BAHA (bone anchored hearing aid) on other side.

Do you have one now?

[pberggren1]

Thanks drz. No, I don't have one. I saw that someone else had one on facebook and they were looking for more info.

[drz]

Thanks drz. No, I don't have one. I saw that someone else had one on facebook and they were looking for more info.

Glad you don't have one. I think you have had enough health issues and can skip this one. I have been there, done it and it was no great fun so you wouldn't be missing anything. :biggrin1:

[pberggren1]

Started feeling crappy about a month ago. More fatigue mostly with a sore throat that comes and goes and a stiff and sore neck and shoulder. More trouble breathing too and coughing up mucus. Nothing pointing to a flare yet but I think I know why. The bronchials are starting to close in again. Fortunately I go see Dr. Dave on the 27th for a bronch and dilation. Looks like 6 months will not cut it next time. Better book for 4 just to be safe. I kinda dread the day this will not work anymore and a stent or resection or transplant will be in order. Not too many years down the road for that. Quite depressing at times actually.

[annekat]

Started feeling crappy about a month ago. More fatigue mostly with a sore throat that comes and goes and a stiff and sore neck and shoulder. More trouble breathing too and coughing up mucus. Nothing pointing to a flare yet but I think I know why. The bronchials are starting to close in again. Fortunately I go see Dr. Dave on the 27th for a bronch and dilation. Looks like 6 months will not cut it next time. Better book for 4 just to be safe. I kinda dread the day this will not work anymore and a stent or resection or transplant will be in order. Not too many years down the road for that. Quite depressing at times actually. I'm sorry to hear that, Phil. Like drz said, you have been through enough stuff already! I read on here or somewhere that people with saddle nose are more likely to have tracheal or bronchial stenosis. So far, I don't have it, knock on wood. Well, I guess we all have to face the fact that anything could happen at any time and just because we feel good now doesn't mean we are getting off easy. I can relate to the depression, and sorry you are going through that.... I hope friends and family can cheer you up. Sometimes a really good night's sleep can make a difference. Good luck with the bronch and dilation, and hope that leads to you feeling a whole lot better.:hug2:

[pberggren1]

Thanks so much Anne. You are a true friend. I am sure the dilation will fix me up again for a few months.

[drz]

Started feeling crappy about a month ago. More fatigue mostly with a sore throat that comes and goes and a stiff and sore neck and shoulder. More trouble breathing too and coughing up mucus. Nothing pointing to a flare yet but I think I know why. The bronchials are starting to close in again. Fortunately I go see Dr. Dave on the 27th for a bronch and dilation. Looks like 6 months will not cut it next time. Better book for 4 just to be safe. I kinda dread the day this will not work anymore and a stent or resection or transplant will be in order. Not too many years down the road for that. Quite depressing at times actually.

I have told you Phil that you don't need any more health problems to deal with and that you should take a break for awhile cause you really deserve one but know that sometimes it is really hard to do so. Sorry to hear about you latest worries. And prospects for more medical stuff to under go. But with all you have been through you know you will get through it even though it is no fun and not the way one wants to spend their time. I share your feelings about it being depressing and am sorry to hear about it (breathing problems) coming back again.

[Sangye]

I hope this dilation lasts longer than you expect, Phil. They're growing organs left and right these days. Someone's gotta start growing lungs!

[pberggren1]

I hope this dilation lasts longer than you expect, Phil. They're growing organs left and right these days. Someone's gotta start growing lungs!

WOW! I was just looking into this before I logged onto the Forum a few minutes ago. My lung doc said some people can go many years, as long as 15 years with these dilations before needing a transplant. He said a stent would not be a wise way to go because scar tissue would just form at either end and he would continually have to cut it out.

[Sangye]

Yeah, I don't think stents are considered a good way to go for Weggies (regardless of where they're used) for that very reason. Let's grow you some lungs. It'd be way more fun to tell your friends.

[Palmyra]

http://www.nytimes.com/2012/09/16/health/research/scientists-make-progress-in-tailor-made-organs.html?src=me&ref=general

:-)

[pberggren1]

Thanks Jane....now get to growing me some....lol.

[drz]

http://www.nytimes.com/2012/09/16/health/research/scientists-make-progress-in-tailor-made-organs.html?src=me&ref=general

:-)

That is amazing science fiction medicine at it finest. Wow!

[annekat]

Thanks Jane....now get to growing me some....lol. Yes, that was an amaziing article. But Phil, I thought you just had stenosis in the trachea or bronchii. So why would you need whole new lungs for that? Obviously there's a lot I don't know. Of course, I realize your lungs could also be in very bad shape from Wegs.

[pberggren1]

What will inevitably happen over time is that the bronchials will only be able to handle so much dilation due to the scar tissue. Eventually the time between each dilation will only be a few days. That is why a lung transplant will be in order. Only option available right now when that happens.

[annekat]

What will inevitably happen over time is that the bronchials will only be able to handle so much dilation due to the scar tissue. Eventually the time between each dilation will only be a few days. That is why a lung transplant will be in order. Only option available right now when that happens. Oh, so the bronchials would be grown and/or transplanted along with the lungs? I wasn't clear on that part. The bronchials could be transplanted by themselves, but that wouldn't be good for Weggies?

[pberggren1]

The bronchials are part of the lungs that would be transplanted as well.

[annekat]

The bronchials are part of the lungs that would be transplanted as well. Aha! guess I'd better brush up on my anatomy.

[Dirty Don]

The bronchials are part of the lungs that would be transplanted as well.

- some recent research has shown that cell regrowth has been helpful in reshaping and reforming tubular and bladder like shapes to place in the body. Most recent research has actually completed some tracheal replacements. Now, not being good at anatomy of course, perhaps, they could regrow all or part of a bronchial tube?

[annekat]

- some recent research has shown that cell regrowth has been helpful in reshaping and reforming tubular and bladder like shapes to place in the body. Most recent research has actually completed some tracheal replacements. Now, not being good at anatomy of course, perhaps, they could regrow all or part of a bronchial tube? I thought there was some indication of that in the link that Jane shared... however I'd need to read it again to know for sure.

Like the new Twain quote!

[pberggren1]

I'm going to meet a new Weggie tomorrow. I got her in to see my doc. Should be interesting.

[Lightwarrior]

That is amazing science fiction medicine at it finest. Wow!

Way, Way cool

[pberggren1]

I met the new Weggie. We went out for lunch. She has severe SS. Has been lazered a few times and is on her 3rd tracheotomy. The ENT she saw for most of this says he thinks it is Wegs and that he knows Wegs. Obviously he does not know Wegs if he goes in with a laser right away. How we love our ENTs.

[annekat]

I met the new Weggie. We went out for lunch. She has severe SS. Has been lazered a few times and is on her 3rd tracheotomy. The ENT she saw for most of this says he thinks it is Wegs and that he knows Wegs. Obviously he does not know Wegs if he goes in with a laser right away. How we love our ENTs. Yeah, it's pretty easy for a doc to say they know Wegs, isn't it? I'm glad you have a doc to refer her to who really does know Wegs.

[pberggren1]

Thanks. I could tell she was very happy today to get into see my doc. I will wait for a message from her tomorrow to see how that went. Hopefully she will not need more lasering or cutting of any sort.

