Suffering in Silence

[mishb]

Wow is right.

I am so glad you are feeling a little better now and hopefully things improve even more in the weeks and months to come.

I can't wait to hear more as you plow on through this rollercoaster of a ride.

Take care and always .............

[watersedge]

Hi Karen, I've read your story and you have been through so much, it is just terrible how much suffering people have to go through and how much damage is being done to your body before a diagnosis is made. You often wonder if maybe it had been caught sooner that your kidneys could have been spared, I am sure that has probably crossed your mind a thousand times. I sympathise with you over having to go through dialysis, I watched my father having to go through it and the first time I saw him with the line in his neck was devastating and very scary. A neighbour of ours has wegeners also, he is in his mid thirties and also had to have a kidney transplant, he had it done some years back and is doing well. I actually cried when I read the part about your grandmother, it was so sad, I am very sorry for your loss.
I was just wondering about the piece you wrote about 1 in 5 not responding to the chemo drug and you being one of them. Did they just keep you on it or try something else to bring the wegeners under control somewhat, my dad didn't respond to the cyclophosphamide either.
I wish you all the best for the future, I hope everything goes well getting a donor and transplant, I am sure it would be such a huge relief not to have to endure constant trips to and fro for dialysis, I know it is very tiring and soul destroying.

[KarenH]

Thanks everyone for your kind words...Dialysis is very rough, no doubt there, and yes this line in my neck is another story...I'm hoping to get this taken out in two months and get a fistula put into my arm while I wait for my transplant which should happen in October or November...I have to fly to Halfax for this surgery as they dont do them in Newfoundland but is confident all will go well....I have six family members willing to donate their kidney so on March 26 we have to all go for tissue sampling, results should follow in about a month and then we can start the process of working the donor as they call it, most of the testing for me is already done, which is good so that gives us a head start..the only thing is that in order to get a kidney, you most be wegener free for a year and in the last few days havent been feeling so well so hoping its just a bug i picked up and nothing else....they ran an anca test back in january and it was 70, february it was 30 and we are waiting the results of march's test...hoping all is well, i will get the news on dialysis on friday.....

I refer to cyclophosphamide as the devil, well all the drugs have their own side affects which are horrible...I am on Imuran now but is suffering that out as well.....they have slowly tapered me off the Predisone.....I was on 60 mg and is now down to 7.5mg as that is doing major damage to my teeth but from the doctors point of view, got to stay on it now as they are afraid wegeners could pop up again and they dont want to take any risks, nor do i so i must suffer it out...I get raging pains up and down my back but got no choice but to stay on it...

Thanks again for the well wishes and I'm wishing everyone the same, its very comforting to know people who are going through what i'm going through....

[vdub]

A well written story! I remember going through many of the same tests, trials, and tribulations in the 2 years leading up to my dx. But, now that you have been dx'ed, it gets a lot better. In 6 weeks I "celebrate" my 2 yr anniversary of when the world changed. Only in the past couple months have I thought my life wasn't totally over and things wouldn't ever be normal again. Things do get better. Good luck on your road to remission....

[Col 23]

Hi I havent been on the forum for so long so Hi to everyone. Still not into remission, doing chemo infusions and pred and hoping it will sort it self out.
cheers Col 23

[Sangye]

Welcome to the group, Karen. I'm sorry that it took so long for you to be diagnosed, and that it caused permanent kidney damage. I have to say shame on the hospital doctors who knew you had kidney and lung problems but scratched their heads. The classic Wegs triad is kidney-lungs-sinus. Anyone in medical school can recite this!

I hope that you have excellent doctors at this point. It's a necessity with Wegs. Glad you're off ctx!

[RCOSSIO]

Karen...too many stories similar to yours. I am glad you found this site, its has been a godsend for me since I joined back in June 2008. Check frequently and research your answers here, there is plenty of valuable information to make proper decisions with your Weg's doctor.

[KarenH]

Thanks for all your support....I've been un well the last few days but it was only the stomach bug so they put me on a heavy antibiotic and all seems well again now.....got my ANCA results and they are now down to 23.7, thanking god for answering some prayers as they won't attempt the transplant if I'm not Wegener free for a year.....

I've been asked by my local newspaper to do a story, so I will try and do us proud and get some awareness out there.....

[Hal]

It is a tough slog. Most of us have been through it to various degrees and can relate. We have excellent doctors here. You are finally diagnosed and your ANCA numbers are trending down, so the hardest thing now is to stay positive about the future. I have always said this is a "mind over matter" disease, and if you give up it will wear you down. You, try and stay positive!

[elephant]

Karen, your story reminds me of mine when I was 15 year old. I'm sorry you have been through some really tough times. You will get a kidney, keep up the great positive attitude.