Param - new member

[Param]

Hi

My dad who is 67 yrs old has been diagnosed with wegeners in early July this year after 1 month of wrong diagnosis and literally on the verge of heart failure.

Well he had renal failure and contrary to what his nephroligist thought (or rather was sure) his kidneys have completely recovered so no dialysis since August!!!!!!!!!

His tests are improving but he is so weak................i mean he has lost 10 kgs of weight and sometimes he falls down and is not even able to sit up let alone stand :-(

He has been given 2 infusions of RTX (cyclophosmides brought his condition stable but his body could not tolerate it more than 15 days).

He started on 100mg of Pred which is now tapered to 20 mg along with MXT.

Just wanted to know if this weakness is pretty what everybody exprnces and will he be normal again????Also he is in DENIAL mode doesnot even want to talk about his disease.You know he is wishing it away :-)

He is Dubai right now and since i cannot be with him for long (I have a job and need to pick up the bill ....he has no insurance :-( ).. I wanted to have a reality check as we all are hopeful that another month he should be back to completely normal life

Thanks a lot For this FORUM.....................and Andrew for helping me register............

PARAM

[WeggieParent]

Hello Param!

I can understand the denial. Even after my daughter's diagnosis, it took me months to accept the fact that she didn't have H1N1 flu or something else. I just knew the doctors had made a mistake. An Auto Immune disease sounded crazy! And who ever heard of Wegeners Granulomatosis?? It may take your dad awhile to accept the reality of an auto immune disease, but I hope he will so he can get better. It would be nice if we could all 'wish it away'!!

I wouldn't expect his life to be completely normal after a month. Renal failure and near heart failure are serious things. Everyone reacts differently to the medicines needed to treat WG so his weakness may normal for him for awhile. I'm always looking for success stories and there are many on this forum. So, I hope you will find encouragement here.

There are some very smart knowledgable people on this forum with years of experience. I'm sure you'll be able to get lots of advice and help.

Best wishes to you and your dad.

[Sangye]

Hi Param, welcome to the group. Thank you for taking care of your father's needs and for joining this group on his behalf. The weakness he is experiencing is quite common. There's no telling what his condition will be like in the coming days. Wegs is highly unpredictable. Things can get worse on a dime BUT they can also get much better on a dime. The best thing is to take things day by day and not look too far down the road with either hopes or fears.

Denial is common and continues in sneaky ways for many of us. Give him a little space to come to terms with it. Getting a diagnosis like Wegs and getting knocked on your butt like that is not something anyone is prepared to handle. It's extremely difficult.

Please keep us updated and continue to post with your questions, comments, concerns, whatever you need.

[Al]

Param--

Denial comes in many forms, and be an impediment to healing. We all have demons in our anxiety closets, and those of Wegener's sufferers are backed up by action demons of disease. Some people choose to keep their demons in closed boxes underneath the shoes and other assorted closet gunk. My own style is more to get to know my demons on a first name basis--take them out for a drink, how's the wife and family sort of thing. Sure, they still torture me, but I figure that if they can vent to me directly, maybe they won't be so cruelly felonious. But this way is not everyone's. (In your father's case, the lack of insurance could, in itself, be a strong and practical reason for denial. Therapy is expensive!) Sometimes, as a family member, it is the best therapy to a) take care of yourself first, then b) attend to the immediate physical and psychological needs of your loved one the best you can without delving into the back story or being otherwise psychoanalytical. In your father's case, I think the weight loss is a major concern (I lost some about 8kG, but most prednisone users gain weight), along with the weakness. Problem is, mostly you're here, he's there. In any case, thanks for being the Good Kid. It gives me hope for becoming old and gray!

Al