[Palmyra]

Hopefully so...go Phil Go!:hug3:

[pberggren1]

She asked me if she needed her doc to refer her to him. I said no, I will refer you. She laughed. I said: Dr. Phil at your service.

[drz]

She asked me if she needed her doc to refer her to him. I said no, I will refer you. She laughed. I said: Dr. Phil at your service.

Do you get a referral fee? :biggrin1:

[pberggren1]

I charge 200 for a referral....lol

[pberggren1]

She said she never saw a better doc in her life. She was very impressed. She said they spent over an hour with him. I am very happy now.

[Lightwarrior]

She said she never saw a better doc in her life. She was very impressed. She said they spent over an hour with him. I am very happy now.

And when you are happy we are happy :wink1:

[pberggren1]

You're the best Lightwarrior.

[pberggren1]

Engineered Viruses Created in Government Labs Validate Mass Vaccinations (http://occupycorporatism.com/engineered-viruses-created-in-government-labs-validate-mass-vaccinations/)

Thought some might be interested in this.

[mishb]

Started feeling crappy about a month ago. More fatigue mostly with a sore throat that comes and goes and a stiff and sore neck and shoulder. More trouble breathing too and coughing up mucus. Nothing pointing to a flare yet but I think I know why. The bronchials are starting to close in again. Fortunately I go see Dr. Dave on the 27th for a bronch and dilation. Looks like 6 months will not cut it next time. Better book for 4 just to be safe. I kinda dread the day this will not work anymore and a stent or resection or transplant will be in order. Not too many years down the road for that. Quite depressing at times actually.

Good luck with Dr Dave tomorrow, Phil.

I hope it's not as bad as you think it will be, and that you will be back to your old self in no time.

[pberggren1]

Thanks Michelle. I hope I don't have a lung infection. My doc and I are worried about that.

[KathyB]

Hi Phil --- sounds like you could get a couple different kinds of news. Hope you will find some peace in what you learn. I also hope you will find comfort in knowing we are behind you in support! Good luck!!

KB

[pberggren1]

Thanks Kathy. I know everyone here is rooting for me.

[HopeinTN]

Good luck today and keep us posted on your appointment!

[Sangye]

D'oh! I missed this. I hope it went well, Phil. :smile1:

[pberggren1]

Thanks everyone.

I had the bronch yesterday. The lung doc said he did not see any signs of infection but took somes samples to culture just to be safe. I had a fever just before the bronch and a very sevre one after. I am over it now but still feel very weak and tired. He said he did some dilation as well and a lot of blood work. So I should know all the results in about 10 days or so.

[Palmyra]

Hi Phil....have you seen the recent posts on this forum regarding immunoglobin testing/blood work, etc? If you have been victim to frequent bouts of infections, have you or your docs been testing or considered treatments w/ IVIG?
Intravenous immunoglobulin - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Intravenous_immunoglobulin#FDA-approved_indications)

It has been used when appropriate for cancer/chemo treated patients and it helped a young man I know in the states with Weg. I don't know how difficult it might be to gain access to such drugs in CA, but it might be worth a bit of research. Just thinking out loud....

Best wishes to you, two thumbs up!!
Jane

[pberggren1]

Thanks Jane. I will mention this to my doc.

[Psyborg]

I hope you feel better soon Phil. I'm going in on Monday to get the cyst removed from my sinus so I'll be joining you in healing up :)

[Pete]

Good luck, Bob. Hope the procedure goes well.

Did you get to watch the Buckeyes' game today? Pretty exciting!

[Palmyra]

Good luck with the procedure Phil..I hope all goes very well. Let us know the outcome of the biopsy, will you? Thanks!

[pberggren1]

I should know late next week all the results....hopefully. I feel a bit better today but the breathing is still worse than before the bronch. We head home tomorrow. Hopefully I will catch my doc at the hospital to have a chat with him. He leaves on holidays for 3 weeks on Monday.

[mishb]

Thinking of you Phil

I hope things are starting to improve and you can now breathe a bit easier

[Debbie C]

Phil..I just got caught up reading some of the posts and I'm sorry you've been ill but good to hear the dr. did'nt find any infection. Could it be the change in the weather. I kinow when I came home from Fl. I was great for 2 weeks there..walking 3-4 miles a day,then came home to cold weather and had to have the furnace on. I immediating got red faced, sore throat and a low grade fever. I am blaming it on dirty furnace ducts and I am having some company come clean them all this Tues.Until then I am on anti bioatics and starting to feel better....and wanting to go back to Fl. !!! Hope all yr bloodwork comes back good.

[pberggren1]

Thanks Michelle and Debra.

I still don't totally know for sure if it is an infection or not. I have not got the results back from Calgary yet. I suspect it is just a reaction to the dilation but that does not explain the worsening of symptoms prior to going to Calgary.

Breathing does seem to be a tad better today though. Still could not leave the house.

I will keep you all posted.

[pberggren1]

In one of the washing samples from last month a heavy Corynebacterium species was found in the preliminary report. This could explain my breathing and fatigue but my WBC is not elevated at all, just the ESR and CRP. Hopefully my doc gets back to me soon.

[mishb]

Wow, I had to google this one.

You seem to get them all don't you? You poor thing :sad:

Too much kissing with Batgirl or Catwoman......or both :unsure::w00t:

I hope you get better soon

[pberggren1]

Probably both....lol.

But seriously....this report was verified on Sept. 30 and I did not get this copy until today. Something is seriously wrong here.

[mishb]

Probably both....lol.

But seriously....this report was verified on Sept. 30 and I did not get this copy until today. Something is seriously wrong here.



Yep, propably both

Reading up on the Corynebacterium, I wouldn't have thought that a report dated Sept 30 would not have been enough time for the cultures to grow properly.....that would only be 3 days.
No point in stressing about it yet.
Is the breathing getting better and how long is your doc going to take........surely he knows it's you ......and not to mess around with you :predrage:

My fingers and toes are crossed for a reasonable explanation and a great outcome.

[pberggren1]

I think this type of bacteria grows fast. I'm not stressing about, just confused as to why the docs office did not send it sooner to my docs office.

Breathing is not any better.

I'm sure I will get an e-mail from him tomorrow. He is back in the country on the 26th I think.

[drz]

I think this type of bacteria grows fast. I'm not stressing about, just confused as to why the docs office did not send it sooner to my docs office.

Breathing is not any better.

I'm sure I will get an e-mail from him tomorrow. He is back in the country on the 26th I think.

Did they also run tests to find out how to best kill this bacteria? Some times these tests take a little longer to make sure they get best drug to fix you up.

[pberggren1]

This is just a bacteria group like Mycobacterium. There are probably dozens of known bacteria within this group. Sensitivity testing would not be done until the known bacteria was found. And usually sensitivity testing is not done unless it is a very rare bacteria that has very little history of treatment. Much like the Mycobacterium Abscessus I had.

[chrisTIn@]

Sounds complicated.
I hope your doc will soon inform you what went wrong,
and you 'll be able to 'get some air'!
Hold on!

[pberggren1]

Thanks Christine.

[HopeinTN]

I hope they get to the bottom of it soon. Good luck!

[pberggren1]

My doc is leaning to treating the corynebacterium. He is out of the country so it is hard for him to write a script. I have an old script for azithromycin and it seems fairly sensitive to most corynebacteriums. So I went and filled it. Hopefully it does the trick.

