Wegener what?

[survivor]

When you are new among strangers, in my country we have a saying: you feel like Adam in Mother's Day. That's how I feel now. My name is Enrique, and I am from Montevideo, Uruguay, a very, very small but large hearted country. I am married (twice, but not at the same time) and have five children, three by my previous marriage. I am a gas systems designer, and I run my own company of gas installations. In January 1993 I was hospitalized with a very bad case of hemoptisis, and everybody, including my doctors, took that symptom as lung cancer. Before that, I started to have severe dizzyness, impaired hearing and loss of muscular mass. After 25 days in the hospital, and lots of tests, all the symptoms disappeared, and the head of the team of doctors that took my case came to my bedside and told me that they were discharging me, but he was sorry I should leave undiagnosed. They did not know what I had, and did not understand why the sudden change of my health condition. I left, and that night my family and I had a nice party celebrating that I had not cancer. From then on I had an uneventful health history, and never took any medication. In December 2008 I started with a light case of hemoptisis, and on the 27th of that same month I woke up without being able to utter a single word. I checked with an ORL, who blamed my condition on gastroesofagic reflux (is it the right term in English?) I more or less regained the ability to speak, but with a coarse voice, and then, on Feb. 28, 2009 my glottis collapsed on my larinx and I almost choked to death. I arrived uncounscious to the hospital and awoke three days later with tubes in my mouth and nose and my left arm. I stayed hospitalized for 45 days and again the doctors did not know the reason of my ailments, which now included a slight kidney insufficiency and two lung nodules; I remember they were treated separately. Then a doctor friend of mine insisted that I saw a very good internist in the same hospital, Dr. Cichevski. This physician came to my bedside with my medical history and started to ask me questions about my previous hospitalization. Two days later he came with the diagnosis: I had WG. I asked my wife to download information about this ailment from internet; the very first words I read were: Rare disease with a dreadful diagnostic. I did six months of CF, together with massive doses of pred; then I switched to 2 grams dayly of CellCept and started to lower the dose of pred. Now I continue with 2 grams of CC and 5 mg (day in, day out) of pred. I feel wonderful and try not to think too much about Dr. Wegener. I love life, my children, my wife, my books. And believe me, I love the people who, like all of you, struggle with all their strength to carry a normal life despite, well, despite Dr. Wegener. I am also from down under, and that's why I talk funny.

[pberggren1]

Welcome to this site Enrique. Or should I say Mucho Gusto.

I took a small Spanish course last year. I have not followed up or practiced at all. I went to Spain once and met some people there from Columbia, Uruguay, and Venezuela. My Spanish teacher is from Columbia. Where I live in Canada there are a few people from Columbia, Mexico, and other Latin American countries.

I am glad you are feeling well right now.

Cuanto anos tiene sus hijos?

I am sure you speak just fine. Your written english is very good.

Hasta la vista. Chao.

[Jack]

Hi Enrique and welcome to the site. :)

If you have read many of the threads on here you will have realised that Wegener's is not a predictable disease and affects everyone differently. It sounds like you have been lucky enough to escape without much damage, but you must stay alert. It is a sneaky disease and has a nasty habit of relapsing just when you think it has gone forever. The faster you catch any change in your condition, the shorter the treatment to put things right again and the less permanent damage you are likely to suffer.

Hope you continue to do well and can reduce your medication to a minimum. Sometimes the drugs are nearly as bad as the disease!

[elephant]

Hi Enrique! So glad you got good care. You must have a good doctor. IS it your primary doctor who is watching over your care, and does he consult with a Wegeners specialist? Again sounds like your doing great!

[Sangye]

Welcome, Enrique-- I think you have honor of being our first member from South America. I agree with everything Jack said. It's amazing that you went for 15 years with no active disease or symptoms after your lungs were hemorrhaging in 1993. That's not typical at all! I'm really glad things are going well for you now. :)

[JanW]

Welcome, Enrique - nice to see you on the site. I have SS too -- but luckily mine did not collaspe before it was caught. Have you had changes in the appearance of your nose as well? I have a saddle nose, which is sometimes seen in those of us with subglottic stenosis.

[Brooke]

Welcome to the group Enrique, it is good to hear that you have been doing well for such a long period of time!

[survivor]

No JanW, my nose did not change its appearance at all. I consulted with a doctor (not my primary doctor, but an especialist in autoimmune deseases) who told me that at this stage it is improbable that I develop saddle nose. Thank you for your post JanW; you and all our co-members are now in my thoughts.

[survivor]

Mucho gusto is quite all right, pberggren1. My children, from my first marriage, are Silvana, who is 41 now and has two daughters; Eduardo, 37, has one daughter; Federico, 34, is still single. Now I am married to Alicia since 1987 and have two sons, Gonzalo, 21, and Ignacio, 20. Thank you for your flattering words about my written English. Do you want to know which was the compliment that left me feeling really great? Some twenty years ago I was in New York on a business trip and had a long conversation with an importer. When I was about to leave he asked, "You are English, aren't you?". See you soon (hasta la vista), well, at least your photograph.

