Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Aww Alysia, you poor love. How horrible it would be to go through all of that.
I just posted on the other ENT thread, that my ENT diagnosed WG within 5 minutes of seeing him.
He was my life saver and referred me to a City hospital full of specialists, so that I could get the best care.
I saw his son (also an ENT) about two weeks ago at this hospital and told him that his father saved my life.
I really just can't begin to imagine the horrible ordeal that you have gone through.
I hope the new guy is as wonderful as he sounds.
Big hugs to you - I wish we could all get together to keep you safe.
Keep Smiling
Michelle
Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS
After my wife was in the hospital with her lungs full of unknow gunk, we were looking into other symptoms, a month and a half earlier, she had a sudden loss of hearing in her left ear and I came upon this link:
https://www.nidcd.nih.gov/health/hea...es/sudden.aspx
This one said that if you have a sudden loss of hearing, it is a medical emergency, get medical attention fast. I don't know if it would have lead to the discovery of GPA any earlier but she didn't think it was significant at the time. I wasn't until she went to the ER because it was Monday and she didn't want to be on hold on the telephone with her PCP just to get another antibiotic. Her chest X-ray was awlful and all full but the lung docs didn't have a clue. They first suspected something like scarcdosis which is similar and they began a heavy dose of steroids right from the get go. Then they took a Broncoscopy and got a sample to culture. Two weeks later they got a positive diagnosis for GPA (Wegeners) and consultated with a Rheumy about treatment. The principle Lung Doc new the combination of Cytoxin and Pred but the Rheumy changed his Cytoxin dose from two pills daily, once in the am and once in the pm to two pills in the AM with lots of water to avoid bladder damage. The Rhemy felt that an afternoon pill would sit in the bladder too long with out adequate liquid and would not get flushed out.
We also had her see a ENT but he said that it was too late because her ear was dead by that point. So if we knew then what we know now, I still don't think the hearing loss would have triggered the discovery of what was really happening. Now after one year, we would really wish that the human body had a dash board that we could look at to see the oil pressure (white cell count) or the other multiple functions going on or not.
DJS
The doc was good My nose, much less
First, again, I discovered how important it is to go to a doc who knows wg.
He did endoscopy and saw that at one side there are deep inside what he called "adhesions" (I don’t know if this is the word in English) and he said that this is what disturb my breathing from nose. In the old CT he saw that there were such "adhesions" also at the other side of the nose, but they disappear, so maybe we can hope for those to disappear. If not, he recommended a surgery, to cut and open and put a "stent", but not now….
He also said that he saw noses much worse then mine, inside and outside.
he was amazed to see the impact of rtx while comparing CT before rtx and update one.
He said that the nose inside looks much better then he thought it may be considering my diagnosis.
Considering "saddle nose", he said that the bone is intact but the cartilages were "eaten" by wg.
He said that he think that saddle nose surgery can be done while on meds, although he said that the damage can returned again.
I now have really good ENT. He gives me more then an hour, was gentle and professional and was also glad to have me, he called his intern to join us, introducing me proudly.
It seems there are not many known weggies in Israel. I hope they are not dying somewhere without being dx.
I'm glad that I finally have good ENT doc. but I'm also sad and tired
Thank you for "listening".
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Thanks for sharing your experience, the good and the bad, with us, Alysia. I'm so glad you finally have a good ENT who knows Wegs. I wonder, too, how many Weggies there really are in Israel who don't know they are Weggies! That is a sobering thought. I can only hope that awareness of WG and other vasculitis and rare AI diseases will increase everywhere in the world.
Anne, dx'ed April 2011
I love your new profile picture. you are a beautiful girl. After a series of mistakes and some bad surgery I was left with no nose and when they gave me prosthetic noses they were so ugly and the glue you use to keep them on attacked my eyes and I lost my vision for a year so I have to wear a patch every day and night-. I never take it off and when I take the bandage off and see what I really look like it makes me cry. I have gotten used to being started at like a circus animal and lead a normal life. My husband has been fantastic through the whole thing, I never felt unloved. This is my life and I will make it as happy as I can.
My blog: Animo
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Alysia,did you go to your new ent yet if so how did it go ??
Life isn't about how you survive the storm, but how to dance in the rain !
Hi Debra,
great picture ! you look awosome and cool
so nice to see you.
lately there are more and more pics here, and it is so nice to see the face behind the name.
i wrote in this thread about the visit at the new doc, please read my post from 7 aug.
thank you for your concern
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
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