I am feeling a bit better the past couple of days. The breathing is still bad but the energy is up a bit. Went out to play some pool last night for a bit. Got a bit winded and tired near the end but not as bad as I thought it would be.

[pberggren1]

Found out today a friend of mine passed away. They say he had a massive heart attack. He survived the attack but the damage to his heart was not repairable. He lived a few more days then they pulled the plug.

He had bowel cancer a few years back and took a lot of chemo. They say the chemo did a lot of damage to his heart and played a role in the heart attack. But if the doc he was seeing took him more seriously he would probably be here today. All she did for him when he came to her with chest pains was prescribe him an anti depressant and says it was stress. That went on for a few months. Now he is dead.

[Debbie C]

Sorry for the loss of your friend Phil

[Dirty Don]

Sorry for the loss Phil...

[pberggren1]

Thanks guys. Still pissed thinking about that doctor he went to see. She should have ordered more tests and sent him to a cardiologist.

[annekat]

So sorry to hear this, Phil. And it's not too uncommon that we hear of doctors who've neglected to get the right tests for their patients. I understand your feeling pissed off. Condolences to his friends and family.

[chrisTIn@]

I would like to express my condolences with the loss of your friend.
So sad...

We all can take this as an indication never to give up when you feel your doctor is not taking you seriously.
Better ask a second opinion if you don't trust the diagnosis.

[pberggren1]

Thank you very much Ann and Christine.

[HopeinTN]

I'm sorry for the loss of your friend. I'll be thinking of you and his family.

[Lightwarrior]

Found out today a friend of mine passed away. They say he had a massive heart attack. He survived the attack but the damage to his heart was not repairable. He lived a few more days then they pulled the plug.

He had bowel cancer a few years back and took a lot of chemo. They say the chemo did a lot of damage to his heart and played a role in the heart attack. But if the doc he was seeing took him more seriously he would probably be here today. All she did for him when he came to her with chest pains was prescribe him an anti depressant and says it was stress. That went on for a few months. Now he is dead.

Phil,
My heart is crying for you my friend. I am wrapping you in warm white light to help you heal. I hate it that you have lost so many friends.

[RudiK]

I'm sorry for your loss, Phil, you are in my thoughts and prayers.
Rudi K.

[pberggren1]

Phil,
My heart is crying for you my friend. I am wrapping you in warm white light to help you heal. I hate it that you have lost so many friends.

Thanks Light. It is always hard to face death. But somehow we manage to trod along again. Without friends like you guys it would be much harder.

[Psyborg]

Sorry for your loss Phil.

[pberggren1]

Progressive dyspnoea following the treatment of Mycobacterium abscessus infection in an individual with relapsing granulamatosis with polyangitis (Wegener (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3517313/)

Here is the Pubmed publication on my GPA and M. Abscessus if anyone is interested.

[mishb]

What a way to become famous :lol::lol:


I'm glad your doctor put this together......thankyou for sharing

[pberggren1]

I thought being Batman was enough but I guess not.....lol. I was playing pool with Ajay this evening and he mentioned it was up on Pubmed now. He is a good doc as well. 4 years younger than me. He is going to introduce me to the new residents when they come this spring so I can tell them my story.

[drz]

What a way to become famous :lol::lol:


I'm glad your doctor put this together......thankyou for sharing

Quite a write up and history. Complete with pix of your lung for the whole world to see. What an ordeal!

[rif]

Very good article with plenty of information and added bonus of pictures Phil, it made interesting reading.
Hope this will prove invaluable to others with similar diagnosis.

Rif

[annekat]

Thanks for sharing, Phil! I saved it in my "health" folder under bookmarks. As an aside, I was interested in the pics of your saddle nose. It looks quite a bit like mine. Could be worse. I'm sorry you've had all the additional problems that most of us haven't..

[pberggren1]

Thanks Anne. Hopefully nothing more pops up besides the eye thing.

[Debbie C]

WOW Phil,I just read your story ,very interesting, and sorry you had to go thru it. Let me ask you though in reading it at the end it sounded like the drugs (along with GPA ) caused alot of problems even though it saved you it makes you wonder if they were too agressive with all the drugs. Your name should be Superman instead of Batman !!!

[pberggren1]

The only drug that was a major problem was the Amikacin antibiotic used for the M. Abscessus. It took the remaining hearing I had left. As far as the Wegs drugs go the ctx did cause my bladder to bleed but once I went off it then it was okay again. I don't think we treated either one too aggressively.

[pberggren1]

Saw my doc today. All my numbers are good except the PR3. It is up to 41, highest it has ever been. Good thing he got the rtx approved again. We will do the first infusion on Jan. 22. I have no signs of a clinical flare yet. Just a bit more tired, that is it. Maybe 10 to 20% more crusting in the nose as well over the past month or so, but nothing serious. I also had a mild headache a couple times this past week with a bit of nose pain. So today that made me think if this is a flare it could be attacking the nose again. I'm just glade we are finding this early this time before too much damage is done. And it looks like I will only have to pay 2 dollars per infusion. I will only get 250mg of solumedrol this first infusion seeing as I am not in a clinical flare. If I was in a clinical flare then I would get 500mg seeing as it helps with a flare.

[drz]

Saw my doc today. All my numbers are good except the PR3. It is up to 41, highest it has ever been. Good thing he got the rtx approved again. We will do the first infusion on Jan. 22. I have no signs of a clinical flare yet. Just a bit more tired, that is it. Maybe 10 to 20% more crusting in the nose as well over the past month or so, but nothing serious. I also had a mild headache a couple times this past week with a bit of nose pain. So today that made me think if this is a flare it could be attacking the nose again. I'm just glade we are finding this early this time before too much damage is done. And it looks like I will only have to pay 2 dollars per infusion. I will only get 250mg of solumedrol this first infusion seeing as I am not in a clinical flare. If I was in a clinical flare then I would get 500mg seeing as it helps with a flare.

Glad to hear they caught it early this time but sorry you are flaring again. Just curious though about whether you usually feel pain in your nose during flares. I just notice a lot more blood in sinus rinses (some fresh and lot dried), congestion in nose, and pain in body, usually the elbows. My inflammation markers usually jump too.

Congrats on the great price for the RTX. Enjoy the solumedrol.

[pberggren1]

This is the first time I noticed pain in my nose with a flare. Only at onset did I notice pain in my nose.

I'm feeling worse today. More tired. More mucus from lungs coming up. Mucus in nose and lungs seems stickier. I might go for some Solumedrol today or tomorrow.

[Dirty Don]

Get your butt in there Phil, you know better! Hang tough buddy, as you always do.

[pberggren1]

I'm back home now with no solumedrol. The ESR, CRP were down a lot lower today than Thursday. What's up with that? I will go back tomorrow for the same labs to see what is going on. Maybe I just have an infection of some sort. My WCC was almost 14.

[pberggren1]

CPR today was 36 so I had 500mg of Methylprednilosone infused today. I will go for another dose tomorrow. And hopefully can start the rtx Tuesday or Wednesday.

[annekat]

Best of luck with all of it. We need to get you out of this continuous cycle of WG/GPA problems!

[pberggren1]

I think I'm pretty much doomed until I get new lungs. I'll probably be dead by then.....lol.

