Hospital again

[Lightwarrior]

I have to disagree with that if Wegener himself had thought that. People with wegs would still be dieing to an unknown diseases you could say way take first add course because you my never see some one dieing or in an acedent but we do all knolege gives the chance to save one person live must be for the good.

Baron,

Another saying very close to Sangye's "Don't cover the world with leather" that may help to put things in perspective is "think globally but act locally". As people livng with Wegeners we think globally by participating in this forum, belonging to and supporting groups doing research such as the Vasculitis Foundation, educating our health care providers, friends and family, attending or supportiing conferences like the one in California coming up, participating in research projects when we have the chance.

Making sure your feet are covered is acting locally, it is what we can do right now to care for ourselves, things like keeping track of our symptons, exchanging information and ideas in this forum, having a family member or friend who knows about your specific symptons so if you can't speak for youself someone else can. Seeing a specialist on a regular basis, watching our diet, decreasing our stress levels, educating ourselves and family about Wegeners, learning to understand what labs and other tests mean etc.

One of the challenges of Wegeners for me is that it is hard to quantify, in my job I have goals i.e. reduce Ventilator Associated Pneumonia by 10% over the next year, reduce Sepsis mortality rate by 20% etc. Goals that I can measure and work towards, I know that if the nurses and doctors I work with understand the bundles (order sets) and follow them that there will be significant reductions, in other words if you do A then you can expect B to happen. With Wegeners you can do A and you may get B or you may get C or D, there is no way to say if I do this then I can expect this. It is random and chaotic and this is the only sure thing. Therefore, we have to keep our own feet covered with leather, but that doesn't mean that we can't work on the bigger picture by particpatng globally.

[Sangye]

Very well put, Lightwarrior!

[jola57]

That is so true Lightwarrior

[BARON]

I agree with you all i am not always the best at getting across my point in writing as i am dyslexic I don't expect all doctor to know of this rear disease that is way i would like to see some form of bracelet with today's technology and computers it could mean not having to sit in an a/e for hour then when you get to explain to them all that is going on they move you to a separate area as they say its not good for you to to be with all these people you my pick something up. As i was reading the other night in the 1700s life expectancy was 35 and that was the world not to rear My point still is from something simple as a bracelet that lets people know i don't know all the medical terms i find some days its just hard to look at someone going throw so much pain and all you want to do is take it away and if i can make that path easier i will As you say i look after my own and will do any thing that makes her path easier I know its not the systems fault but systems have to change with the times Sorry if this up sets anyone but i love her so much.

[Sangye]

Baron, they do have such technology. Ask your pharmacist-- I don't remember what it's called.

I made an emergency card for my wallet that has all the info a hospital would need in case I'm not able to communicate it. I think that could help Dee. Here's what I put on it:
1) Name, address, phone
2) List of current conditions (and past conditions if I'm still taking drugs for them--eg blood clots)
3) Risk factors-- drugs I'm allergic to, being immune-compromised, on anti-coagulant therapy
4) Names, phone, location of my main docs and what their specialty is
5) Names, phone of my personal contacts

When I list Wegs in my current conditions, I put this in parenthesis:
Wegner's Granulomatosis (autoimmune vasculitis, causes pulmonary hemorrhage & kidney damage)

I don't have kidney involvement, but I listed it because they should be aware that I could. I tend towards pulmonary hemorrhage.

ER people and paramedics have always been happy that I hand this to them. Even when I can communicate well, it saves me having to repeat everything and spell it for them. They can ask further questions based on that. SO much easier for me, too.

[DEE]

hi everyone IM HOME
dont want to go through that very often too scary
just sat waiting for gp and wg consult to ring back to bring them up to date with what is happening
saw lung scan yesterday have several clots in upper and lower part of right lung trying to get round inr testing plus usually bloods as my veins think otherwise about parting
must tell u everyday had a visit from a different medical student they are going to do some work on wegners as me been in the hospital gave them ideal time to interview someone with wg
will catch up later as about to catch up with abit off lost sleep
thanks for all your kind messages DEE x

[elephant]

Welcome back Dee. So glad your home, hoping you have a quick recovery!

[Sangye]

Welcome home, Dee! I'm so glad they found the clots in time. When you can, catch up on the thread called "Blood Clots and Wegener's." Lots of info there to help you.

[Col 23]

Welcome home Dee. Wishing you a speedy recovery. Get lots of rest and look after you. Say no alot.
Col 23

[Natalie]

I know this is a old post and glad Dee your home , But there are some interesting points raised in this thread about educating yourself and hospital staff , I NEED to learn more about this Disease and meds .. and Taking the time now to reserch more and read more . Even though I have Had It for 13 odd years I defently should know more than what I do . Im only just skimming the surface of what could possably happen to me .. If I was more educated earlyer I may of prevented losing my sight . I should of yelled louder . I will yell louder from here on in.. for its my future and my well being these doctors are playing with . If that makes sence :P
Sangye the medical card in the wallet is a great idea , I did have one but threw it yrs ago I will do up another one , it will save time and explaining over and over.