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Old 02-05-2011, 11:51 AM   #1
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Wegener's Granulomatosis - anyone here?

I suspect that I may be suffering from Wegener's vasculitis. I know it is a difficult diagnosis to arrive at and I am wondering if anyone here knows that they have been diagnosed with it.

Sinus trouble, blood pressure trouble are but a couple of the symptoms.

 
Old 04-14-2011, 08:03 PM   #2
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Re: Wegener's Granulomatosis - anyone here?

Hi,
My dad was diagnosed with Wegners a few years ago.


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Originally Posted by Imarealpill View Post
I suspect that I may be suffering from Wegener's vasculitis. I know it is a difficult diagnosis to arrive at and I am wondering if anyone here knows that they have been diagnosed with it.

Sinus trouble, blood pressure trouble are but a couple of the symptoms.

 
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Old 04-15-2011, 04:56 PM   #3
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Re: Wegener's Granulomatosis - anyone here?

My dad also had Wegner's back in 2002, his doctors had a great deal of difficulty making the diagnosis and treating him. I've heard there are a lot more treatment options now, good luck to you.

 
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Old 04-20-2011, 07:10 PM   #4
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Re: Wegener's Granulomatosis - anyone here?

My father was diagnosed with Wegener's Granulomatosis in May of 2005. He was previously misdiagnosed as having bronchitis and treated with your typical antibiotic. However, his coughing and mucus build up persisted for months until he finally took a turn for the worst. He was admitted into the hospital and after being misdiagnosed as having pneumonia, tuberculosis and hepatitis. They even thought that he may have had lung cancer and did a biopsy which came up negative. Finally buy the grace of God his case was looked at by a nephrologist who was familiar with Wegener's he suggested doing a biopsy of his kidneys which brought them to the diagnosis of this disease. His symptoms were spitting up blood, swelling in the legs and arms and a large sore on the side of his tongue. My father was sedated for about a month receiving oxygen and high doses of cytoxan which we were told at the time had many long lasting side effects yet was the only treatment known to control the disease. According to his doctor the only way to diagnose this disease is by doing biopsies on different organs because the disease attacks a particular organ at a time. According to research symptoms in the sinus is the most common one.

Last edited by damixchic76; 04-20-2011 at 07:11 PM. Reason: wrong word

 
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Old 04-20-2011, 09:18 PM   #5
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Re: Wegener's Granulomatosis - anyone here?

Your post brought tears to my eyes, I had pushed all those memories of dad in the hospital far back in my mind. It was probably not an easy time for you either, so thank you for sharing that information about your father, my dad pretty much went through the same process of misdiagnosis, it was a very painful time but we feel lucky that the hospital did have some brilliant doctors, one of which was able to make the diagnosis and the nurses were absolutely wonderful caring for my dad.

 
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Old 04-20-2011, 09:53 PM   #6
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Re: Wegener's Granulomatosis - anyone here?

Thank you so much for your compassion. You are absolutely right. I think that was the most trying time of my life. My dad for me isy rock. I've always seen him as my Superman so to speak. He and my mom live in Hawaii and I'm in Louisiana. I remember the phone calls and the conversations I had with my mom as she anxiously awaited the results of each test and each diagnoses that was made and talking to my dad that as I could recall was never sick for longer than a day or two be so strong and reassuring to ME. He's going through all the probing and he was actually trying to comfort me. I will never forget the conversation that I had with my dad it was on Father's Day of 2005 he was telling how much pain he was in and I was trying to ask him to be strong and to pray and it would be okay and that I was making arrangement to come home. Then he said the word that I never in my lifetime thought I would hear him say "I'm trying my baby but I just don't know how much longer I can keep fighting". I made him promise me that he would keep fighting because he never broke any promises to me. I took the next flight out to Hawaii and when I got their they had sedated him because 75% of both his lungs had filled with blood. I feared that I would never be able to see his eyes or feel his hugs again. Till this day the thought of Joe close he came to death and me losing him still brings tears to my eyes. Thank God we were blessed with Dr. McCoy who was heaven sent and knew exactly how to treat it. He saved my dad's life and for that I am forever indebted to him. I hope that my dads story helps other people.

Last edited by damixchic76; 04-20-2011 at 09:55 PM. Reason: Misspell

 
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Old 04-21-2011, 11:47 AM   #7
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Re: Wegener's Granulomatosis - anyone here?

My sister was diagnosed with Wegners she is very ill . Doctors also thought she had all these other disease or virus .

 
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Old 04-21-2011, 12:14 PM   #8
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Re: Wegener's Granulomatosis - anyone here?

Does anyone know the prognosis of how long a person can live with Wegners?

 
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Old 04-21-2011, 08:24 PM   #9
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Re: Wegener's Granulomatosis - anyone here?