[annekat]

I think I'm pretty much doomed until I get new lungs. I'll probably be dead by then.....lol. I certainly hope not! If new lungs are the solution, I hope they will materialize ASAP!

[Victoriaitsnosecret]

Hi Phil,
Sorry you're not feeling well. This disease stinks. I'm tired after just a few hours of light work or exercise. My nose always hurts, sometimes when I tough it it feels like I'm hitting a nerve. Wishing you well.

[annekat]

Hi Phil,
Sorry you're not feeling well. This disease stinks. I'm tired after just a few hours of light work or exercise. My nose always hurts, sometimes when I tough it it feels like I'm hitting a nerve. Wishing you well. Victoria, for the short amount of time you've had this, you are doing great. I could do nothing but lie in bed or sit at the computer at that point. I'm very sorry about your nose, though.... that pain is something I didn't really experience. I hope it gets better and they find a cause for it beyond erosion of the tissues..... a polyp, maybe, or a crust that hasn't dislodged? Good luck. :hug1:

[Shannon]

Hi Phil,

I'm sorry to hear about flare and all of the medicine you have to take. It can be so scary when the WG rears its ugly head and reminds us it's always there lurking in the background. I hope the medicine helps and you start feeling well again soon.

I read you something you just wrote and wanted to ask you about it. You said something about sticky mucus. I have had WG since 2005 and it has been well-controlled all this time, but I have had severe congestion for the past several months and sometimes it feels so sticky that I cannot cough it up. I have been telling my pulmonologist that I think this has something to do with my WG but he isn't completely certain. It is to the point where I don't do much activity because I have trouble breathing with all of the congestion. It's not an infection because it's been ongoing since last May. Do you think it could be a new component of WG that I just haven't experienced yet? I was thinking about making another appointment with my pulmonologist but I have to tell you, it's reaching a point where I feel embarrassed to be calling again. My nose has also been so stuffy again that I find myself holding it open while I work and I'm on 5 mg. of Prednisone daily, 20mg of MTX weekly and a massive dose of steroid nasal spray every day. I'm bummed and a little worried about what the next step could be if I'm having a flare despite the medicine I'm on. I'd love to hear your thoughts on this, although I suspect I already know the answer.

Thanks,
Shannon

[pberggren1]

Shannon, I suspect the steroid nasal spray may be the culprit here. Long term use of that stuff can cause a rebound effect where you will actually experience worsening symptoms.

But bottom line: Do you have a Wegs specialist? That is absolutely paramount for ALL Weggies.

Only a Wegs specialist can make the right calls here. Is your ANCA up or is that a reliable marker for you? What about your other numbers?

[pberggren1]

I get my first infusion of rtx tomorrow at 11am. And the total cost of all 4 doses is $18,544.87. Luckily I only had to pay $2.00.

[annekat]

Shannon, I have the same problem with the sticky mucus that is hard to cough up, causing difficult breathing at times, though I don't use the steroid nasal spray. I'd trust Phil on that, though. It seems like my problem is worse in the winter months when I'm breathing dry or damp cold air. We have had "freezing fog" here lately.... can't be good! I always put a pan of water on my wood stove and plug in humidifiers are good, too. I also don't think I drink enough water, and one can take generic Mucinex to thin mucus. My take on the problem is that the mucus forms in my sinuses or in response to sinus drainage, and is definitely Wegs related. But your situation could be totally different, and Phil is right, try to hook up with a Wegs specialist, especially since your pulmonologist seems uncertain about the cause of your symptoms. I should think he'd WANT to at least consult with one himself, if you can't easily access one in person.

Another thing that causes a rebound effect is dextromethorphan, which is in many cough syrups and suppressants. I take it once in awhile if I'm going somewhere where I don't want to cough, but if I take it very often at all, I get into trouble with too much coughing. So I try to avoid it in most cases.

[Shannon]

I have a pulmonologist who knows a lot about Wegs but I don't think he is considered a Wegs specialist. He was actually talking about transferring my care to a Rheumatologist on my last visit and I was wondering why. Maybe my symptoms are becoming too widespread for just his one area of expertise. I have been on the generic for Flonase (2 sprays each side, everyday) for a year now. I read the pamphlet and it said it can also cause upper respiratory problems. Maybe I just need to stop taking medicine for a while and see what happens. Regarding my blood work, I haven't had my ANCA checked for a while, but all other looks normal...but it also looked normal when I was coughing up blood and my nose had collapsed on my face. I wonder why that is with WG? I read that over and over on this site, which I think is what makes it so hard for doctors to diagnose.

[Shannon]

I get my first infusion of rtx tomorrow at 11am. And the total cost of all 4 doses is $18,544.87. Luckily I only had to pay $2.00.

What is RTX?

[annekat]

My doc is also a pulmonologist, who has treated some Wegs cases but is by no means a specialist. I would like to see a rheumatologist but in my area, it isn't easy to find one who has Wegs experience. I think it is good of your doc to want to transfer you, and you could still see him for lung issues. I imagine he will find someone he feels is qualified to treat Wegs. For myself, I have a name of a rheumy in Seattle who treats one of our forum members and consults with top specialists as well. It would be a bit of a drive, and my vision isn't that great right now, but I suppose it is only a matter of time before I'll take the leap and pursue that.

[Dirty Don]

What is RTX? rituxin or rituximab...a very expensive, depending on insurance, drug. Has been used very successfully with WG. For me, it's the next step if the mtx doesn't hold up or do its job.

[Shannon]

Thank you all. It has been great talking with you about this rather than just sitting here trying to figure it out myself. I do take Mucinex everyday, which helps a lot with the congestion. I too believe that the root cause is just constant drainage. I have figured out that the more room temperature water that I drink the looser it is. I live about three hours from the Cleveland clinic and my husband was just asking why I have not just found a WG specialist there because they are on the cutting edge of WG research. Can anyone confirm that a Rheumy from Cleveland Clinic may be better than one from U of M? I don't mind making the drive but if most rheumy's are well-versed in WG then maybe it isn't necessary. I do think it would be nice to be able to ask a WG specialist about the different treatment options since I have never tried anything other than the MTX/Pred/Bactrim combination. I love my pulmonologist so much. He's been with me since he was a fellow at U of M and I was one of his first patients so we have learned about WG together. I have a fear of losing that close personal relationship we've developed, but he also said at my last appt that he only has a CT and stethoscope at his disposal where a rheumy has so many more tools and knowledge. I think he's worried at this point that he's doing me a dis-service by not referring me out. And, I could still see him for the lung issues I guess. Don, how long have you been on MTX? My pulmonologist said that Cytoxan would be the next step for me, I wonder why not RTX if it works so well...

[annekat]

What I've gotten on here is that most rheumys AREN'T well versed in Wegs, because it is so rare, and most of their patients are there for more common diseases like rheumatoid arthritis. But that doesn't mean that you couldn't find one a little closer to home, say at the U of M, and he or she could consult with someone at CC from time to time. Or you could go to CC once in awhile but mainly go to your local doc. In my case, there is a rheumatology clinic at U of WA, and some of the docs there are experienced in treating WG and other vasculitis, though some on the forum would not consider them specialists. In the case of the doc I heard about through a forum member near me, I read on here that he does consult with Dr. Langford at CC.

