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BARON
04-21-2010, 12:05 AM
Hi just to let you know D is back in hospital with a blood clot and poor breathing they have put her on oxygen she was having a lot of pain in her leg they did ultra sound and that was ok next chest scan poor love she has really gone through the wars this year up to now. She dose make me laugh tho keeps saying have to get better so she can go back to work take care all

Sangye
04-21-2010, 12:15 AM
Oh no-- I'm so sorry to hear this! I'm glad they found the clot before it did more damage. It sounds like it's gone to her lungs, but hoping the blood thinners will keep her safe. Please give her a BIG hug from me.

Also, for everyone else-- remember Weggies are 23% more likely to get clots than non-Weggies. I got uncountable leg and lung clots while on 1,000mg IV solumedrol, so it can happen at any time. They don't always show up on leg ultrasound right away. Mine didn't. If you have calf pain or cramping, or your calves feel unusual in any way, please get to an ER right away for evaluation. Tell them the risk for clots and they'll know which tests to do.

JanW
04-21-2010, 12:24 AM
Poor Dee -- hope she feels better soon!

renidrag
04-21-2010, 12:54 AM
Get well Dee
Sangye, if I you are already on Warafin do we need to be as diligent with that? I mean what else would they do?

elephant
04-21-2010, 01:04 AM
Oh Dee, so sorry. Get well soon.

Sangye
04-21-2010, 01:04 AM
Yes, we do. You can still get clots on warfarin. I actually got new clots while on it-- less than 3 months after I got the first ones. They deemed it a "coumadin failure" and switched me to Lovenox (the hideously painful heparin shots you get while starting coumadin). I had to give myself 2 shots a day for quite awhile, then dropped to 1 per day. I was on Lovenox for almost 2.5 years. The shots are very painful when a nurse gives them, but WAY more painful when you do them yourself. Every single time I had to psyche myself into it. It never got easier.

Thank goodness I moved to Maryland and started at JHU. The chief of hematology put me back on coumadin, and I'll have to stay on it for life. I was miserable about that at first, but now it's nothing. So much better than Lovenox-- which also dissolves bone faster than pred.

I'm going to start a new thread called Blood Clots and Weggies with some other stuff I've learned.

BARON
04-21-2010, 02:37 AM
Thank you all for your support i will pass on to D i am glad this helps other people. Sangye to pass the word of all these things that happen is great the more awareness that can help others people to ring the bell and see there doctor as soon as possible when these things happen will help fast treatment ,I have to say the doctor we have now is great he is very much in tune with all that is going on and this creates confidence for D which is a big support

Sangye
04-21-2010, 02:58 AM
I'm so happy to hear that! :)

Col 23
04-21-2010, 03:19 AM
Wish Dee a speedy recovery.
Col 23

BARON
04-22-2010, 09:37 PM
Just an up date scan back two clots in lungs when she dose things it's not by half at least now the can start treatment to thin down blood

elephant
04-22-2010, 09:50 PM
Thanks for the update. Tell Dee"HI!" Miss her.

Sangye
04-22-2010, 11:46 PM
Thank you for letting us know, Baron. Why didn't they start blood thinners sooner? I thought they already diagnosed a blood clot in her legs.

BARON
04-23-2010, 12:36 AM
The leg scan had come back clear she had' had a d demur test which had proved positive the big problem is going to hospital were they do not know about Wagner's problems so you have to explain to them and they tend to not realise you have an understanding of the disease and all the problems it can course. This may sound offensive to some people but if you went in and said Ive got cancer there under standing is greater because they do not see this disease most of them do not have any knowledge of it even doctors say what is it and go off to look on Internet. In my own view what needs to happen is a bracelet the same as rare blood groups so that when you go to hospital you do not have to explain why you need not to be in a/e and need to be kept form general infections sorry if i rattle on a bit but we have to make the systems work better for every one

elephant
04-23-2010, 01:59 AM
I hear you. Even here in South Carolina I need to educate doctors and nurses when I go into the hospital. I really should tape myself ( educational video) and hand it to them. To grab their attention..I'll even dress like an elephant.

