WTC First Responder and my first post

[Age]

It's about 7:50 AM I'm sitting here in my hospital bed waiting for the chief of pulmonology to talk to me about my EBUS this morning and reading posts. I can honestly say I was less afraid taking guns from bad guys as an NYPD Detective then I am of reading these posts, but I can't stop myself. I don't have the heart to give you my full story now waiting here for this damn test, but I will when I can start wraping my mind around this curse. Short synopsis for now is that I had a PET/CT about two weeks ago and my kidneys and lungs lit up like a Christmas tree, my pulmonologist Dr. Caruso who I can honestly say I now love, pulled this amazing diagnose out of his magic hat and said that he had never seen cancer in both kidneys and he really believed that it was wegs or goodpasture, because he had a case 25 years ago, so he did a blood test, not to sure what it was I think ANCA, and it tested 100 percent. Meanwhile I continued with my needle biopsy of the kidney nodules waited another week not really believing it was a rare disease but more like stage 4. The results on the needle biopsy were again Wegs, what a call Doc, I love you man. In the meantime while waiting for all these tests time is passing and I am having really bad pains in all my joints, my neck, fatigue, and kidney pains. I'm making this longer then I thought I would because I'm still waiting for my test ( I hate hospitals) by the time I got into his office on Wedsnesday it felt like someone was stabbing me in the chest and ripping the knife down into my left kidney. The official report was not written out yet so Dr. Caruso called the pathologist and confirmed it over the phone, and would not let me go home and admitted me. So here I sit for five days on 80 mg of steroids feeling so much better waiting for this EBUS because all these so called specialist have never seen wegs light up on a PET scan, and since the pet was done about three weeks ago, a large mass has grown around the lymph node in my lungs, and they want to be 101 percent sure it's not cancer also, can never be too sure! I've been a cop a long time, I apologize if I'm a little cynical. I was told I will only be the second person certified with Wegeners Granulomatosis as a 911 disease, and I truly believe that, and I think anyone else would too if you saw the stuff I was breathing down there for 12-18 hrs a day for weeks on end, with only a BS paper mask, after having no mask the first few days. I am also seeking a favor I would really love to talk to the other person that was certified, if by chance they are on this forum, and anyone knows of them. I am in New York, and again I really apologize for the long rant, I guess I don't have to go into the full story anymore, since I basically told it.

Thanks for reading
Age

[MaxD]

Glad your docs suspected and caught Wegs in time. As you probably know by now, it's a rare disease (one in 30000 or so) and who knows what triggers it? We'll never know if it was conditions at the WTC or not. Presumably epidemiologists are poring over data and will learn something in time. So, be proud of your service - thank you - and look forward. The prednisone will make you feel like superman at first, the other meds will kick in to bring you into remission, and then you will slowly overcome the side effects of prednisone. So, be kind to yourself - give the body plenty of time and rest and see your docs regularly. The vasculitis foundation is a good resource (Vasculitis Foundation) and NYC has some of the best Wegs docs.

Good luck, and stay in touch - we welcome rants and all.

[Pete]

Hello Age!!

Welcome to the "club". It sounds like you have a perceptive doc. Hope he takes good care of you!

As Max said, there are some world class wegs doc's in New York - if you need them. I echo what Max said about taking good care of yourself.

Thank you for your service at a time of grave crisis.

[Dirty Don]

Welcome Age...first of all, I salute your service, then & now. Tough days for cops, then again cops are tough, right! So, that brings us to now...certainly you have WG & a very smart doc! You'll learn to at least 'like' hospitals, especially if they save you as they did me. My lungs looked like broken crystal with little dark spots in about half a dozen places when I went in finally...had to be taken to ER...don't remember much until 10 days later in ICU...but, after the same pred doses for at least 17 days, my lungs cleared up, seemingly on their own. Never had any other organ affectations, but sinuses are hamburger now. 4 years later I am off drugs, in a remission (have graduated to the 40% who are likely to relapse within 2 years...better odds I guess!), with paranoid tendencies about infection!! LOL...not funny, but you'll learn to laugh a bit at this stupid disease as you progress...at the very least it's irritating, at worst it's a killer. Ranting is good, but keep the BP under control! It's a stage as you'll learn...this disease will take you for a ride. So, follow your doc's protocols, be as patient as one can be, don't worry that others don't get your new normal...and stay the course...keep in touch with many on here as there is a lot of understanding, experience, and caring on this blog...it's the best. And, my best to you. Here's some spoons...yes, you'll learn about the 'spoon theory' soon enuff!!!

[Age]

Thank you all for responding, I feel better already just to know I can talk to people that get it, by the way they cancelled my endobronchial ultrasound because there is only one attendant in the hospital that can perform the procedure and after days of waiting they figured out it wasn't possible because of scheduling. So one more week to wait and back as an outpatient. Tick Tock Tick Tock .


