Just a normal day

[BARON]

Hi all it's my wife that has been diagnosed in January this year but we had been going to the hospital all of 2008 with different things one of main problems was nose bleeds which still happen. It takes a long time to sink in and she has been in denial of it for a long time only when i convinced her to fill in living allowance paper work did she realise it was her 'taking 15 table's a day and 29 0n Saturdays is not what a normal person dose because tacking all the tablets mask's the problems. The doctors are not forth coming with help most of time sits there and go's um. The specialist is very good and let's us know every thing he can . From a cares point i must say some days are hard when the steroids kick in.I would chop an arm off for her not to have this some day's the pain in her face just makes you want to cry we have been together from kid's and had all sort's of ups and downs but this is so hard it changes your out look and makes you live Moore for the day.

[crackers]

hi baron.i understand what you're saying about how this disease affects loved ones and family.i had a really bad year in 2007 with pnuemonia,septacemia and emergency cancer surgery.through all of this i could see the worry and anguish on the faces of my wife and sons.at one point i even told her that if she wanted out i would understand as she hadn't signed up for this.thankfully a two word response made me see sense.my point is that although i'll never be the man i was ,with the correct care and meds her condition will improve as mine did.you must demand to see doctors who know what they're dealing with.it can be a long hard road but at some point you will see an improvement in her.be strong for her.my thoughts are with you both.
john.

[Sangye]

Hi Baron, nice to meet you! It must be so difficult to watch someone you love dearly go through Wegs and treatment for it. I admire that you're sticking with it and being such a strong support to your wife.

[BARON]

Thank for your best wishes it's not been a good day for her one eye giving problems an the usewell not been able to breth throw nose apart from that all ok

[Jack]

Saline wash is the best thing for Wegener's noses. It will gently flush out all the crud without causing further irritation and damage.

Do a Google for Neti or Nasal Irrigation.

[Doug]

Baron-

Your wife has certain rights as a patient, and one of them is information specific to her condition and treatment. If you feel her doctors are less than forthright, you may have to find new ones. At any rate, those doctors caring for her should have familiarity with Wegener's granulomatosis because this is a disease that can kill or maim a patient who has some ignorant doctor caring for him or her.

You don't identify where you live (which will help us direct you to specific sources of information, such as WG specialists closest to you). One starting place for reliable information is:

Front Page | Vasculitis Foundation

If you've had time to read through some of the earlier postings on this forum, you will come across certain names who always seem to nag on certain points. Today, I'll be one of those nags: not only do you want your doctor(s) to be specialists, but specialists with deep experience treating WG patients.

The link above will help to a certain extent, but, again, knowing where you live (country, town) oftentimes prompts people on the forum to supply specific names and appraisals of doctors they have personal experience with. People on the forum come from the UK, Australia, New Zealand, Canada, and the USA, so you can see why knowing where you live can help you link up with people best able to give you information on this critical matter. Your spelling of "realise" puts you somewhere "not in the USA". All other countries (except New Zealand) have good representation on the forum so we should be able to help in this regard.

The information on drugs and dosages and other treatments is good. The treatment of WG patients is evolving towards more conservative use of chemo-therapy drugs, and new drugs that are less difficult on the patient. By knowing what your wife is taking, etc., we can see if her treatment reflects our experience or not. While we won't make medical decision on that- we're patients and family of patients!- we can help you formulate questions about that treatment to bring up with your wife's doctors.

Diagnostic methods are complex, as is interpretation of the results. Again, this is why you need doctors who are specialists in rheumatology, pulmonology, renalogy, etc. and have extensive experience with WG patients.

Specialists tend to view the world through the lens of their specialty. This is why you want to encourage doctors treating your wife to have contact with whichever doctor is the primary doctor in her care. Most doctors appreciate it when you can provide them with names and cellphone numbers of other doctors involved in their patients' care, and I find they do talk with each other more often than one might expect. I recommend asking each doctor for her or his business card to simplify the process of identifying doctors by specialties, hospital associations, etc. for other doctors.

