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scooky1

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Reply with quote  #16 

Dear young lady
in the words of the late great Sam kinason oh oh oh ohhhhhh!
you may be told you have all kinds of things {hiatel hernia) etc  please don't let anyone talk you into getting surgery! without second,third and maybe more openions.
ER,s and the people who work there can be so mean, I haven't been in almost 3 months but the last epsodes I was in seven days in a row. You mentioned shame? no way! it is them who should be ashamed.
Yes please coppy that last post but even more perhaps the whole page of posts and give it to your new doc and the ER. please don't stay home! call 911
and go in that way (just don't let them stick you) they are just practicing, wait till you get to the room and if you can have someone with you, a whitness, they hate that! but please do not stay home, take as much paper work as you can but know this, it won't be the last time and if you do have CVS, well welcome to the club (the worst club ever) if you can get this new doc to give you some meds (the same ones I have) private message me and I will tell you but it is the same ones they use in the ER and a bit more, if the doc says no, get a new doc. Don't waste time with him/her it took me years to find my doc.I live on these meds and really they are simple to get but once you live on them it is true, they are adictive and thats that!. I hope this isn't too much to handle but it is what I have found after 23 years of CVS. PLEASE don't stay home. they should be ashamed but you will find that is not the case, but you know that. try to be stress free as you can and use the ER at will,take the paper work and get home meds. Be well, Steve
Oh yea, Oh oh oh ooooooooh!

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Deidre

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Reply with quote  #17 
Thank you so much for your response. I have a question tho..if you have the medications they give you at the hospital, why did you just go on a 7 dayer? The shot they give me at the hospital completely stops the vomiting and pain 

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Deidre

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Reply with quote  #18 
And could you please tell me how to pm you? I'm not too smart with this computer thing!  Again thanks for your reply and advice!
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wynnak

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Reply with quote  #19 
There are plenty of times that we have come and gone from the hospital still vomiting. My son's episodes used to be 2 weeks. Which we could manage with fluids and meds.. But his last few have all been 7 weeks. There is not one medication that works for everyone to stop an episode. If you have found something.. that is fabulous! We just manage or maintain the best we can. We go to the hospital if we have to, usually for fluids. But try to avoid it if we can. But, we have been doing this for awhile. I agree with Ginny and Steve.. when you have other health conditions you need to seek immediate help. We are able to hold off, mainly because my son's episodes start slowly then ramp up. He still keeps a portion of food and fluids in the first few days (we have weighed and measured in and out.. we are gross like that) as a part of our process for deciding on hospital times. It's when his output is equal to or more than his input that we start looking for hydration. Not everyone has episodes like us.. each persons episodes are a little different. I have heard of people having them for just hours. They can dehydrate quickly.

Diedre if you click on the persons's name that you want to PM (left column with the dot next to it) that should pull up their information. On the left had side it will say Email or Private message (name).

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Deidre

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Reply with quote  #20 
I just wrote a fairly long response to this but I've been having trouble getting things to go thru..please be patient with me, I am going to get some help with how to answer correctly, this disease is brand new to my brain and so is using the message board and emailing. Be in touch soon when I know better what I'm doing. [frown]
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Deidre

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Reply with quote  #21 
I'm not clear yet on how all this works. Just want to share what happened last weekend. After 18 hours of the vomiting I had severe back pain, then heart pain. My step mother who is an RN took me to ER. After 3 shots of Zophran reglan and a GI cocktail, 6 hours later they finally gave me a shot od morphine. They admitted me as my blood pressure was high and having a fib . They had me drink Lidocaine mixed with malox! What a joke. The morphine stopped the nausea and back pain completly. They wanted to keep me to see a GI surgeon ..I resisted because I already had am appt the following wednsday. They kept asking me why I were to go home. Well when this thing stops it stops. I had my appt. On wednsday and I am having the scope run down.in June. The cat scan shows a small tear in esophugus, I know from all the vomiting I've done for 12 years now. I now have very bad teeth after all the vomiting and about to get dentures. I'm ashamed, o never even had a cavity until I was 28 years old. I'm thrilled to know this is a real thing I've had but so disgusted with the Dr.s for not recognizing it sooner. I will be praying for all if you and myself thru this journey..very grate full for this forum
Please be patient with me navigating thru all this. Night and God Bless
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ginny

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Reply with quote  #22 
You are doing a great job navigating through the message board as well as posting correctly and asking questions and offering information.  
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ginny CVSA Moderator
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Deidre

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Reply with quote  #23 
Hi Ginny, thank you for responding. I would love to send this to the ER. Could you tell me how to go about doing this? And to my Family Dr. and GI Dr.
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ginny

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Reply with quote  #24 

Point you mouse over the message you want to copy.  Then right click to highlight and copy the message.  You can then carry the copied message into an email or word document by right clicking over the body of the email or word doc and right clicking to paste.

