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Re: The scariest 14 months of my life and then Wegeners
Thanks for your response Vera. This will be my 7th Rituxan treatment so I do expect to be feeling better soon. I hope you’re off your Prednisone soon. Since you’ll read my book perhaps I will get on with it sooner.
Being on this forum confirms what I’ve learned as a Vasculitis patient & as the mother of a Vasculitis patient for 20 long years of this - dealing with this disease requires infinite patience and requires the ability to act quickly at times as well. I realize I was too patient with my Nashville drs & waited too long to seek proper care. It’s very difficult to put up with ignorance from our doctors and all too easy to become defensive.
At one time I was a premed student and worked in the field. This has given me a few skills to research with but hasn’t made it much easier to be a patient.
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Re: The scariest 14 months of my life and then Wegeners
Hi Veronica!
I’m sure it’s surreal to have all this happen to you and so quickly! It’s odd-no one understands what your going through & can feel very lonely. Then you found us! Welcome!
I honestly don’t remember how I felt before getting this disease! I have had it over half my life. The longest I have been off medication is 4 months since then. That being said this disease can quite easily take over your life. I work hard to try and live as normal a life as possible. I hope all these awesome people here have made you feel welcome & you do not feel so overwhelmed and alone.
Natty
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Re: The scariest 14 months of my life and then Wegeners
The most important lesson I learned from my experience in dealing with Wegs was to trust your instincts and persist until you get an adequate explanation and diagnosis for whatever symptom or issue is causing you concern. I spent a couple years chasing my initial symptoms of Wegs by going from one specialist to another without getting any help or correct diagnosis. I have also had to fire a few doctors and search for better ones to get the care I believe I need and some times it is very difficult to find good care and get the help you need. I have in the past got bad advice that would have been very dangerous for my health if I had followed it but I was lucky and able to find a better resource and get the right care to avoid potentially serious problems. But some times it is hard to know which advice is best for you especially when it conflicts.
Many years ago I had an infection in my mastoid from a recurrent cholesteatoma. One doctor said if they operated on it before the infection was cleared up it would go into my brain and kill me. Another surgeon said if they didn't operate soon it would spread to my brain and kill me. So I got a third opinion from my local family doctor who admitted he was no expert or ENT surgeon but he and I thought the operations was the best option so I did it. Later the first surgeon admitted he was having a bad day and had me confused with other patients he saw that day who only had a few months left to live.
I once sought out a new doctor telling them about my problem or concern for which other doctors had no explanation and challenging him by saying other doctors have told me what it isn't but I need someone smarter or someone willing to work harder to find out what it is and tell me what i need to do about it if anything. It took him a while but he sorted it out and relieved my concerns.
My litmus test for a good physician is some one who can listen to me and respects my opinions and preferences about my care,and is willing to consult with other experts who may have more experience in dealing with the issue at hand. A good physician is aware of their limitations and willing to refer you or consult with other experts about your care. I believe I am alive today only because my care team consulted with several national GPA experts about my care and used their recommendations.
I believe we need to be able to trust our care team in order to get the maximum benefits from our treatment.
Last edited by drz; 12-18-2018 at 11:30 AM.
Knowledge is power! Wisdom is using it to make good decisions!
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Re: The scariest 14 months of my life and then Wegeners
Originally Posted by
NatriceRomeo
Hi Veronica!
I’m sure it’s surreal to have all this happen to you and so quickly! It’s odd-no one understands what your going through & can feel very lonely. Then you found us! Welcome!
I honestly don’t remember how I felt before getting this disease! I have had it over half my life. The longest I have been off medication is 4 months since then. That being said this disease can quite easily take over your life. I work hard to try and live as normal a life as possible. I hope all these awesome people here have made you feel welcome & you do not feel so overwhelmed and alone.
Natty
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Hello Natty,
Thanks so much for your reply. It gets me so sad For your only 4 months off meds. I really wish in the near future you can be off longer than that. But im sure since you have had this for so long its so much easier now that you are probably used to it. I’m really fighting with this emotions And to be stronger. I really pray to get finally centered and used to all this pains and feelings. So I can win this mentally. I want to be strong! I did see so much love and comfort among you guys! Thank you. When I feel really bad I just open the posts and I re- read all your replies to feel better and to remember I’m not alone. Hope you are feeling good.
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Re: The scariest 14 months of my life and then Wegeners
Originally Posted by
drz
The most important lesson I learned from my experience in dealing with Wegs was to trust your instincts and persist until you get an adequate explanation and diagnosis for whatever symptom or issue is causing you concern. I spent a couple years chasing my initial symptoms of Wegs by going from one specialist to another without getting any help or correct diagnosis. I have also had to fire a few doctors and search for better ones to get the care I believe I need and some times it is very difficult to find good care and get the help you need. I have in the past got bad advice that would have been very dangerous for my health if I had followed it but I was lucky and able to find a better resource and get the right care to avoid potentially serious problems. But some times it is hard to know which advice is best for you especially when it conflicts.
Many years ago I had an infection in my mastoid from a recurrent cholesteatoma. One doctor said if they operated on it before the infection was cleared up it would go into my brain and kill me. Another surgeon said if they didn't operate soon it would spread to my brain and kill me. So I got a third opinion from my local family doctor who admitted he was no expert or ENT surgeon but he and I thought the operations was the best option so I did it. Later the first surgeon admitted he was having a bad day and had me confused with other patients he saw that day who only had a few months left to live.
