My husband's story

[Sheila Schembri]

My husband was diagnosed in 2007 after a long battle. He started with a cough that would not go away, ended up in the Urgent Care Clinic on New Years Eve day 2006 as his ribs were excrutiating. He had cracked 3-4 ribs from coughing so much and something showed up on his x-rays of his lungs. After many tests, procedures and finally a left lobectomy they came up with the diagnosis. We were relieved that the diagnosis was not lung cancer (which everyone was leaning towards) but it has been a long road. He does not have kidney involvement and from reading some of your stories it sounds like he is doing okay but we still worry. Hardest part has been his personality has changed. Has gone from being a very happy go lucky positive person to being somewhat paranoid and a real worrier. Hard with two teenagers in the house but we are all just so happy he is still here.

[Doug]

Sheila-

Each weggie finds his or her own path to acceptance. I think your husband would find Jack's responses particularly helpful because he's had WG for over a quarter century, with many ups and down, variations on treatments, bad news to terrible news to worse than terrible news, yet his attitude is one each of us can respect and admire: he doesn't have good days all the time, certainly, but he is generally pretty darn upbeat. Maybe one should say he is positive and realistic.

It sounds like your husband may be over concerned about things like hand washing, perhaps, or the future (which is uncertain even for people in perfect health!), or medical costs, or job security, any number of things, any one of which could weigh Pollyanna to the ground. If you can get him to read the forum, perhaps he can gain a little perspective, or, at least, formulate questions for us or his doctors. Being one's own patient advocate is one way to break through the frustration and worry of being a weggie. Learning all you can about the disease, it's treatment, its prognosis can all contribute to a better sense of being in control. As a guy, that being in control is one thing that concerned me (not being in control, rather!), and that may be at the root of his seeming personality change into a worrier. You know your husband best.

Try to help him accept WG not as some impossible burden, but something he can live with. I don't know what sorts of medications he's on, how his illness has impacted his job or career, but those factors can cause major concern. Insurance is another. There's no end of things to worry about!

We will do what we can, as weggies and family members of weggies. (I'm a weggie who had kidney involvement, am in remission, and am doing pretty well: it is possible to return to a reasonably "normal" life.)

Not knowing what you have seen or found so far, I will recommend that you also check out this source of patient-centered information:

Front Page | Vasculitis Foundation

Their frequently asked questions section is particularly helpful to newly-diagnosed weggies, but it has value, too, for people dealing with it for the long term.

Finally, reading through some of the new member introductions, you will find that your husband's (and, doubtlessly your!) concerns are amazingly similar to those of people who came before you on this site. You are not alone!

[Sheila Schembri]

You have nailed him in a nutshell. Had him on the site last night reading a few stories and frankly they scared him to death. Read one story about someone who had brain involvement -- didn't even know that was possible. He told me to keep on the site and read him only the good stories. I am fine with that! It is just so nice to know there are others out there who understand what he is going through. He really does feel alone in this.

[Sangye]

Hi Sheila, welcome to the group!

I mentioned this on another post recently : My Wegs doc told me that if you've had Wegs for some time without kidney involvement, it's highly unlikely that you'll ever develop it. My Wegs symptoms began in 2005. He said he'd be absolutely shocked if I ever developed kidney problems. This is fairly new info. They used to think kidney involvement was inevitable. So maybe hubby can take "Must worry about kidneys" off his to-do list!

I've had some horrific complications (eg increased brain pressure). So your hubby might read about that and worry. But even my JH doc has never seen another Weggie with it, and he treats Weggies all day every day.

[Barbara1966]

Sheila,
If the cough ever go away? I was diagnosed with WG in August this year and still cough my brain out, my whole upper body hurt so much I'm afraid to sneeze and all the cough medication don't helping at all. Please advice.

[Sangye]

Barbara, cough medicine won't help if it's Wegs-related. If you're still coughing badly after several months of treatment, it sounds like the treatment needs to be adjusted. What does your doc say?

[Jack]

I developed a cough about seven years ago which was eventually diagnosed (lung biopsy) as Bronchiectasis. It is not a very treatable disease and although I use a couple of inhalers I cough constantly.

There is no established link between this disease and Wegener's (although I suspect there might be), but if you have an unexplained cough, you should get it checked out.

[Doug]

You have nailed him in a nutshell. Had him on the site last night reading a few stories and frankly they scared him to death. Read one story about someone who had brain involvement -- didn't even know that was possible. He told me to keep on the site and read him only the good stories. I am fine with that! It is just so nice to know there are others out there who understand what he is going through. He really does feel alone in this.

Fortunately, most of the weggie experiences are reasonably suitable to tell someone who is dealing with terror. I think that's a fair statement: at one extreme, people die from it, but, these days, treatment is straightforward enough most times that a new weggie has a about a 92% chance of surviving in some form or other!

[Barbara1966]

I just have an open lung biopsy done last week and all the results just WG. The doctors are saying that the cough should go away in time, currently I'm on 40 mg prednisone per day, 1250 mg cytoxon a month and I have an inhaler "Proventil" that is helping with the breathing plus some other antibiotics.

[Doug]

Barbara-

I'm encouraged to see more and more of you newer (or quieter!) members starting to speak up with your own experiences in support of new members trying to deal with the new realities of WG!