Quote:
Originally Posted by damixchic76 View Post
Thank you so much for your compassion. You are absolutely right. I think that was the most trying time of my life. My dad for me isy rock. I've always seen him as my Superman so to speak. He and my mom live in Hawaii and I'm in Louisiana. I remember the phone calls and the conversations I had with my mom as she anxiously awaited the results of each test and each diagnoses that was made and talking to my dad that as I could recall was never sick for longer than a day or two be so strong and reassuring to ME. He's going through all the probing and he was actually trying to comfort me. I will never forget the conversation that I had with my dad it was on Father's Day of 2005 he was telling how much pain he was in and I was trying to ask him to be strong and to pray and it would be okay and that I was making arrangement to come home. Then he said the word that I never in my lifetime thought I would hear him say "I'm trying my baby but I just don't know how much longer I can keep fighting". I made him promise me that he would keep fighting because he never broke any promises to me. I took the next flight out to Hawaii and when I got their they had sedated him because 75% of both his lungs had filled with blood. I feared that I would never be able to see his eyes or feel his hugs again. Till this day the thought of Joe close he came to death and me losing him still brings tears to my eyes. Thank God we were blessed with Dr. McCoy who was heaven sent and knew exactly how to treat it. He saved my dad's life and for that I am forever indebted to him. I hope that my dads story helps other people.
Thank God you had such a good doctor for your dad, and thanks for sharing your story! Your parents were lucky to have you as well... My eyes are filled with tears now, our stories are so similar, except that I only had to drive across state to get to the hospital where my dad was. Sadly, my dad could not be saved, he fought hard but this was back in 2001-2002, not a whole lot was known about Wegner's back then. He was lucky to have a Kidney doctor who was able to diagnose and treat him, and overall, everybody at Sacred Heart Hospital was so caring and helpful to us.

I have no doubt that your telling your dad's story is going to help others who are in a similar situation. Medical technology has made so many advances since my dad got sick, and I have to say thank you once again for sharing your story about your dad, it was heartwarming to read!

 
Old 04-21-2011, 08:36 PM   #10
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Re: Wegener's Granulomatosis - anyone here?

Quote:
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Does anyone know the prognosis of how long a person can live with Wegners?

I think every case is different. I can only share what happened in my dad's case. He was diagnosed in October of 2001; spent 2 months in the hospital getting every test imaginable done and ultimately treated with cytoxan and methotrexate among other drugs. He was able to come home for about 4 months but sadly, by April of 2002, he had another attack and had to be hospitalized again. This time it spread to his lungs and central nervous system. We lost him June 2002. I know that medical advances are being made all the time, and I have to think the outlook is a whole lot better than it was in 2002. All the best wishes to you and your family. Take care, Ruth

 
Old 04-21-2011, 08:42 PM   #11
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Re: Wegener's Granulomatosis - anyone here?

Quote:
Originally Posted by iluvmysister View Post
My sister was diagnosed with Wegners she is very ill . Doctors also thought she had all these other disease or virus .
I am so sorry to hear about your sister. It is very difficult to make the diagnosis; we were very lucky that a brilliant kidney specialist had experience with Wegner's, but it took a month and every test imaginable to get the right diagnosis for my dad. I wish you and your family all the best, try to remember to breathe and keep your strength up during this difficult time.

 
Old 04-21-2011, 10:35 PM   #12
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Re: Wegener's Granulomatosis - anyone here?

I am so sorry to hear that. My heart goes out to you and now more than ever do I know just how lucky and fortunate to still have him in my life. I have to believe that we all met for a reason to find the positive in this ugly disease that maybe our stories will help other people to have a fighting chance by brung diagnosed sooner and knowing the symptoms and the proper tests to find the correct diagnose before it's too late. Before my dad was diagnosed we had never heard of the disease and knew nothing about it. I truly hope that we can help others out there who have been diagnosed or have a family member with similar symptoms to know the signs

 
Old 04-21-2011, 10:38 PM   #13
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Re: Wegener's Granulomatosis - anyone here?

Just remember to stay strong and never give up hope and never let her give up hope. My prayers are with you and your family. You are not alone

 
Old 04-21-2011, 10:44 PM   #14
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Re: Wegener's Granulomatosis - anyone here?

The last research that I saw said 7-10 years. However, every case is different. People have been known to surpass this mark. There's no definite answer unfortunately it just depends on the circumstances and the will to live and the will to fight and the blessing of a great doctor or team of physicians. I wish I could give you a more definite answer than that.

 
Old 05-01-2011, 09:31 PM   #15
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Re: Wegener's Granulomatosis - anyone here?

Hi miy sister was diagnosed with this disease june 25,2010. she has been suffering for a long year!!

 
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