In my case, I was started on CTX because of my lung issues, and when those cleared up, I was switched to MTX. As for RTX, my treatment started right around the time it became approved to where insurance companies would cover it..... but I had bad insurance and am now on Medicare, which is also not great, and have no supplemental plan, so with the copay, it would be too expensive for me. Unless I could make some special arrangements, which I've heard are possible.

[Dirty Don]

Don, how long have you been on MTX? My pulmonologist said that Cytoxan would be the next step for me, I wonder why not RTX if it works so well...

I've been on mtx just over a year and a quarter...seems to have worked well enough...not many if any side effects. As to your pulmy and cytoxan, I don't know why he/she would recommend ctx over rtx, maybe Sangye or drz can answer that...but...although you have a close relationship with your doc who seems to be trying, you do need people who are experienced with WG rather than those willing to learn...there's a cost to that. Quick story: the hospital system that saved my life after my initial flare was willing to work on/with me for the WG...but, since Mayo did the analysis, I went there. ALLLLLL the difference in the world: Mayo has an organized, experienced, aggressive, and research oriented approach. Wham Bam, I was on the Mayo/WG train, haven't got off yet, don't really want to, and they haven't missed at any step in my treatment. The advantage of using a research oriented facility is obvious in the specialty abilities and resources. I'd go to CC, if for nothing else, to see what they have...you may be impressed and helped!!!

[Pete]

Hi Shannon, I was in a situation similar to yours last year. I was diagnosed and being treated for WG by a pulmonologist at Ohio State. They were treating maybe 30 wegs patients at any given time. They kept me on cytoxan for almost 18 months. I self referred to Dr Alexandra Villa Forte (rheumatogist) at CC. The practice there sees around 700 wegs patients. The question I would put to your pulmy is the number of wegs patients they are treating. If it's a relative few, you might want to go to CC. I'm very pleased with Dr Villa Forte and would highly recommend her.

[drz]

What is RTX?

Our shorthand for Rituxan or rituximab.

[drz]

I've been on mtx just over a year and a quarter...seems to have worked well enough...not many if any side effects. As to your pulmy and cytoxan, I don't know why he/she would recommend ctx over rtx, maybe Sangye or drz can answer that!!!

In my case they initially tried RTX but it takes longer to work so they switched to CTX as it works quicker which is very important if your survival is in doubt. They did IV CTX first on me but then switched to oral cause it is easier to regulate and the doctors also said oral tended to be more effective. It was really hard on me (real low WBC and frequent infections) and eventually they had to give up on CTX for me but by then I had recovered enough to switch to generic Imuran which worked well for me. RTX is my back up plan for a real serious flare. CTX is also a lot cheaper and some insurance plans might require a trial of CTX first or good reason why not before they would cover RTX which is very very expensive.

[pberggren1]

Got the rtx today. In and out of the hospital in about 7 hours. The rtx only took about 4 hours to infuse. Went faster than I thought it would.

Doc wants to do rtx now every 6 months as a maintenance dose. He will try and get the drug plan to approve it for that use.

Doc also wants me to avoid all public places for the next 4 weeks. So that means no more pool for a while.

All this solumedrol and rtx has made me really dry and tired.

[annekat]

I hope the aggressive plan of action ends up being worth it! I'm sorry you aren't feeling great and hope that improves soon.

[pberggren1]

Thanks Anne. How are you keeping these days?

[annekat]

Thanks Anne. How are you keeping these days? Oh, doing OK, just a lot of that dry coughing stuff and a little trouble breathing when junk is stuck in there. Pretty fatigued after any kind of work. Need a few days to recover from anything major. I'm getting labs next week so will see if anything has changed..... generally been on a slow but steady improvement course but not ready to lower any meds except maybe taper pred a tiny bit if labs are OK. That's what I'm going to tell the doc, anyway.

I might add, been sinus rinsing more than usual, because sometimes I know there's still stuff in there, so I repeat. The other morning I did it 5 times and got two HUGE chunks, one out of each side of my nose. I mean HUGE. Biggest I've ever seen, like giving birth, as someone on here said. Usually something that big ends up in the back of my throat instead. I'm telling you all this because I think you might kind of like that sort of thing. I didn't take pictures of them, though. (The rest of you, sorry for the gross-out!)

[Shannon]

Hi Shannon, I was in a situation similar to yours last year. I was diagnosed and being treated for WG by a pulmonologist at Ohio State. They were treating maybe 30 wegs patients at any given time. They kept me on cytoxan for almost 18 months. I self referred to Dr Alexandra Villa Forte (rheumatogist) at CC. The practice there sees around 700 wegs patients. The question I would put to your pulmy is the number of wegs patients they are treating. If it's a relative few, you might want to go to CC. I'm very pleased with Dr Villa Forte and would highly recommend her.
Thank you for the name at CC. I'm going to call about making an appt. I think you're correct that my pulmonologist's clinic doesn't see the kind of WG volume that CC does. After reading about Dr. Koenig I sure wish I could see him. Good advice! It's easy to keep doing what feels comfortable.

[annekat]

Michelle, I'm glad you like my post about the chunks. I was a little worried that I was rude to Phil by implying he liked chunks. It's just that I'd heard him mention them a few times. It was my Weggie mind going out of control a bit.

So, Phil, no offense intended. But they really were impressive! And my nose has been a lot clearer since they left.

[mishb]

Michelle, I'm glad you like my post about the chunks. I was a little worried that I was rude to Phil by implying he liked chunks. It's just that I'd heard him mention them a few times. It was my Weggie mind going out of control a bit.

So, Phil, no offense intended. But they really were impressive! And my nose has been a lot clearer since they left.


Hahaha - I liked your post because I can so relate to it :biggrin1: and I don't think it's being rude to Phil, he and most others on here could also relate, I bet.

Gotta love it when the chunks are out......can breathe for at least 5 minutes before they start forming again.
Unlike Phil, I would never take photo's :scared:

[Shannon]

I just emailed Dr. Carol Langford at the Cleveland Clinic about making an appointment to have them either take over or co-manage my Wegener's with my current doctor. I really feel good about this decision. I have been on MTX almost constantly since 2005 and I'd really, really like to be able to get in remission and stay there for a change. I don't think I've ever gone more than nine-months in remission at one time. Fingers crossed! BTW, I referenced this forum in my email to Dr. Langford who heads up the vasculitis clinic and told her what wonderful people were on this site and how value their advice is. It seems to me that a lot of doctors could learn a lot more about GPA just by reading some of the posts that are on this site.

[annekat]

I just emailed Dr. Carol Langford at the Cleveland Clinic about making an appointment to have them either take over or co-manage my Wegener's with my current doctor. I really feel good about this decision. I have been on MTX almost constantly since 2005 and I'd really, really like to be able to get in remission and stay there for a change. I don't think I've ever gone more than nine-months in remission at one time. Fingers crossed! BTW, I referenced this forum in my email to Dr. Langford who heads up the vasculitis clinic and told her what wonderful people were on this site and how value their advice is. It seems to me that a lot of doctors could learn a lot more about GPA just by reading some of the posts that are on this site. That is really great, Shannon! I would think just knowing you are going to get that caliber of care would boost your spirits enough to help with your healing. And I agree with you that most doctors could learn A LOT about our disease by reading this forum. I hope at least a fair number of them do. It would be time consuming for them, but if they are going to treat GPA patients, they need to take the time to learn about us.... otherwise, they really shouldn't be treating us. And kudos to you for making an effort to get the best care possible, even if it is inconvenient.

