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View Full Version : Husband Newly Diagnosed, Quick Downward Spiral



kk226
10-30-2008, 12:26 PM
Hi, my husband and I are from Frisco (suburb of Dallas, TX). My husband is 41 years old, we have been married 2 years as of 10/21. He had what we thought was allergies, then sinus infections ongoing since late January of this year. Went to GP's and after SEVERAL failed treatments of antibiotics and no relief, finally went to see ENT (not at request of GP, they ordered CT and said everything looked "fine"). My friend insisted he see her ENT. HE reviewed the CT from the GP and said there was no way this looked "fine". He scheduled sinus surgery.. this is now September. Go in for sinus surgery thinking he is going to wake up feeling good as new. I get called into the "consultation room" and am told that the ENT aborted the surgery as the massive bleeding in the membranes was indicative of W.G. He took tissue samples to biopsy, later confirming WG. He tried to explain to me what this was and set up an appt w/ a Rheumatologist for 10/8..soonest we could get in. During the time between the "sinus surgery" and the specialist appt, my husband took a HUGE turn for the worse. He couldn't get out of bed, mass nosebleeds (these actually had been occuring for 2 months), Our new GP diagnosed him as having pneumonia, of course, he didn't but at least she had enough knowledge to prescribe him a steroid to buy a few days until we could meet w/ the specialist. To make a long story short, between the time of 10/8 (1st appt w/ specialist) to 10/16 my husband's health detoriated at such dramatic speed. Even though he was started immediately on Cytoxin and 500mg 1 day of Pred., 1000mg and 1000mg the followig 2 days , hiscreatinine levels from 10/11-10/16 went from 1.9 to 5.2, was sent to ER and has been in hospital ever since. Friday 10/17 he was given 1500 mg of IV cytoxin and 1000 mg of IV steriod for 2 days... Sunday 10/19 emergency catheter was inserted and plasma exchange began. His creatinine levels had gone over 8. They kept rising, by Tuesday 10/21 (our 2nd anniversary) he was in ICU and had started Dialysis in addition to plasma exchange and blood transufusions. Creatinine had risen above 9. They kept ( and keep ) testing him for other diseases that could be attributing to such a rapid failure of his kidnesy (including kidney biopsy) but everything comes back pointing to WG. They team of 5 specialists that he has are all "baffled" at the rapid progression from his sinus' to his lungs to his kidneys as that is not "typical" of WG. We are talking within a week his kidneys went from ok to acute kidney failure. We ARE fortunate that our team of dr.'s are well versed in WG so they have thrown all caution to the wind in order to get him better! He is on disability from work and still in the hospital but hopefully, will be out this weekend! This is a devastating and horrible disease that is such a mystery. I am so thrilled to have found this forum!! Sorry to unload so much on my introduction :)

andrew
10-31-2008, 07:08 AM
Hi there and welcome! It's ok to unload in your intro, that's what it's for :)

Glad to see that your husband might be coming home this weekend. It's a real boost coming home after a long hospital stay - for both husband and wife.

You're so lucky to have Doctors that know what they're doing although I'm not sure why they keep testing him for other diseases. WG is weird. It can be slow over years or fast over months or weeks (mine was over a few months). Still, as long as they are treating him with the right medication (and if he's coming home this weekend then they must be!) then all is good. What's the prognosis on his kidneys?

kk226
10-31-2008, 10:55 AM
Thank you for responding! Unfortunately, we received the news today that my husband will be in the hospital for a while more. He is very frusterated and upset but it is the best place for him to be. We do not have a prognosis on his kidneys as of yet. His creatinine level is still in the 4-5 range w/ the dialysis. He is doing better just not at the point where the doctors are confident he can be w/o their constant monitoring.

Please tell me more about your experience with WG....Any words of wisdom?

Thanks again! Fantastic forum you have created and much needed!!

andrew
11-01-2008, 05:40 AM
I had similar feelings of frustration too. I was hoping to be out of hospital by the time my wife had her birthday but ended up staying a further two months :( Not saying that'll be your husband's case but I can relate.

My experience with WG started late in 2002 with aches in the joints, bleeding nose, sinus infections and blood in the urine. Even though I was obviously sick, I still had more important things to do so despite being told to book myself for a kidney ultrasound (my doc thought it was kidney stones), I kept on for over a month going to work and living my normal life (albeit a little slower!).

My the end of Feb 2003, I was getting really bad. By that time I'd had the ultrasound and 'nothing' was wrong. I could barely see because my sinuses were so bad and my wee-wee was getting darker by the day. I got retrenched from my job which was a blessing but by that stage I was too sick to care. I was in hospital by March 8 because I could not longer breath on my own. How I managed to walk into the ER I have no idea.

Anyhoo, that's the last thing I remember until I woke up two weeks later. I was on a ventilator in ICU which was on at 100% of everything so there was only two ways I could go. I was on that $%^#&*@ ventilator for five weeks all up. Ov course, I couldn't talk or eat while it was in so when they took it out I didn't shut up for 24 hours straight :D I think they probably slipped me a sleeping pill :D

When I finally got out of ICU and got rid of that catheter (if I never have one of those again it'll be too soon), it was a case of wheaning me off the oxygen. That was more a mental battle than a physical one because I had become quite attached to being able to breathe! In the end I think one of the nurses switched off my oxygen without me knowing because I found the tap in the off position some time later and realised I was doing it all on my own!

During my time in hospital I had dialysis which is a pain in the bum but a necessary evil. I can sympathise with those people that have to go through it all the time. My kidneys and lungs eventually came back to almost normal so I don't have any other treatment now than the daily tablet regime.

I was really lucky with the hospital and the doctors/nurses that I had. They saved my life. I probably would have been dead if I was somewhere else.

Have a read of this thread if you haven't already. It might help your husband: http://wegeners-granulomatosis.com/forum/hospitals-clinics-doctors-nurses/13-andrews-tips-your-hospital-stay.html. I think giving the hospital staff as much grief (in a good way) as possible is good for shortening your stay :D

kk226
11-01-2008, 10:38 AM
Hi there! Thank you for responding! I appreciate hearing your story about your battle with WG. I can only commend you on your positive outlook (and humor) and view of things! Good for YOU! The world needs more people like you! I appreciate your advice for coping w/ the hospital and am passing those along to my husband. As you know, this is scary and it is nice to know you aren't alone and that you aren't the only one that is or has experienced these feelings. I am eager to introduce my husband to this group!!!

andrew
11-02-2008, 07:03 AM
The world needs more people like you!

Well, thank you:cool:


I appreciate your advice for coping w/ the hospital and am passing those along to my husband.

Excellent :) Hopefully by following my advice he can get out of there quicker :p


I am eager to introduce my husband to this group!!!

We'd love to have him as a member!

Remember though, that he has to accept that he's going to need to take things slowly. It'll be three steps forward and two steps back for a while. His body has gone through the meat grinder so it's going to take some time to get going again.