I once sought out a new doctor telling them about my problem or concern for which other doctors had no explanation and challenging him by saying other doctors have told me what it isn't but I need someone smarter or someone willing to work harder to find out what it is and tell me what i need to do about it if anything. It took him a while but he sorted it out and relieved my concerns.
My litmus test for a good physician is some one who can listen to me and respects my opinions and preferences about my care,and is willing to consult with other experts who may have more experience in dealing with the issue at hand. A good physician is aware of their limitations and willing to refer you or consult with other experts about your care. I believe I am alive today only because my care team consulted with several national GPA experts about my care and used their recommendations.
I believe we need to be able to trust our care team in order to get the maximum benefits from our treatment.
Hi Drz,
Wow... what a story. To think you had to go through all that. And I was here complaining about my bad luck with one doctor. We do deserve the best when it comes to hard diagnosis. I mean it’s a lot to handle only to deal with it, the least they can do is treat us the right way. My Kidney specialist was also bad. I agree in a team of experts communicating for a treatment. The kidney specialist refused to call anyone. I also believe we need to trust our doctors and we need to find them. I have a lot of research to do still.
Thank you!!!!
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Re: The scariest 14 months of my life and then Wegeners
Veronica, here is some encouragement: l got WG when I was 34 in 1981, 37 years ago. I am now 71. I had relapse in 2008, 2010, and last month. I am on Prednisone again and had Rituximab infusion last week. Doing pretty good. Overall I am healthy. Lost some kidney function (37percent left). I have an active life. Right now am having some breathing/wheezing issues and weakness. My doctor is an expert Rheumatologist in Dallas, John Cush. I know the symptoms and get labs regularly. I may be one of the longest living. My email is:
[email protected]. There is hope!!
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Re: The scariest 14 months of my life and then Wegeners
Mike,
Your thread is wonderful. I have read threads from recently diagnosed people, who have young children and fear they will not be there to see them grow up. Your long term experience will surely give them encouragement. I, too, am of the silver generation-69 next month. I was not diagnosed until several years ago, although my doctors feel that I have had this disease for years. Yes, you are certainly the longest diagnosed patient I have heard. Good doctors make all the difference. As drz says we must be our own advocates when it comes to our doctors and our own health. We live as fully as we can, being cognizant of triggers. Mine is centered in the sinus and mouth, have also had more than my share of pneumonia. I avoid large crowds like the plague, because for me it is the plague.
Thank you for sharing your experiences. I am sure many read it and now see there is hope, and life with Wegeners.
Masha
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Re: The scariest 14 months of my life and then Wegeners
Originally Posted by
Masha
Mike,
Your thread is wonderful. I have read threads from recently diagnosed people, who have young children and fear they will not be there to see them grow up. Your long term experience will surely give them encouragement. I, too, am of the silver generation-69 next month. I was not diagnosed until several years ago, although my doctors feel that I have had this disease for years. Yes, you are certainly the longest diagnosed patient I have heard. Good doctors make all the difference. As drz says we must be our own advocates when it comes to our doctors and our own health. We live as fully as we can, being cognizant of triggers. Mine is centered in the sinus and mouth, have also had more than my share of pneumonia. I avoid large crowds like the plague, because for me it is the plague.
Thank you for sharing your experiences. I am sure many read it and now see there is hope, and life with Wegeners.
Masha
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Re: The scariest 14 months of my life and then Wegeners
You’re right Masha, it’s not an easy journey and as a mother who has had a young child grow up with Vasculitis it’s terrifying. However our story is one of survival and encouragement to share with others. Physicians speak of treating us all for life and you speak of the importance of being our own advocates and of finding good doctors. I’m not a very good advocate really as it took at least 15 years for my son to be diagnosed and 10 years for myself - the disease took a toll over those untreated years. I still struggle with the “good” doctors part and am making appointments at one of the major centers as I write. Survival is it’s own reward at times although there are times the pain and suffering are overwhelming. Our own family has lived as normal a life as possible under the circumstances. My son has been one of the best musicians of his generation from before he was 5 (singer, songwriter, guitarist & recording artist) who has 4 albums out but the ravages of illness have precluded “true” success - he gets back up to succeed again only to fall. He’s worked with many of the “major” artists in Los Angeles & in Nashville in a constant struggle. We are going to tell our story although we are very private people in order to be of help to others.
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Re: The scariest 14 months of my life and then Wegeners
This recent flare, per my Rheumatologist, is indeed Wegeners. But he has referred me to lung doctor who believes I also have severe sinusitis. She sent me for CTscan of lungs and sinuses. The CTscan shows severe sinusitis throughout sinuses with extreme blockages caused by polyps. She referred me to a Rhinologist ENT who said I had to have surgery to prevent breathing and future infections. So next Friday I will have this surgery. Hopeful that this will solve some problems Also on antibiotics for over two weeks and have been on Prednisone and recently had two Rituxin infusions. Today I feel great. Sharing this so you guys might consider CTscan of sinuses. I was shocked how much blockage could be so clearly seen throughout my head. I had two similar surgeries in early 1980’s. But new technologies/mini cameras are now helpful to make this surgery easier. Much of this sinus problem has been cause by WG. FYI: I have learned it is important to see an ENT who is a Rhinologist who is knowledgeable about WG, rather than a regular ENT. CT scan is imperative. I have had WG for 37 years! I am now 71.
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