Col 23
04-23-2010, 03:01 AM
Maybe we need to talk to the Vasculitis Foundation about more education for the community and medcial profession globally. I know they are probably doing all they can but I think we need more. We are such a minority group and unusual in our presentations but it can be very frustrating. I often wonder because this disease is not curable and can only be managed if we are getting a fair deal because of that. (Does that make sense its 2.30am here and cant sleep). cheers Col 23

Sangye
04-23-2010, 07:25 AM
Even though Wegs is our reality, most docs and hospitals are never going to see a patient with Wegs.

There's a Buddhist saying that goes "Don't try to cover the earth with leather." It means just cover your own feet (with shoes)--just take care of yourself. I think it applies to Wegs. We can get frustrated and try to change the vast medical profession to focus on this rare disease-- that presents completely differently in each person, no less-- or we can all educate ourselves thoroughly about the disease, drugs and diagnostic procedures and be prepared to explain it to ER docs and others when necessary. It's possible. I know many parents of kids with cancer who can rattle off all the tests and details about their child's illness and treatment with the accuracy and terms used by their oncologists. One is becoming an RN and is sailing through the courses!

BARON
04-23-2010, 07:58 AM
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.

elephant
04-23-2010, 08:11 AM
I usually explain to people that Wegeners is like Lupus but worse! Then they know what I am talking about, then I explain further...

pberggren1
04-23-2010, 03:52 PM
Elephant, Durham is in South Carolina, right? It is part of an area called the Research Triangle, right?

Isn't there a Wegs specialist in Durham?

elephant
04-23-2010, 08:31 PM
Durham is in North Carolina. I am not sure if there is a Wegs specialist in Durham...I knew that Cleveland Clinic had a good Rheumy department and heard nice things about Dr Carol Langford. I am looking forward to my next visit. Going in June. Yea!

Lightwarrior
04-24-2010, 01:54 AM
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
04-24-2010, 07:23 AM
Very well put, Lightwarrior! :)

jola57
04-24-2010, 03:39 PM
That is so true Lightwarrior

BARON
04-24-2010, 07:20 PM
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
04-24-2010, 11:24 PM
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
04-28-2010, 07:02 PM
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
04-28-2010, 08:28 PM
Welcome back Dee. So glad your home, hoping you have a quick recovery!

Sangye
04-28-2010, 11:04 PM
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
04-29-2010, 03:50 AM
Welcome home Dee. Wishing you a speedy recovery. Get lots of rest and look after you. Say no alot.
Col 23

Natalie
05-05-2010, 08:24 PM
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. :)

Sangye
05-05-2010, 10:21 PM
Natalie, I'm happy to hear you're taking matters into your own hands! Even with the best docs and the best support network of friends and family, no one can watch out for your health better than you. The docs who missed your eye involvement might be haunted by it for the rest of their life. Or they might have forgotten about it. Whichever the case, they certainly don't think of it as often as you do.

There have been many times when a doctor wants to do something that I don't agree with--like every time I go to an ER they want a CT of my lungs because "it could be clots." I tell them I'm the owner of the body and the one left living with the consequences of their action or inaction, so I have the final say. That usually stops the "Doctor's orders" dynamic and we begin to work together. If it doesn't, I raise hell or ask for another doctor--whichever is most appropriate. I was never meek about my care before but I did allow various doctors to make decisions I knew were wrong, because I just didn't want to fight them anymore. Often I was worried about upsetting them because they were the only doc in town, etc.... I've since learned there is ALWAYS someone else to treat me. I might have to drive further or do research to find one, but better docs are out there.