You can also do this by highlighting and then at the top of the page under EDIT, click copy. Repeat into the email format or word doc and again at EDIT, click paste.


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ginny CVSA Moderator
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scooky1

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Reply with quote  #25 
I posted this on another thread but thought it might get read and get the message out about paper work to take to the ER but being prepaird for the next time, have your hospital bag ready,change clothes,etc, directions from your doc pluss a copy of the guide lines, as much as you can that pertains to you. here is what I wrote after my last episode. origenal post "the monster is scrathcing at my door" it took about three weeks of fighting it off until I ran out of meds.
"So the monster came in the door yesterday, I went to the ER here cottage hospital in solvang ca. I had all the paper work and the doc was great, one shot of daludid and some compuzine and some etc's and gone, this was the first time an ER doc took the time to look at the paper work and just gave me the drugs. get your papers in order and be ready! it really can help, BUT not always, just be as ready as you can because it is coming and we all know it. having this port has really helped, just one stick and done, but it does have it's draw backs, monthly flushings etc. anyways the monster is gone for now, see her next time" be well guys, Steve __________________ Steve D Cook
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Deidre

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Reply with quote  #26 
long story short..7 years ago I had to call an ambulance twice in one week. 1st time I went to ER and was sent home still puking. 4 days later not better I called again. when the same ambulance drivers came after me, they walked in and said "What is it this time Ms.Grewell? how humiliated I felt and that's whats kept me at home all these years. I have since gone but only when my heart was acting up. In June of 2015 I went and they said I had had a mild heart attack. All from puking! I was admitted May19 this year for same thing after throwing up so hard. I'm now trying to find pain meds on the street as it will stop the whole thing altogether. Very sad. I'm severely depressed and wont make plans of any kind because I'm so afraid of bringing the puking thing on. I'm totally isolated now, know one gets it. suicide has been greatly on my mind for years now. I need help, our town is so full of drug epidemic that all the Dr.s think you just want a high. That's not me. I just want help. I'm so depressed.
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Moon

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Reply with quote  #27 
I have been going through this with my boyfriend for over 4 years.
They labeled him a drug seeker and blamed it on weed.
We just found out what was causing his CVS.
He is allergic to almost every food known to man kind.
He hasn't been back to the ER, since we have become vegetarians. We don't buy anything from the grocery store anymore.
The allergist put him on something called cromolyn sodium.
Pryor to finding out that this was all caused by the crap they put in our food to preserve it, he was in the hospital every other day, vomiting and in a ton of pain.
He had upper GI's, lower GI's, he was told it was all in his head, nothing was wrong with him.
Try an allergist, test for meats, dairy, breads, etc.
It's known as "leaky gut syndrome"
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ginny

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Reply with quote  #28 
Deidre, I am so sorry you have been mistreated.  No human should be made to feel this way.  If it helps at all, over the years I have heard from other adults who have been treated poorly and been reluctant to put themselves through the mistreatment again.

CVSA is working hard on getting adult treatment guidelines.  Once those are in place there should be more knowledge and help for adult CVS patients.  I know that does not help at this moment in time.

Are you willing to call the patient liaison at your local hospital?  If you can meet with this person and hopefully a hospital social worker about the lack of respect, it might be helpful.  There is supposed to be a Patients Bill of Rights posted in a prominent place in every federally funded hospital.

It is hard to fight for yourself when you are already ill.  If you do not feel that you can meet in person with a patient advocate, maybe you could write a letter and ask that the liaison or other rep call you?  Give a deadline to hear back.  Being empowered can make a huge difference.

Please keep us updated.  Street drugs are very dangerous and if you are caught you might end up incarcerated with an increase is the CVS cycles.  Please seek out help.  If you are suicidal please call Samaritans in your area to talk things through. If you do not have the number to reach a local branch of Samaritans then let us know and we can look up the number for you.

We are here to try to offer support.  


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ginny CVSA Moderator
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Deidre

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Reply with quote  #29 
Thank you so much for your support. I will Def check out a patient rep. I've never heard of this before. I have alot of paper work ready if I have to go, but I'm there for hours before they decide to help or just send me home. My adult children beg me to go, but know what I go thru when I do. I will call and see about talking to a patient rep tomorrow. I didn't know you could do that. Thank you so much. I spend so much h time worrying about the next time I get nothing done. I'm on it! Love this site and please as always, be patient with me, I'm very new to doing anything on the net. [smile]
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wynnak

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Reply with quote  #30 
Your doing good. I always recommend meeting with hospital advocates. I have done more than my fair share of those. Keep fighting. I know that sometimes it is hard. It sounds like you have a supportive family. Have them help you. Even if it is to go with you to an appointment.
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