[survivor]

Hello Jack, and thank you for your advise. Yes, I read many threads from which I learned that this desease is, as you describe it, a sneaky one. And your are right, not all sufferers are affected the same way. When I asked my doctor why I did not die with my first encounter with WG, he said, "I don't know". And perhaps nobody knows. Thank you again, and as I said to pberggren, I'll see you soon. . . I mean, your photograph.

[survivor]

Hi elephant. Believe me, I am glad too! Dr. Cichevski is really a good doctor, but most of all he is a conscientious doctor. He does not leave aside any clue about an illness and is quite willing to spend (as he did with me) two hours questioning me about symptoms, feelings, and so on. I met him at the hospital, and I was referred to him by a good friend of mine, Dr. Fugasot, who is an ORL. Dr. Cichevski just knew there was an illness that was called WG and its symptoms, but had not ever treated a case of it. He was frank about it, and he consulted with WG especialists on the internet to choose the best medication for me. Yes elephant, I am doing great, and feeling great. See you soon.

[survivor]

Brooke, I said thank you many times now to those members that saluted my presence in the group, and I will say thank you to you again. But believe me, every time I said it I meant it. I hope we'll share our experiences often.

[Lola]

Welcome, Survivor. I am glad you found us for our sakes. You have much to offer, and you sound like a very happy, positive person.

I am curious about your dizziness. Was that part of the Wegener's disease do you believe? Was it true vertigo, whereby the room spins and causes horrible nausea? I've had that symptom twice - the first time was in 1990 before I was diagnosed.

Unlike Phil, I only know a couple of Spanish sentences: A Carlos no le gustan las legumbres, ni a mi, tampoco.
I believe that says that Charles doesn't like his vegetables, and neighter do I...but I could be way wrong!

[pberggren1]

That sounds right Lola.

[Cindy M]

Welcome Enrique, It sure sounds like you have been through alot. This disease has a mind of its own. I am glad that you were able to get through your first round with Wegs.

[survivor]

Welcome, Survivor. I am glad you found us for our sakes. You have much to offer, and you sound like a very happy, positive person.

I am curious about your dizziness. Was that part of the Wegener's disease do you believe? Was it true vertigo, whereby the room spins and causes horrible nausea? I've had that symptom twice - the first time was in 1990 before I was diagnosed.

Unlike Phil, I only know a couple of Spanish sentences: A Carlos no le gustan las legumbres, ni a mi, tampoco.
I believe that says that Charles doesn't like his vegetables, and neighter do I...but I could be way wrong!
Thank you Lola for your words. By the way, Lola is short for the very Spanish name Dolores, which means "pains". It derives from the ancient name Dolores de María (Pains of Mary, Mother of Jesus).
Ok, my dizziness. It started in August 2008, and, more than anything, it was a nuisance. I was told that it was a consequence of my hearing loss, which was increasing with time. Then, in September, while I was reading, seated in an armchair and not moving at all, the whole building started to collapse. I grabbed the armrests, as I tried not to fall through a hole in the floor.
My God, it was nasty! Then they became more and more common, without any prior symptom that announced them. Three times, while I was driving, they struck. Every time they were more pronounced, but never lasted more that one or two seconds. And with them came the nausea. Not once, but many times, while I was on the street or talking with someone, I had to look for a place to, well, relieve my stomach. One particular thing: while I was struck with vertigo I never lost consciuosness. The most painful experience was when I was talking with one of my sons and a friend of his and all of a sudden I fell backwards and opened my scalp and needed ten stitches.
Vertigo is now completely gone. A doctor friend of mine, who is a specialist in autoimmune deseases, told me that indeed, vertigo is part of the desease, although the mechanism that triggers it is not entirely known.
No, it is not wrong; your translation, as Phil says, is quite right. Maybe I should start a Spanish course for my fellow members, provided you do the same for me.
And one more thing: A Carlos no le gustan las legumbres, y a mí tampoco.

[Lola]

First of all, Enrique, thank you for the corrected spelling. I was going back 40 years to high school, for pete's sake.

I love the meaning of Lola - my internet name. How interesting that I would choose that name.

Thanks so much for the information on dizziness. Yes, I've had those same episodes of needing to hang on for fear of going through the floor. I've only had a couple of episodes that lasted all day. Those were absolutely horrible, but have fortunately not been driving or standing when they occurred. Both of the bad episodes happened while I was sleeping and tried to roll over.

So now I wonder if these are signs of a flare, or just plain residual damage.

Cheers, Adios, Ciao, Aloha, and until next time, Lola

[pberggren1]

A Spanish course sounds great, Enrique.

[elephant]

I wonder if it is a flare too, I have passed out twice "unknown. "

[pberggren1]

I have had some slight dizzy spells the last few months, but nothing severe.

[jola57]

Hi Enrique and welcome.

[Deanne Hull]

HI Enrique I am new as well, glad to hear you are well and positive.