[annekat]

Hahaha - I liked your post because I can so relate to it :biggrin1: and I don't think it's being rude to Phil, he and most others on here could also relate, I bet.

Gotta love it when the chunks are out......can breathe for at least 5 minutes before they start forming again.
Unlike Phil, I would never take photo's :scared: Yeah, my chunks are sneaky, as I can often still breathe when they are in there.... they hide in the nasal cavity. But as they grow, I feel worse and worse, until I realize.... there's something big in there!

I've seen Phil's pictures (don't ask me why I even looked at them) and they are NOTHING compared to these recent chunks. That's why I thought he might be interested in them. Although I'm sure he's had some monstrous chunks, too, that maybe he hasn't seen fit to photograph, or at least to share.....

[pberggren1]

Send me some pics Anne. You know me. I love chunks......lol

[annekat]

Send me some pics Anne. You know me. I love chunks......lol LOL! I'm so glad you found that funny. Well, those chunks are long down the drain...... I thought later, shoot, I shouldn't have done that, they might mess up my septic system. If I get more like that, I will think about it...... if I can stand to look at them that long.....:rolleyes1:

[pberggren1]

It's art Anne. Don't throw away good art......lol.

[mishb]

LOL! I'm so glad you found that funny. Well, those chunks are long down the drain...... I thought later, shoot, I shouldn't have done that, they might mess up my septic system. If I get more like that, I will think about it...... if I can stand to look at them that long.....:rolleyes1:


LOL - my husband always blames me for clogging up the pipes:rolleyes1:

[annekat]

It's art Anne. Don't throw away good art......lol. Har, har! :tongue1:

[annekat]

LOL - my husband always blames me for clogging up the pipes:rolleyes1: Y'know, I thought of that, too. Like maybe I should empty the trap under the sink in case they are still in there. Yuck!:ohmy:

[pberggren1]

I emptied out the trap once. Wear a mask if you are going to attempt this as many previous meals will want to come up.....lol.

[annekat]

I emptied out the trap once. Wear a mask if you are going to attempt this as many previous meals will want to come up.....lol. Bleaghh!!!

[pberggren1]

Let the hubby do it.....lol.

[annekat]

Let the hubby do it.....lol. (palm of hand hits forehead....) I KNEW there was some reason I needed to try harder to find a hubby!

[drz]

Drano is easier and cheaper.:biggrin1:

[pberggren1]

My chunks turned into concrete. No Drano was ever gonna touch that ****.

[mishb]

My chunks turned into concrete. No Drano was ever gonna touch that ****.


What other forum do you know of, that could turn Phil's medical problems......into chunks, and blocked drains :lol::lol::razz::lol::lol::thumbsup:

[Victoriaitsnosecret]

So many times I've expected to see my brain fall out into the sink. How can that much stuff even fit in your nasal passages? They're not that big. I hadn't been able to breathe through my nose for about 2 years and couldn't smell much. After my first nasal rinse I was like wow. Then a few hours later they're back. What the heck? Chunks they must multiply like bunny rabbits.

[annekat]

What other forum do you know of, that could turn Phil's medical problems......into chunks, and blocked drains :lol::lol::razz::lol::lol::thumbsup: Yeah, and this particular thread is 193 pages long. I wonder how many times on this thread, chunks have been mentioned? Probably quite a few, since it is Phil's thread! :flapper:

[annekat]

So many times I've expected to see my brain fall out into the sink. How can that much stuff even fit in your nasal passages? They're not that big. I hadn't been able to breathe through my nose for about 2 years and couldn't smell much. After my first nasal rinse I was like wow. Then a few hours later they're back. What the heck? Chunks they must multiply like bunny rabbits. What gets me is how many chunks I had to put up with for a couple years before I even knew I had Wegener's. So I guess others can get them, too, since I did mention them to my ENT back then, plus actually googled them, and found people discussing them not in a WG context. But you'd think the doc, who was aware of WG, would have put two chunks together and gotten a clue....

I, too, am amazed at what can come out of something the size of a nostril. Like someone said on here, it's like giving birth.

[pberggren1]

Even in the past few days I have had chunks bigger than a large marble. Should I take new pics?

[annekat]

Even in the past few days I have had chunks bigger than a large marble. Should I take new pics? Oh, that's OK, Phil.....:rolleyes1:...... My latest chunks were about the size of a small walnut, but flattened and elongated, (and a little softer than a walnut, of course).... no kidding!

[pberggren1]

Anne, are you a scaredy cat?.......lol

[Dirty Don]

OK you two...enough gross frivolities...you're making my coffee curdle!

[annekat]

Anne, are you a scaredy cat?.......lol Anyone with chunks as big as mine can't be too much of a scaredy cat, ha,ha......

[annekat]

OK you two...enough gross frivolities...you're making my coffee curdle! Mine, too, except I haven't had it yet. I'm about to, though! It's that time of day in the American West! Gonna take it back to bed with the TV and not linger here.....

[pberggren1]

3 rtx infusions down, 1 to go. These infusions are sure wiping me out this time. At least my throat is not so sore anymore.

My doc said today that he wants to do another infusion of 1,000mg in 4 months and then another in 4 months after that. He does not feel comfortable using it freely every 6 months as there is not much data on it yet. Hopefully that will give me a longer remission.

[pberggren1]

He also does not want me going out in crowds until the middle of March. He said it is too risky with my lungs the way they are. And he said after that I still have to be really careful not to be around anyone that is sick. This will be hard as I have pool league to finish up in March. I might have to drop out.

[annekat]

Sorry the infusions are wiping you out but glad you are getting through the process OK, hope you don't have to give up the pool league. I guess this is a reason I'm not all over finding out about RTX and whether I might take it someday.... I've heard so many stories of the fatigue and the length of time it takes to work, all that.

[chrisTIn@]

At least my throat is not so sore anymore.



That's good news!
Hope you 'll soon recover from the 'whiped out'-feeling though...:smile1:

[HopeinTN]

Good luck Phil. I hope you are healthy enough to make your pool league.

[pberggren1]

I actually don't feel that wiped today. Much less crusting and bleeding in nose today as well. Coughing up much less as well. I suspect the rtx is working well now. My doc actually said rtx starts working the first day as it works very fast at eliminating all B-cells.

My doc does not want me back to playing pool for another 5 weeks or more. I will try and bargain with him seeing as the b-cell count is the same now as it would be in 3 months anyway. I will just ask him if wearing a mask and lots of hand washing would be okay.

[alive and kicking]

I have Ritux Phil, its doing ok by me so far,so hope it does for you! Good luck!

[pberggren1]

Thank God for rtx.

[carriej22]

After reading your story Phil, I'm glad RTX was the plan of action for me from day 1. It's strange how this happened seeing it's usually used when other things don't work; but then again I think I was sicker than I knew myself.

[pberggren1]

Actually docs today would far rather use rtx first before ctx cuz it is way less toxic.

[drz]

Actually docs today would far rather use rtx first before ctx cuz it is way less toxic.

