How does your Wegener's Affect your Family?

[Daggar]

For adults - I guess it depends on "personalities".... whether you are the hands-on type or more reserved makes a big difference on the type of care you get. I'm like you and I'd ask a lot of questions and want to be in control of it so there's no confusion....

In the case of children -- we're lucky there are "Children's Hospitals" and Pediatricians who are very good at working around the complications involved but parents should be there.

Holly was very shy and reserved around the doctors at first but she's making progress in that area and I believe she'll become more "independent" as she moves forward.

THere are also cases where the patient is so ill that they definitely need an advocate there with them - I believe there are a few on this site that are in that situation.

[Daggar]

Sidetracked here but... how many have access to their specialists on a daily basis? ie email, phone, etc.

Or is it wait until the next appointment for most?

[pberggren1]

I can phone or e-mail him every day if I want and I know where he lives and works as well. He is usually at the hospital every morning so if it is something urgent I can just go there and track him down, he does not mind that at all.

[Daggar]

this was too good to pass up .... with the spouse & family connection...



couple2.jpg
The wife and I were sitting around the breakfast table one lazy Sunday morning.

I said to her, "If I were to die suddenly, I want you to immediately sell all my stuff."

"Now why would you want me to do something like that?" she asked.

"I figure that you would eventually remarry and I don't want some other asshole
using my stuff.."

She looked at me and said: "What makes you think I'd marry another asshole?"

[ArlaMo]

Sidetracked here but... how many have access to their specialists on a daily basis? ie email, phone, etc.

Or is it wait until the next appointment for most?

Since I flew out to the Cleveland Clinic, I'm thinking I would need to work through my local doc who contacts Dr. Langford. That's how it has been so far. I haven't really had anything urgent come up since I visited CC in January. I have pretty good access to my local docs, but my husband works at the same clinic and they're pretty nice to me

[Jack]

I can pick the phone up at any time during the day and get through to the clinic. They usually tell me to come in immediately if necessary or at the next clinic day if it is non urgent and they will arrange for a doctor or one of the specialist nurses see me. Out of hours, I have been told to present myself at the ER or even on the ward at the hospital I attend.

[drz]

Sidetracked here but... how many have access to their specialists on a daily basis? ie email, phone, etc.

Or is it wait until the next appointment for most?

My emails or phone calls get some response the same day so far. I haven't tried contacting him on a week end but then I would probably be getting care through some local physician who would contact him for consultation. When my regular rheumatologist is unavailable he has staff cover for him who were involved in my hospital care and remember me as a patient and they would provide consultation or answer my questions.

[drz]

Since I flew out to the Cleveland Clinic, I'm thinking I would need to work through my local doc who contacts Dr. Langford. That's how it has been so far. I haven't really had anything urgent come up since I visited CC in January. I have pretty good access to my local docs, but my husband works at the same clinic and they're pretty nice to me

Such professional courtesy really goes a long way in getting the best car possible. It is also easier too since they don't have to translate everything into English for you since your husband speaks doctor.

[Sangye]

I don't have Dr Seo's direct email (I don't think he gives that out) but I do have his receptionist's. I ask her to pass on any questions to Dr Seo. He usually sends a response the same day, sometimes so quickly that I wonder how it got to him so fast! Every so often there's a delay hearing back. The only other way I have to reach him is to call his receptionist but that usually means leaving a message.

The few times I've paged him on the weekend I get a covering doc-- research fellow. Those are usually times when I need to go to the ER anyway. One time he did call back when the research fellow paged him. This whole system works okay for me now. I don't have as many crises and I've learned how/when to go to the ER when I do.

[jola57]

Just as we are different, so are our loved ones responses to our appearance and wegs. Arla, my husband is an anesthesiologist and for him it also is a trial because there is no cure. At the beginning he read all that he could about the disease and now he is just plain resigned to my fate. He has changed just as I had to and we adjusted the household rythm. Where I used to clean, and do other household chores, it is now his duty to dust and vac as my days of wielding the vacuum are over.