I, too, congratulate you on being a great advocate for your wife while she goes through the trials of treatment and healing. It's rough enough dealing with WG without have that support group around you. If family is the main line of the support, you can't hope for more! I also note, as will others, that while we work to support the weggie on this forum, we also are here for you. As noted above- it can't be emphasized too often- the family is deeply involved in this process of acceptance and recovery, too.

The matter of acceptance is a hot topic, both for the weggie and the people around her or him. This is a disease for life, though that doesn't mean that a person can't have a mostly normal life after recovery. This means that there will be a time when your wife looks and acts "normal", but the reality is more likely that she will still have some limitations at the same time- tires easily, or can't stand for extended peiods, for example- that everyone else won't be sensitive to. Long after the weggie comes to terms with the disease, those around her or him still need to grasp the magnitude of what befell their loved one or friend. As an obviously caring husband, you will be able to detect when your wife is over doing things or isn't feeling as chipper as usual, so you'll be a big asset to her down the road.

Not all people go into remission. Most do. But we tend to soft pedal remission on this site because there is no standard definition doctors use to define it. We use the "feel good and no significant, detectable symptoms" definition here. I mean, you do feel out of sorts some days. So do people who don't have WG! When you have a disease where one list (comprehensive but not total) has 108 symptoms for WG, you are bound to have one or two symptoms that are on that list and not be having a flare (an active case of the disease)!

[Sangye]

Everything Doug said : Ditto.

[BARON]

Thanks for all the support we live in UK in east yorkshire the biggest problem for my wife is needing someone to talk to with the same problems this my sound daft but she has friends with cancer or in remission and they have a common ground of experiences but for my wife there is know bench mark as every day is different not knowing if it,s side effects from tablets or something with the condition the forum helps a lot. she say its like a jigsaw puzzle and not knowing were to put the parts.

[Sangye]

That's why Andrew created this forum. Talking to other people with serious illness helps to some extent, but you really need to talk Weggie to Weggie. Can your wife come online and participate in the group? It helps tremendously. We all know the jigsaw puzzle thing.

[Doug]

There are people in Liverpool, south of Birmingham, and the London area on this forum (plus other places that come to mind) who can speak directly to your wife's questions, so I encourage you to encourage her to come on line for a "chat", too. This forum wasn't created until after my greatest need for contact with others with WG, and I understand your wife's sense that there are many pieces of the jigsaw puzzle missing. (That, in fact, is such a good analogy of the problem, that your wife should register it at the copyright office! I plan on using it in future, shamelessly!)

It does make a big difference having that chance to talk/correspond with another weggie, and, when she's feeling more healed, she may want to arrange meetings with other weggies through the private message function on this forum. Some meetings have happened there and here, and, as one of the people who's had the chance to meet anyone else with the disease, I can tell you it is something very special! The distances are not so great there, and it looks like there's a major highway from York to London when I looked on Google Earth. It looks like a 3 1/2 to 4 hour drive to me, maybe less if you drive enthusiastically!

No, it doesn't sound daft that talking with cancer patients fails to fill in the jigsaw puzzle for your wife. WG is an auto-immune disease that doesn't follow the same course as cancer. The only thing crazy here is this miserable disease. If you've had time to read much her, you'll discover each story is different from others: there are similarities, then there are major differences. I had two plasmapheresis treatments during my healing phase in January 2004, yet the Vasculitis Foundation literature (above, link) says 6 to 10 of these treatments, spread over weeks, is typical. In 2004, the University Hospital-Denver experts (rheumatology department head, specifically) felt two treatments were sufficient, that any more than that were unnecessary and returned inadequate benefits to the patient for the stress the procedure placed on him or her! My sinus issues cleared up by the first treatment. By the end of the second one, I was weak, but felt like I was on the road to wellness (and I was!).