But insurance companies often focus first on cost and CTX is far cheaper so they will usually push for trying the cheaper one first. Since RTX is now approved for treating GPA it is much easier for doctors to get its use approved.

[annekat]

But insurance companies often focus first on cost and CTX is far cheaper so they will usually push for trying the cheaper one first. Since RTX is now approved for treating GPA it is much easier for doctors to get its use approved. I wish they could find a way to get the cost down. What's up with a drug costing $40,000 ? Or whatever it costs.

[pberggren1]

The cost for the rtx for my last 4 infusions was $18,600.00.

[annekat]

The cost for the rtx for my last 4 infusions was $18,600.00. Hmm, don't know if it could be different in the US, or maybe the price has come down from some of the figures I'd heard. But that's still a heck of a lot of money from my point of view.

[pberggren1]

It is even cheaper in the US, but not by much. And about half that price in the UK. But still way too much.

[annekat]

It is even cheaper in the US, but not by much. And about half that price in the UK. But still way too much. Well, MTX is getting its chance.... if I should need RTX, then I'll look into how to get it paid for ... nice to know it's not as much as I thought.

[pberggren1]

I can always try and smuggle some across the border if needed.

[pberggren1]

Health Region Responds to Facebook Campaign - Swiftcurrentonline.com (http://www.swiftcurrentonline.com/index.php?option=com_content&view=article&id=21397:health-region-responds-to-facebook-campaign)

[pberggren1]

In my previous post it is a link to a news story done on the radio. It is an interview of the Senior Medical Officer for my health region.

I started a facebook page to try and get my doctor to stay here. He was being overworked and having promises made and not kept. I was able to meet with the board and chairman. I think that had the biggest impact. Now other doctors in the region are thanking me. I guess things needed a shake up.
https://www.facebook.com/Dr.Tagboto

[mishb]

That's fantastic news Phil - Batman has done well :thumbsup:

I'm surprised that it worked with only 300 likes - it would takes 1,000's and a petition to the government, for it to work over here......well done, again.

[pberggren1]

When I do a job I get it done fast. That's how Batman works.

[annekat]

Great job, Batman! You saved the day.

[marylz]

Hope you feel better and get to go home soon!

[Debbie C]

I was watching Dr. Oz the other day and he had a lady on talking about her 2 year old son that was diagonosed with some disease (I don't remember what ) and was given mtx which made him really sick,so she took him to another Dr. and he had been misdiagnosed at first so they went the holistic route with certain fruits and foods and now 2 weeks later he was fine and Dr. Oz was saying how bad mtx and this other immunesuppressants drugs are so bad for you. Makes you wonder !! If we were to build up our immune system so well to fight the bad cells instead of depleteing it maybe things would be different.

[Dirty Don]

Yeah, Dr Oz also recommends weight loss pills too...Yes, mtx and the others aren't good for our bodies. In fact, they're downright destructive (that's why every one of us on here wish and hope for good tapering processes)...but, they do what they need to do: suppress our immune systems. It's not the fact that our immune systems are in poor shape...it's the fact that the AI has attacked us (see other threads or read up on WG progressions) and needs to be repressed for a time so it doesn't kill us. So, a stronger immune system probably isn't the answer right now. As Bob suggested earlier, it seems WG likes to attack relatively healthy people...go figure. I wasn't the epitome of great health, but I was in good shape and doctor-proclaimed in good health...again, go figure! Besides the drugs helping and hurting our bodies, they screwed up my golf game...got any pills for that?????? LOL! Best of luck!

[annekat]

I was watching Dr. Oz the other day and he had a lady on talking about her 2 year old son that was diagonosed with some disease (I don't remember what ) and was given mtx which made him really sick,so she took him to another Dr. and he had been misdiagnosed at first so they went the holistic route with certain fruits and foods and now 2 weeks later he was fine and Dr. Oz was saying how bad mtx and this other immunesuppressants drugs are so bad for you. Makes you wonder !! If we were to build up our immune system so well to fight the bad cells instead of depleteing it maybe things would be different.
A friend shared this link with me a few weeks ago, and made a hard copy of the text for me. I don't know if this is same little boy that was on Dr. Oz., but he had juvenile arthritis and was on MTX. Part of the more "holistic" treatment that got him off MTX was quitting gluten and dairy, along with other dietary adjustment. There was discussion of leaky gut syndrome. I have to read the hard copy over and over to get the overall gist of it, but it sounds like it really worked for the little guy. However, I wonder if Dr. Oz knows anything about Wegener's or vasculitis and if he would recommend us trying to replace our immunosuppressants with something like this. I think he would be sticking his neck out pretty far to say anything of the sort. Personally, I've just quit eating wheat, for various reasons, possible weight loss being among them. And to possibly reduce general inflammation. Really, to see if it makes me feel better in any way, not necessarily because I have Wegs.

Here's the link to the NY Times article with pics of the little boy:
http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?pagewanted=all&_r=0

[chrisTIn@]

I've met 17 Weggies so far.

I saw this elswhere on the forum, Phil. I copied it to your own thread, if you don't mind.
I would like to know: did you travel around in an RV like vdub, or maybe in your Batmobile? :biggrin1:

You sure met a lot of Weggies!
How was it to meet other fellow-Weggies?
Did you feel a lot of resemblance?

[annekat]

I've met one Weggie. That was our beloved Al Swanson. I have plans to meet up with another Weggie on our forum who lives near me. I'll probably share who it is once it actually happens. I only visited with Al for a short time but yes, I felt some resemblance and a definite affinity due to our shared disease.... probably helped by the fact we were around the same age; he was just a few years older.

[pberggren1]

I've met 5 in my own town and another 12 in other places. Did not have to travel far at all. Most were because of doc appointments anyway.

[annekat]

5 seems like a lot for a small town... anyone ever conjectured why that many? What is the population?

[pberggren1]

There are about 16,000 in my town. Wegs is about 1 in 5,000. There are 3 of us in the town as far as I know and I know of 4 others with in a 30 min drive of my town. My whole health region has about 50,000 and that covers and area of about 180 miles by 150 miles.

[pberggren1]

There is also a town in Montana that has a bunch of Weggies.

[Psyborg]

I always wonder if it's increased awareness or if there is something we are doing that is making these diseases more common?

[RudiK]

Bob, I think there are far more Weggies that are unrecognized/undiagnosed due to lack of understanding by doctors. These patients eventually die of kidney failures or other organ failures when in fact they had WG. Here in El Paso/TX, a city of about 650,000 registered people, we supposedly have about 30 known WG cases, but my kidney doctor admits that he and his partners see a lot of patients in the late stage of kidney failures that actually should have been classified as WG patients and just were not properly diagnosed until it was too late.

[annekat]

All this makes sense to me..... doctors are not aware enough of Wegener's and are not testing for it in time to save people's lives.... and in many cases, years go by when testing could be done and save the person's life. It is a shame. So who knows how many Weggies there really are?

[pberggren1]

Here is a story about a fellow Weggie I know. She is only 11 but so grown up and knowledgable about Wegs.

Rare disease leads to rare friendship | 9news.com (http://www.9news.com/rss/story.aspx?storyid=321044)

[Psyborg]

Geez...poor kids. I can't imagine, but so glad they have each other.

