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mickoko
05-02-2009, 03:01 AM
Hello Everyone,
Hi, my name is Mick and I have had WG since 1998.
What a few years of fun it has been since then, up,down,up and down.I was first diagnoised with WG as I had a pain come in my side and was then hospitalized for a few weeks as they struddled to find out what was wrong with me. Eventually, a (great) Doctor came to see me and knew what it was I had got. I was put on Cycophosphomide and prednisolone for the next year or so and everything seemed to be going ok. How Wrong I was.
Shortly after, I was feeling a bit under the weather one weekend and went to my bed until the monday morning, when my wife then phoned the hospital to tell them I was ill. I went to the hospital that day and that was the last I knew for 3 weeks. My lung collasped, my kidney failed and I was in a coma for those 3 weeks until my body made a slow recovery. As I made a recovery, I was told I was very lucky to have pulled through, which has now changed my whole outlook on life.
I am still having the usual problems, nasal ,eyes (both eyes having cataract`s removed and a bad eye infection for the last 2 months), sore throat all the time, pains in my body as a whole, and this eternal cough.
I am now on mycrophenolate, atenalol, alloupinol, pred injections and generally tablets for illnesses as they come along (even gout tablets as I have now developed gout every 3-4 weeks just to hit me a bit more).
At the moment, I am doing ok (ok for mick is the doctors famous saying).
Hospital every month for blood tests, every 2 months to see the specialist and every 3 months to see the kidney specialist, but I know it has to be done to keep it under control. I now look at life in a happy way, and smile as often as I can. Even the doctors call me Mr Happy.
To Everyone out there with WG, keep going and never give up on life.

KtheC
05-02-2009, 08:05 AM
Glad to me you Mick, and welcome

crackers
05-02-2009, 11:03 AM
hello mick and welcome aboard.you've come to a good place.
john.

Derek
05-02-2009, 08:11 PM
Hullo Mick welcome to the site. I have found it very helpful.

Derek

jola57
05-02-2009, 11:47 PM
Hi Mick and welcome to our little community. I am glad you are Mr. Happy in your outlook, it makes a world of difference in everyday life.

mickoko
05-03-2009, 12:57 AM
Thank You to all who have wished me a welcome, its good to see and hear from people with our condition. Usual when i tell people what is wrong with me I just get wegener`s what!
Even 3 weeks ago at the hospital I go to, I went to see the eye specialist and the first thing I got was "have you still got that Wegeners disease now".
I won`t tell you what I said to him, but he didn`t ask me again.
Once again thanks and hello to everybody.

Sangye
05-03-2009, 01:13 AM
Hi Mick,
Glad to have you here. Can't believe your eye doc's question. Did you ask him if he still had his medical degree?

jola57
05-03-2009, 01:21 AM
This had me chuckling

mickoko
05-03-2009, 01:27 AM
No I Didn`t ask him if he had a eye degree, i just asked him plainly if he could read or not.(as he had 3 of my full patient files in front of him and he was looking also at my file on his computer).
This is not the first and only time I have been asked that question also. Some doctors just can`t read!

andrew
05-03-2009, 11:23 AM
Hi there Mr. Happy and welcome! You have a great attitude, keep it up and keep smiling. Often that's all we have the energy for :D

Yes, it's a hard disease to explain and I find many people's eyes tend to glaze over after the first couple of sentences. I think I need an 'elevator pitch' that gets the point across in 20 seconds or less :D

Love your doc's question!

coffeelover
05-04-2009, 01:06 AM
[quote=andrew;2367]Yes, it's a hard disease to explain and I find many people's eyes tend to glaze over after the first couple of sentences. I think I need an 'elevator pitch' that gets the point across in 20 seconds or less :D

Welcome Mick! I love your attitude!

Anderew, I had that glaze over approach just yesterday. An aqquaintance asked me why I have a trach and what is the cause as she had not seen me since my surger (IN OCT OF 2008-7 months ago!) I gave her a very short "blah blah blah tracheal stenosis due to WEGS speech along wih the word auto immune" and realized quickly that she really did not care other than to be relieved that she is not the one with WG. Oh, how frustrating these conversations can be! I tend to be a real Smart A-- and really have to bit my tongue to not say something I may regret!
Lisa

mickoko
05-06-2009, 01:37 AM
Thanks once again for your welcomes and comments.
I sometimes feel that the best way to describe my illness to someone, is to let my wife explain it to them first off. She has this knack of telling it a lot easier than I do as she gets straight to the point, and sometimes, I think she knows more than the doctors herself.She knows when I`m feeling ill, under the weather or just plain down.
The worse people to explain to, are the student doctors, they want to know everything, when you got it, how you got it and everything thats happened to you ever since then.( I suppose they have to learn at one time or another but its just so time consuming)
I was once in the hospital on the ward which I usually go to when I`m feeling ill, and I was sick of seeing one doctor after the other, day after day, so in the end I had run out of steam. The next one who came, (he was only young) came over and asked my name. I gave him a totally different name, he looked at me and the name above my bed, smiled, and just walked away. Never saw him again.
Sorry if theres any doctors reading this but thats how I am.:p

crackers
05-06-2009, 02:59 AM
mick i can totally relate to your student doctors experience.the first time i was admitted into hospital i was visited every morning by a group of students.problem was it was a different bunch every time.after a few days it became rather tiresome plus i hadn't been put on any meds at that stage so was not well at all.as you say they have to learn but it can be a pain.
john

Cindy M
05-06-2009, 03:51 PM
Welcome to the site, you have a good attitude, we all need the same attitude to get through some tough days and appreciate the easier days.

Sangye
05-07-2009, 12:29 AM
I just got out of JHU hospital--went through 7 days of the student doc thing. I figured out the hierarchy (attending physician in charge, then fellows, then residents, then med students...) just by observing them.

The youngest students are more like the eldest docs-- most personal interaction, laugh at your jokes, make eye contact. One med student made it a point to make eye contact each day and to thank me as they left. He's in it for the right reasons.

The ones in the middle--residents, fellows-- were the least likely to treat me like a person. They were really caught up in the "look at me in my nice white coat which I have TOTALLY earned" thing. They were the most likely to treat me like an object for their learning experience, to want to prove to the others that they knew what was going on, and even make fun of my opinions about what I felt was going on in my body.

The attending would come back later each day and we'd have a nice talk. It was like he was mopping up the debris the middle students left behind. He was a great doc. I hope the others learned from his kindness and his willingness to listen and learn from his patients.

Doug
05-09-2009, 04:22 AM
At the moment, I am doing ok (ok for mick is the doctors famous saying).

Classic "new normal", isn't it! Welcome to the forum, Mick! Your positive attitude will be a great contribution to what we older Weggies try to encourage in the newer Weggies: be positive and have realistic attitudes toward the future as WG is for life. As Richard coined it, BFF! (:rolleyes:)