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[annekat]

Welcome to the forum, Age, and thank you from the bottom of my heart for your service at the WTC site and everywhere else you have put your life and health on the line. I make pottery and have been exposed to silica dust over the years. That is a ridiculously lightweight activity compared to what you did for all those long days for weeks on end. Yet it is possible that it contributed to my getting WG. I will never know, as there are so many other possible triggers, and I was probably genetically predisposed to getting it. In your case, though we would usually say it couldn't be proven for sure that that was what caused it, it certainly sounds like a good bet... Either way, it is great you found us here on the forum, and I hope it will put your mind at ease to know that for most of us, once WG is gotten under control, it becomes quite manageable with adequate monitoring, and we go on to resume our former activities and live a fairly normal life. There is even a woman on here who has climbed Mt. Everest and run the Iditarod sled dog race in Alaska after a WG diagnosis. Not that most of us would ever dream of doing those things, but it is possible, and there are other examples. Right now you are in the hospital in the throes of recent diagnosis and beginning of treatment, and we all remember that. It sounds like you have great docs, and before long, we'll be hearing about how much better you feel. I wish we could help you with the name of the other person certified with WG as a 911 disease. It doesn't ring a bell, but it would sure be great if there was a way to find out. Meeting another person with WG is a profound experience, and especially if you have both been through that whole 911 aftermath, which none of the rest of us can even begin to imagine. Please keep us posted on your progress and use us as a sounding board for any of your emotions or frustrations in regard to all of this. That's one of the things we are here for.

[MaxD]

Thank you all for responding, I feel better already just to know I can talk to people that get it, by the way they cancelled my endobronchial ultrasound because there is only one attendant in the hospital that can perform the procedure and after days of waiting they figured out it wasn't possible because of scheduling. So one more week to wait and back as an outpatient. Tick Tock Tick Tock .


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I know you trust your doc who diagnosed you and that's great. But make sure to see a Wegs specialist asap and/or get your doc to coordinate with him/her. Dr Robert Spiera in NYC is an expert, a really good person, and works with other docs (I speak from first-hand experience).

What's the bronchial ultrasound for ... does the pulmonologist suspect additional complications or it's just what he always does, poking inside lungs?

[Birdie]

five days on 80 mg of steroids feeling so much better

While the Wegener's diagnosis sucks it's not nearly as bad as it could have been. Sorry that's the best encouragement I can offer. At least you found the best place to find answers for everyday questions.

I'm going to tell you what I wish someone had told me when at the point you're at.

1) Don't be too disappointed, prednisone is a roller coaster ride. 80 mg of prednisone makes you feel great but it doesn't last. You need it now but they'll taper off the prednisone as soon as the high dose has done it's job. It makes your mind race as long as you're on it at high dose but your body wears down, so beware there is a crash coming. Fatigue will replace the euphoric feeling of wellness and the positive physical effect wears off in a few weeks.

2) The high metabolism due to prednisone will have you eating like crazy and your body burns that extra food due to the higher metabolism. Most people still gain a lot of weight. Some weight gain is OK. Just watch it, don't let it get to be too much because it's very hard to lose later. I weight myself everyday and decide what to eat based on the trend.

3) Wegener's is very survivable. Uh, huh, nobody told me that. I didn't really know until I found this forum more than three years later. No doctor can provide what you can get right here... any more than this place can provide what a doctor does. Both have value.

Hope that's all of value to you, feel free to continue ranting at any time.

Gary

[Birdie]

So one more week to wait and back as an outpatient. Tick Tock Tick Tock

You can relax a bit on the Tick Tock thing. You've been diagnosed and started treatment. That is usually enough to stop more damage and allow repair of existing damage. My lung involvement was almost gone in a couple months, no sign of it in six months. Vascular and a whole bunch of soft tissue damage was healed much faster than that.

You mentioned 80 mg of prednisone, have they started anything else for Wegeners treatment? Cytoxin (Cyclophosphamide) is one of the most common, paired with the prednisone. It's very effective short term but must be switched to another option for long term treatment.

[Age]

Don, the EBUS is a specialized bronchoscopy instrument used to go down your trachea look around with a chip that has an ultrasound on the end of it, looks around your lung like a little worm squirming around, finds its tender morsel, snips a piece of lung, brings it up to the pathologist who does a quick cancer check on it, then this particular doctor with absolutely no personality, who is probably also a genius, and has also the talent to put an extension on it and go even deeper into the lung looking for even deeper nodules. Apparently I also have a very large lymph node in my lung that according to the highly professional physician with the bland look on his face stated to me "was highly suspect" for not being wegs, and could also be something else as well. I will also need that extension because he saw a deeper nodule that he wants to possibly snip. He is the only Doctor in this pretty prestigious hospital on Long Island that can perform this procedure, I waited four days in the hospital for this biopsy on meds to be bumped, and come back as an outpatient next week. That explains my Tick Tock comment.