[annekat]

That's a great story and news item, Phil. It does seem like destiny that the two girls met under those circumstances. Maybe it is a one and a million chance that a child THAT AGE will get WG. But we know the odds of getting it are much higher than that. So I sort of wish they hadn't repeated the phrase "one in a million" quite so many times. When something is seen as that rare it tends to get dismissed, once we have heard and appreciated the particular story being shared. People need to know that WG is not as rare as that and that anyone can get it.

[annekat]

Phil, I don't remember hearing much from you lately. Not since discussion of Cindy and Iditarod. I hope you are doing OK!

[pberggren1]

Yes, I'm doing okay thank Anne. Just really busy with the local health board and talking with other doctors. I am changing how things work around here in my health region for the better.

I am feeling better now but was kind of worried last week when I felt a bit tired and achy. But now I feel pretty good again.

I postponed my Bronchial Dilation until April 25 because my sister's mother in law passed away. Very sad. Only 75. My breathing does not seem to be getting worse so I should be able to hold out til then.

[annekat]

Yes, I'm doing okay thank Anne. Just really busy with the local health board and talking with other doctors. I am changing how things work around here in my health region for the better.

I am feeling better now but was kind of worried last week when I felt a bit tired and achy. But now I feel pretty good again.

I postponed my Bronchial Dilation until April 25 because my sister's mother in law passed away. Very sad. Only 75. My breathing does not seem to be getting worse so I should be able to hold out til then. Glad to hear all the positive stuff you are doing, that you are feeling OK right now, and sorry to hear about your sister's mother in law. That is always hard on the whole extended family, and may she rest in peace and her loved ones be comforted.

[vdub]

You,re a good man, Phil!

[pberggren1]

Any one of you would have done the same for your doc I'm sure.

[Psyborg]

I hope the aches and pains are just the weather or the like.

Glad to hear you are having a positive impact on the care in your area! :thumbsup:

[pberggren1]

Trying to get over yet another lung infection. This time I was given Amoxicilin with Clavulonic Acid. Nasty **** that causes diarrhea and throwing up. Been on it 7 days now and today is the first day I actually feel better. The breathing is not really better. I had to go back on the combi vent. It helps a bit, but not much. Fatigue is a bit better. Still pretty weak though.

I think for the next dilation I will start an antibiotic a week before seeing as I usually get one from each dilation.

And I also have the beginnings of Subglottic Stenosis. Lung doc says the Wegs is smouldering. I don't buy that part, but will see what my Wegs doc says late next week. Might have to back on the Imuran sooner than thought.

[Psyborg]

Ug Phil sorry you are having difficulties. I hope you start feeling better soon.

[pberggren1]

Thanks Bob. At least I am fairly sure I am not flaring. I have another 5 days of the antibiotic. Might need more after that.

[Psyborg]

I meant to ask...you are on no immune medication right now (regarding the immuran comment)? With the seriousness of your involvement that is impressive that you got there.

[annekat]

Sorry to hear, Phil. I had hoped your dilation would go smoothly. Taking antibiotics in advance sounds like a good plan.

[pberggren1]

I was on Imuran until my flare in Jan then I quit that and did 4 infusions of rtx. And the plan is to do one rtx infusion every 4 months. And maybe start the Imuran again in October.

I'm tapering pred as well. I'm at 5mg right now and was supposed to go down to 4mg today but will stay at 5mg until I see my doc here.

[Psyborg]

Good Luck to you Phil :)

[pberggren1]

Thanks Bob. I would have thought this dilation would have gone well too cuz I felt pretty good going into it. But what happens is the doc opens up areas that are already infected and would not get opened otherwise and then spreads like wild fire.

[annekat]

If you are down to 5mg pred you are doing better than I! I was down to 10mg but then had a flare and now can't seem to get lower than 12.5mg. Keep up the good work!

[pberggren1]

Ya, the pred thing is different from patient to patient. I know a couple guys in my town that can't get off it ever. They get to 2mg then crash.

[annekat]

Ya, the pred thing is different from patient to patient. I know a couple guys in my town that can't get off it ever. They get to 2mg then crash. Do either of those guys have Wegs? Just curious.

[pberggren1]

Oh yes, sorry. Both have Wegs.

[annekat]

Oh yes, sorry. Both have Wegs. Your smallish community seems to have a lot of Weggies. Did they go there because of your excellent WG doc, or were they already there? Or some of both? I guess it's also that you make a point of knowing as many Weggies as possible. There must be a bunch in my area that I don't know.

[pberggren1]

There are more Weggies out there than we realize. I don't know of any Weggie that has moved here because of my Wegs doc. I do try to get to know other Weggies or know of them. My doc discusses other cases with me on a regular basis. I'm sure there are many other Weggies in your area Anne. Ask your docs.

[annekat]

Oh, I've heard of a few through my docs. But my docs are very inexperienced. I know there must be more, and I have no idea who their docs are or where they are being treated. This is a community of three towns put together and total population including rural areas might be around 150,000, just a guess. I agree with you there are probably more Weggies than we realize, or than even THEY realize. I wish more of them around here were on the forum. They are sure missing out on a lot, and I wonder how much they even know about what they have. I do know one on the forum, who lives within 15 miles of me in a small town to the north. That is Kirk, me2, and we still haven't met but are trying to find a good time when neither of us is too busy or in a flare.

[pberggren1]

There are probably about 30 Weggies in that whole area then.

[annekat]

Hmm, I wonder if they all know they are Weggies? And the ones that do, somebody must be treating them. If they don't read the forum, they might not know about the VF listed specialist centers and all that, and are probably just being treated by whomever, like I am. Or maybe they are going to Seattle to the UW med school teaching hospital, where there is a rheumatology clinic with some knowledge of vasculitis. Or somewhere else in Seattle, which having a bigger population, would have more Weggies. But there are no VF listed specialists around here or in the state. I don't know how I'd go about finding these Olympia Weggies, to ask them who their docs are and how they are doing.... put an ad on Craigslist? This is a pretty spread out area, and the number of people I actually come in contact with is quite a small sample of the population.

[pberggren1]

You could put an ad in the local paper?

[me2]

I'm sorry you are in the pan again Phil- just stay out of the fire ok?
Anne, there is a doctor listed on the Vasculitis Foundation web site for Olympia. I have been meaning to see him. I know someone that sees him for a different disorder and really likes him. I would be glad to be the guinea pig and go see what his qualifications are. His info , as listed on the VF web site is:
Mark W. Layton, MD
Member Type: ACR Fellow Member
Rheumatology
Olympia Arthritis Clinic
1212 Harrison Avenue
Olympia, WA 98502
Ofc: 360-754-6700
Time Spent: Patient Care
Disciplines: Adult Rheumatology



Is this the doctor you are already going to maybe? I don't know what it means that he is on listed on the web site but I thought he might be worth checking out. A lot closer to home than my trips to Seattle. I just finished my second Rituxan infusion a few days ago and things have been a bit rocky- but could be worse too. Boy, could they ever be worse.
I spent the day vertical today so that counts as a good one.

Phil, I hope you turn things around quickly. You've done it before.

[annekat]

You could put an ad in the local paper? I suppose. Our daily paper has gotten pretty lame. I don't know who even reads it anymore. Another idea would be to check for various kinds of support groups at local hospitals, etc., where people with various types of diseases might go to make connections with others.