Looking For Answers

[Ldoc]

Hi Everyone. I have been reading your stories and they have given me a some great information but would ask if I could trouble you for some more. My husband was taken into hospital with a suspected Cancerous tumour in his nose. His consultant, who happens to be a WG specalist, has confirmed that he believe it to be WG. We have been told that the test results so far indicate WG but we are waiting on the ANCA test, due next week. From what I can gather due to the swift actions of our GP and the fab consultant it looks as though this has been caught really early, as we honestly can't think of any other symptoms that he has had, other than the old cold and the feeling that something has been "hanging on him". Everything that I have read about this condition terrifies me and I was wondering if anyone could tell me if the treatment is really as bad as it sounds, what I can do to help my husband through this and what we can expect going forward. The only concern that my husband seems to have, not that I care as last week we thought there could be a chance that I could lose him altogether, is will he be able to work as he does through treatment. I pray that everyone of you does well as you deal with one of the most frightening things I have heard of in a long time

[drz]

Marcus has a great recovery story here that should reduce your fears. Prognosis is very good if caught very early and case is mild which sounds like your husbands situation.

[Dirty Don]

Like Marcus and your husband, I was caught early on in WG with only varying neuropathy & damaged sinuses (call me Froggy now!), and at 7 months I am in remission. Yea! if I did work (retired), I believe most days I could have done it...but there will be some where he just won't feel like or even be able to get off the couch, so to speak. All depends on the severity & his (and yours) attitude towards this nasty devil of a disease. Best of luck!

[annekat]

For many of us, the treatment is not that bad. The chemo is in much smaller doses than cancer patients get, though there are some dangers to be aware of in taking it every day for a long time. For me and others, the side effects diminished after awhile. Everyone is different. Some cases are more severe and much more debilitating than others. You should be encouraged that your husbands case was caught early. Many of us continue to work with WG, to varying degrees. Some have continued the full-time careers they had before. It's true that every day is different and you may have to make some allowances for bad days. Good luck to your husband and you in dealing with this, and may his case continue to be on the milder side. The forum is always here for any questions or stories you want to share. There are some people here who really know a lot about WG.

[Al]

The ANCA test is not really required for a diagnosis (about 10 percent of WG patients are ANCA negative), though usually a biopsy is. Also, Patients in remission are usually (but not always) ANCA negative. It would be strong confirming evidence, however. The ability to work while undergoing treatment is vitally important for many patients. As I point out often on this forum, feeling useful and productive is an important part of being human. Some of us can and do work regularly; others not so much. And some feel that they have paid their dues, and are happy to be productive on the golf course, and with grandkids. I personally am nearing official retirement, but wish to continue working as much as I can (which isn't quite as much as I need to work to pay the bills, but...blame the economy!). The issue is that most of us have good days and bad days. But it is interesting that, after a few days or weeks of anxiety, most of us are actually preety upbeat about the future, and a few have gone on to do things that are not easy for anyone--like climb Mount Everest.

Al

[KathyB]

Welcome Ldoc to the most interesting and informative forum experience. You can ask anything, offer suggestions, or share your story. But most importantly, you will find people from all walks of life living with WG who care about you and your husband. Happy to hear they caught his WG early. I'm sure his prospects are very good!

[mishb]

Hi Ldoc and welcome to the forum. I too was very scared of this illness prior to this forum but after reading many old and new posts, learned to gain comfort from everyones knowledge.
I also have mainly sinus involvement and I work 9 hrs every weekday with another 2 hrs travel time between home and work and back again.

Everyone experiences different symptoms and different levels of energy and also different reactions to medications and therefore everyone has varying abilities on whether they can work or even whether they can get out of bed on some days. Even those that may just have sinus involvement still experience it in different ways than others do.

Once I drag myself out of bed for the day and hop into a hot shower then I am ready to tackle the world, but on the weekends it's another story. I am hardly ever out of bed before lunchtime, allowing myself a re-charge of batteries to be able to tackle the world again the next week.
My husband is the best support I could ever ask for and he picks up the slack around the home.

I hope that your husbands conditions get under control quickly and am happy that he was diagnosed so soon.

Take care

[Ldoc]

Thank you all for taking the time to reply. This has certainly made me feel better, I apprecaite you all taking the time. Paul has now got a chest infection, fingers crossed this is just coincidence. Back at the hospital on Tuesday, taking things one step at a time

[Dryhill]

Hi Ldoc, welcome to the forum. It makes a nice change to hear of your husband being diagnosed early in his new Weggy life, most of us were not so lucky.

I am not in remission and though I do have off days when I cannot work, most weeks I am able to work a full six day week. Like Michelle, however, I do mostly rest on Sundays so I can get through the coming week. Being a self-employed taxi driver means I can come and go when it suites me and can (and do) disappear for the odd nap in my car. Is your husbands work very physical such as a builder? In which case he may have more of a problem working than me.

The chemo side of things was not too bad, I had cyclophosamide infusions every three weeks and while they did make me incredibly tired for two or three days I had no nasty side effects. Ok so my hair seems to have thinned out, but it was doing that anyway and is now a more distinguished grey rather than its previous exciting mouse colour. For me the worst thing is the steroids, I was already overweight and boy did they add some more bulk!!!!!! Mind you if I get tired of cabbing I can probably now get the job as Michelien Man.

You asked "what I can do to help my husband through this" . What I have found most helpful is support and encouragement, but being allowed to do things for myself when I feel able to. My ex used to come round on the weekend of chemo week, and do the housework that had got on top of me. My neighbour sometimes cuts my lawn and his wife checks that I am ok and still coping. Hopefully your husband will be ok and both of you will able to lead a life very similar to the one you had.

Jim

[Al]

Thank you all for taking the time to reply. This has certainly made me feel better, I apprecaite you all taking the time. Paul has now got a chest infection, fingers crossed this is just coincidence. Back at the hospital on Tuesday, taking things one step at a time

I know it is sort of my mantra, but I keep saying that, for Weggies, there is no such thing as "just an infection". Any infection is a potential trigger for riling up the immune system, and thus setting of the disease again. Not that it always turns our that way, but it is worth watching with a jaundiced eye (so to speak). For what it is worth, both my big flares were preceded directly by a bronchial infection (whether viral or bacterial I do not know). So some patients may be more susceptible to triggers-by-infection than others.

Al