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BARON
10-06-2009, 08:22 PM
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
10-07-2009, 01:44 AM
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
10-07-2009, 07:53 AM
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
10-07-2009, 09:19 AM
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
10-07-2009, 05:01 PM
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
10-08-2009, 12:54 AM
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 (http://vasculitisfoundation.org)

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
10-08-2009, 01:20 AM
Everything Doug said : Ditto. :D:D

BARON
10-08-2009, 04:05 AM
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
10-08-2009, 04:28 AM
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
10-08-2009, 06:20 AM
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!).

coffeelover
10-14-2009, 01:44 PM
barron,
I always told my husband that it has to be harderon him to watch me suffer than it ever has been for me. Just be there for her, that will make all the difference in how she feels. You sound like a great guy. best of luck to your wife.
Lisa the coffeelover

jola57
10-14-2009, 02:23 PM
Barron, if your wife is reluctant to go on by herself maybe by being on the forum together will make it easier for her. Even if it is to do the typing for her.;)

BARON
10-14-2009, 07:28 PM
Thank for the support as you say i do the typing but the thoughts
are from her As she says we have never been ones for going to doctors 9 out of10 just get on with it and as you know the problem is now she cannot do that you have to think so much is it the tables or is it something new and its hard for her to except that when i say go tell them and she says oh no it will go off, one good thing is now if she fells tired she will go for a sleep but its hard to change what you have always done she as always been the one like a dynamo I'm a plodder and she finds it hard to slow down i tell her to chill an that seems to wind her up Moore as her tenacity is never say no and says all these things to do and i say sit down and relax but if its not in your nature its hard to change what you have always done

Geoff
10-14-2009, 09:28 PM
Hi Baron,

So many of your points rang true with me. Like your wife, I had no one to compare my illness with, in fact I ended up asking the Doc in Addenbrookes how I rated by comparison with other sufferers! I know it sounds bizarre but I needed to know where I fitted in. I find there is also a tendancy to become introspective and 'listen' too intently to your body. Your comment about 'is it the tablets, or maybe something new?' With my limited knowledge of this disease, I try and keep a diary but try to not get too paranoid about every twinge! I am like you, a plodder, and therefore can only guess at how frustrated your wife must get having been a 'dynamo'. The last thing she wants to be doing is beating herself up. Wishing you all the very best.... got an Aunt and Uncle in Hessle near Hull so I know where you are coming from.

Doug
10-15-2009, 12:47 AM
Baron- I was 55 when WG struck me. I'd never had a really sick day in my adult life, short of a few colds. Till then, I'd been hospitalized briefly after an industrial accident. Before that, I'd been hospitalized when I was born!

I, too, tended to view a trip to the doctor as unnecessary, a waste of medical resources because I always got better on my own before I could get in anyway. Why pay the doctor to tell you the obvious, "You had a cold but are over it!"

Ha! I was like your wife in an other way: I worked like there was no tomorrow, always had more pots on the stove than the average person could handle, I took on any and all tasks I could bring on at work. My garden, well, you get the idea!

I walked around for 10 months with the symptoms I now know were a WG flare. I gradually wore down, but I still pushed, pushed, pushed till, one day, they had to carry me out the front door on a gurney. I was suffering renal collapse, I was swollen up to 290 lbs from 190 lbs. (which was up from 160 lbs., my weight before I quit smoking five years earlier!), my lungs barely functioned because they were full of infiltrates, and still in denial. What an idiot!

Anyway, be patient with your wife. She is going through the medical issues of WG, but she is trying to sort out the emotional ones, too. If it would help her to talk with a mental health specialist there, encourage it, or, because all of us on the forum with WG or WG-affected family members are smarter than those guys when it comes to dealing with WG, again, I join the others in encouraging you to continue to field your wife's questions and comments through you.

Dealing with the reality that she may have months before she really feels up to doing things she used to do effortlessly is a big weggie issue. She needs to know that she will heal, then plateau at some point ("new normal" we call it, in recognition that it most likely is a temporary state, but a relatively calm one, so far as the disease process is concerned). Because the disease is very variable, and there are many people of the forum whose personal experience with the disease runs the gamut, she is bound to find at least one of us at each stage of her healing who can encourage her, instruct her, hold her hand. (p.s. This applies very much to you, too! Family members have a process they go through, learning to deal with a parent or spouse, etc., who may look very good indeed, yet actually is in healing, is not able to do things as easily or for as long as they used to. The disease is for life, which just means you have another factor to deal with, one most people don't.)

I ramble as usual. I encourage you and your wife, still, to make contact with other weggies. Even if your wife could talk on the phone with one, that might encourage her. :)

Sangye
10-15-2009, 01:12 AM
I was super strong and healthy, too. Seeing a therapist weekly since diagnosis in 2006 has helped me more than I can say. I would have had little chance of coping with such a change without it.

jola57
10-16-2009, 04:45 PM
We each deal with the inability to continue with our "dynamo" lives in our own ways and in our own time. Some reconcile quickly, slow down and happily continue in the new normal, others take time to come to grips with this crippling disease, and some may never accept the disability and suffer mentally. For each it is their way of life and their way of coping. I do hope your wife quickly realizes that while she may not be able to do everything as quickly as before, she can still do a lot of the things she did before.

BARON
10-19-2009, 05:30 AM
Not a good day Wednesday so specialist meds not doing to well looking at changing them or might be cemo going back Monday problems with face and leg again had to up antibiotics again nose not good ever think Ive got my Owen whistle could do football matches ha ha will keep you posted

Doug
10-19-2009, 01:29 PM
New therapy for vasculitis will help patients avoid infertility and cancer (http://www.eurekalert.org/pub_releases/2009-10/hfss-ntf101409.php)

Baron- Please read this release Sangye posted on another thread just recently. Perhaps it offers you and your wife some hope.:)

BARON
10-20-2009, 06:05 AM
Went to see specialist again to day and after test found it has spread to kidneys changed drugs Not a good day back at stage one again seeing doctor on Thursday blood test every week again and trips to hospital at lest he's letting me say at home for now booked me with a rheumatoid arthritis specialist also just in case he said i needed a bed in hospital the strangest thing is bloods come back ok but was found by water works tests he said i don't follow the norm but as they say what is normal with this

Jack
10-20-2009, 06:53 AM
Sorry to hear it is all going wrong for you at the moment Baron. As you say, there is no Normal for the progress of Wegener's or even the blood test results expected. Just consider yourself lucky at the moment that the kidney problem has been spotted. That should give time for treatment and recovery.
I know it can be a bit of a roller coaster, but things WILL improve given time.

Doug
10-20-2009, 07:00 AM
Just as Jack says! Believe it!:)