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Thread: And quiet flows the wegeners ....

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    Default And quiet flows the wegeners ....

    AND QUIET FLOWS THE WEGENERS …..

    I start with a note of apology since I had been quite late in redeeming my promise to share my story with the Group. But as they say, better late than never! So here goes.

    I got drafted into the league way back in mid – 1989. (Hope I am not sounding like an ancient mariner here!) My entry happened in copybook style - at the median age of 40 with emission of few drops of blood from my ears at night. That prompted a visit to an ENT specialist. He was clueless. Very soon I became partially deaf in both ears. When the infection was contained in some weeks in a hospital, the Nasty One (what else can I call it?) turned its attention to my lungs. Soon enough, I got stricken with persistent low grade fever accompanied by coughing bouts and sputum speckled with traces of blood. I was then diagnosed with a form of non- resolving pneumonia, which revealed large patches in my lungs after some X - rays. This led to my second round of hospitalization. By then, I was swallowing a whole lot of broad spectrum anti-biotic drugs. Stomach was always on growl and thoroughly constipated too! I even took Rifampicin on a prognosis that I had a remote form of TB. Imagine my shock, when I saw my urine turn to a golden yellow! No one had bothered to advise me on that aspect.

    With no palpable relief in sight, I got shifted to yet another hospital (a big one) with a battery of units, manned by a whole lot of specialists. I got tossed around between ENT, Chest, Nephrology, Urology, Pathology, Cardio-thoracic surgeons and what have you. Slowly it dawned on me that I had become a guinea-pig in their hands. It wasn’t that I was terrified, but well and truly perplexed and irritated by the fact that no doctor had come forward with any discernible label to my disease, despite months of hospital stay.

    In this hospital, the senior cardio-thoracic surgeon started prodding me about my smoking habits, which I had given up a decade earlier. I got the faint drift of what he was alluding to. One day he calmly announced to me that I need to go under a knife (his knife that is) very shortly. By now I was at my wits end and ready to go to any length so as to get a grip on my mystery. Post-surgery, which was done on Oct 25, 1989, I came to know that he had performed a ‘Segmentation’ of my upper right lobe. Lung cancer was ruled out by Pathology, which was the obvious reason for this chopping act. I still recall those days, when I used to perform my mandatory walks after the surgery, with a nurse right behind me holding a large bottle (or was it two?) for venting out air bubbles from my lungs. It took some weeks to come out of this pain and misery. Everyone thought that I had made a good recovery, with no relapse of my previous symptoms. I got dispatched home.

    But my predicament was that I wasn’t given a true and proper discharge yet by whom it mattered – who else but the Nasty One! Soon to my dismay, I was back to most of my previous symptoms. And what were they? Bleeding from various orifices of my body, inflamed eyes, crusted nose, low grade fever, joint pains and a chronic sense of fatigue, though not all necessarily together. But a big plus point was that while my operation was unnecessary, the Pathology could develop many slides, which were liberally distributed within the country and abroad. I suspected that this kind act had more to do with the medicos wanting to avoid the quizzical gaze emanating from my face and beaming steadily at them!

    And Finally It Happened! The specialists at last came to the unanimous conclusion that that the Nasty One was nothing but WG. And, boy was I not relieved? In a weird sort of way, smug too, to have a disease which took time and effort to pronounce – Wegener’s Granulomatosis!! Not a measly sounding word, right? Remember, those were the pre - internet days. One had to seek out the obscure medical text books for incomprehensible diseases in a determined sort of way to ferret out information!

    Armed with this irrefutable piece of clinical evidence, yet another specialist, this time from a different city and really good too, if I may add and an expert on Sarcoidosis and WG, advised me to take a daily dosage of Endoxan ( 200 mg ), Prednisolone / Wysolone ( 60 mg ), Trimethoprim, coupled with some more drugs and supplements. My face soon became moon - like and I got ravenously hungry all the time, thanks to the steroids. Endoxan took away my need to use the comb . For the first time, I was taking the right medicines (right for my illness, but highly toxic otherwise) and could feel a rapid improvement. A sense of liberation at last, after many months of frustration. I started on these drugs in Feb 1990, gradually tapering and went completely off them by 1994 / 95. The first ANCA test done in 1992, showed negative. I have been in complete remission since then.

    So that is my story in a nutshell. I too had gone through this muddle called WG, for a long stretch of time. But I was fortunate enough to have been watched over on 24 X 7 basis by my dear wife. Through all those wretched days spent in hospitals, she was taking care of my medicines & diet and made me drink copious amounts of tender coconut water, which I guess would have flushed out the toxins from my body. Not only that, she used to frequently engage with the doctors on various investigations and lab reports to know what was going on. Our two young children were not able to comprehend much of what was happening to me then. There was wonderful support from all around. The doctors too could finally nail the problem before it was too late. The only impact which still remains with me is some hearing loss in both ears.

    Well, all that is past. 25 years is a long time. Or is it? As Al put it very nicely – “here we are, until we aren’t”. But until then, let’s do all that we can to bring happiness to our lives and to our dear & near ones. Remember – one life, do more. Whatever that be, as long as it brings joy to you.

    Thank you for your time.
    Ravindran

    PS: I must confess that I was never good at précis writing while at school and that was ages ago. So if this post had gone on and on, I seek your pardon for the second time. Or else, Andrew can give me a knock on my knuckles !

  2. #2
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    Thanks for sharing, Ravindran. And on here there is an unwritten rule that we can take as many words as we want to say what we want to say. Yes, 25 years is a long time! Congratulations on being apparently free of disease activity for so long.
    Anne, dx'ed April 2011

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    Wow, 25 years! What an inspiration. And what a wonderful wife, you are lucky, indeed. I enjoyed your writing style and hope to hear from you again. We all long for remission and love to hear encouraging news.

    Continued good luck to you!

    Lisa

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    That was a wonderful read Ravindran. I'm glad you finally got around to your story.

    The days before internet, my goodness, we never really knew back then how difficult it was, or how easier it is now to get information.
    I still have my encyclopedia set on my bookshelf and have been known to look something up in them occasionally, but the internet is so much easier.

    I'm not sure how I would have gone if I was diagnosed pre internet and not being able to have this forum and being able to meet with others that have the same condition. Social media has some wonderful advantages too.

    All the best
    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

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    I loved your post! Encouraging to hear you are still in remission.
    - You can judge the character of a person by how they treat those who can do nothing for them.

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    Do you take any maintenance type drugs ??

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    Thanks for your story. It was very interesting. I guess they have come a long way with this disease since then, yet it took two years for doctors to figure out I had it.
    Karen; dx'ed April 2014

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