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sue12
06-10-2008, 07:27 PM
Hi,

I am pleased :) that I have found this site and reading how people are coping with this disease. Because when this disease was first diagnosed we felt so alone and could only get the information from the doctor's and a majority of them dont know enough. My husband was diagnosed in February this year after a long period of time going back and forth to the doctor's (the symptons were over a period of two years jaw ache, general feeling of not being well, tiredness, sore throat, deafness, then severe severe headaches, nose bleeds, In January 2008 - his legs started to swell, elbows and ankles developed sores which eventually lead him being admitted into hospital where he collapsed with pain because he could not walk). Two weeks of medical tests we were told that this disease could kill him which was a big shock as we had never heard of wegener's. Then the hospital checked his kidneys and damage had been done which has now stabilised.
Since February my husband Pete has had breathing problems. Originally he lost his voice. We are at present awaiting to see a consultant regarding the breathing. He gets so breathless but it is not all the time- around about 95% of the time? If someone could reply to me if they have had this problem and what we can do. It would be so helpful. Pete has had x-rays and cat scans which show his lungs are clear? Could it be damage done to the voice box and windpipe? We dont know. Anyone out there been through this please contact me with your experiences and any advice:confused:. Greatly appreciated.
Note: Pete had all the normal (from what I have read) medication which is now changing as all the blood counts are coming back to normal.


Cheers Sue
from Hertfordshire
in the UK

andrew
06-11-2008, 05:29 AM
Hi Sue and welcome!

Yes, it's unfortunate that many doctors don't know enough about this disease. Have you seen the list of Consultants at the Vasculitis Foundation's website? These consultants are available to other doctors to contact if required. Most of them are in the USA but there's one in Cambridge and a couple in Europe. See here: Vasculitis Foundation Medical Consultants (http://www.vasculitisfoundation.org/node/44)

It's always a shock being diagnosed although in many ways, it's a relief as well because finally someone has found out what's wrong.

Glad that his kidneys have stabalised, that's good. Really good. Not many things suck as much as Kidney problems :D

Now, as far as his breathlessness is concerned, perhaps it could be Tracheal Stenosis???? There are at least a couple of people here on this site that have it or have had it previously. I'll leave it to them to discuss.

Great that his bloods are getting back to normal too. What medication is he changing to?

Again, welcome and drop by any time!

debbie
06-11-2008, 11:37 AM
Hi Sue: I am new to Wegener's aswell, mine was diagnosed due to Tracheal Stenosis, like all WG patients I went through many tests as my lungs were clear, until finally my upper airway was 80% closed, I was hospitalized at that point, and was able to get the inflamation down with high doses of prednizone through IV, and then was diagnosed. There is a procedure that can be done to widen your upper airway, but my airway is to small, but so far the steriods have kept it somewhat under control as my next option would be a tracheomety. I am hoping to be in remission before that happens. I am one of the lucky ones though as my kidneys are still fine. Right now I am on 40mg of prednizone/daily. I do have to go to the ENT specialist montly for a scope of the upper airway to ensure the path stays clear and open.

sue12
06-18-2008, 10:06 PM
Hello Debbie, Thank you for the reply. Pete has had tests which show his lungs are clear but still cannot get his breath. Here in the UK - he may have to wait a while to see a chest NHS consultant so I am organising private treatment at the moment to get him seen quicker as he says he can feel something in his lower throat which he cant clear and does get breathless... and I agree it sounds just like what you have /had. All his blood results are showing - going back to norm. Though he doesnt feel great which may be due to the new tablets he on. I will have to bring the list in from home to write down his story. He was taking prednizone 60mg a day to begin with now down to 20mg. Also, just recently been put on blood pressure tablets as blood pressure high. Which may or may not be steroid induced. Is seen every two weeks at the hospital - tomorrow the next one. Thankyou again.