Doug
05-05-2010, 10:29 PM
...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

Absolutely, my friend! You have discovered what many weggies have- and this is the start of becoming a great nagger (welcome aboard!)- that we have limited time and energy to deal with the ignorance, indifference, insurance bureaucratic simple-mindedness and foot-dragging, insensitivity of others to our "new normals" and their inevitable limitations on our bodies, etc., because each and every one of these roadblocks put in our paths can kill or maim us. Welcome to the Naggerside, Natalie, and use your understanding for the good of the next group of people to come aboard this forum!

elephant
05-05-2010, 10:42 PM
It took time for me to become a strong advocate, but It looks like the doctocs are starting to take notice. I am no longer afraid to speak my mind about what is going on with my body. If they won't do anything about it, I will go to another doctor. Be persistant! That is the magic word. No room for pleasing doctors, nurse's and anyone.
Good going Natalie!

Natalie
05-05-2010, 10:50 PM
thanks guys :D it helps knowing im not the only one second guessing our care or lack of it . And sangye I do know for a fact that the docs that missed my eye involvment are still haunted by it because I still see them .. Its not that they are bad docs but the lack of knowlage about the disease and the urgence needed to find and correct the problem Before It dose iraversable damage . Sad but true . excuse the spelling :)

DEE
05-05-2010, 11:47 PM
now i know were it comes from
while in hospital Baron said that i had to remember that this diease is presonal to me and at first i did not understand
im one that believes everything a doctor or consult tells me but not any more if i dont understand i ask and if i know i need something i tell them
and while in hospital i had a sinus prob which i know for me only a course of anti b immediately will help i would normally say nothing but this time i asked them to send for doc then told the docthe problem and what i needed and yes for the first time the tablets arrived fifteen mins later did not give theproblem a chance to get worse and of course less pain !
apparentley the ward computor was used alot the week i was there with the word WEGNERS be entered several times a few more educated i hope
im no longer the quiet mouse i tell people as it is life to short baron sometimes gets the raw end of the stick and i hope he knows hes my rock he always see me through the dark days usually by making me laugh even at things that arnt funny sometimes but saves an over uses ot water works (tears) .
my saying is there is someone out there worse than me so who am i to feel sorry for myself
good news for a change i got better inr test results today so no blood test for a week :) warfarin must be beginning to work although it make me feel sick after i take it for a while but consult says it should get better when body gets use to it
DEEx

Doug
05-06-2010, 12:05 AM
Interesting, isn't it? My experience with hospitals has been that the nurses in particular were very interested in learning more about my WG, and several of them actually printed out materials on WG they found on the internet that they thought I would find helpful, as it did. As carriers of a rare disease (said he as he put on his recorded message one more time....), we owe it to ourselves and those involved with us to be as aware of what that disease is as possible. I know you are too nice to be a nag, Dee, but I bet you still help others to understand WG in your own way. The comments above about the increased activity on the topic "Wegeners" gives proof, actually! "Oh yes, this is Dee. She's a kinder, gentler nag." Ha!

elephant
05-06-2010, 12:38 AM
Dee so glad the warfin is working for you. Time for a triple chocolate muffin!

DEE
05-06-2010, 01:12 AM
thanks Elephant and Doug your comments made me smile havent been able to do that much in the last couple of weeks but as a friend said today its ok to be scared you dont have to be brave and strong all the time :) thanks again DEE x

Sangye
05-06-2010, 02:42 AM
Dee, we can have compassion for those who suffer more than us, those who suffer less and compassion for ourselves, too. Suffering is suffering, and it all stinks. Compassion is different from pity--whether it's aimed at oneself or another. This is really hard to learn. It's taking me forever! :)

Natalie
05-06-2010, 08:41 AM
well said sangye

Doug
05-07-2010, 02:57 AM
Dee, we can have compassion for those who suffer more than us, those who suffer less and compassion for ourselves, too. Suffering is suffering, and it all stinks. Compassion is different from pity--whether it's aimed at oneself or another. This is really hard to learn. It's taking me forever! :)

This growing up, I didn't realize until I was much older than I should have been, is a life-long process! It is hard to realize the obvious. Or just accept it, perhaps.