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shayden

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Reply with quote  #1 
Hello all - me again. Stuck in an episode and just reaching out to a community that knows my pain and heartache. I’m wrapping up Day 18 of my current hospital stay with no end in sight....

I try to stay strong, but as each day passes, I grow more weak and tired with no easing of symptoms. I really just needed a moment to vent with people who know the struggle. The chronic nature of my episodes truly kick me in the a#% and wear me down emotionally.

Any tips or tricks to help maintain spirits during looooong episodes?! Also love and am accepting words of encouragement!!

Hope all are doing well.
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ginny

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Reply with quote  #2 
I am very sorry for what you are going through.  Maybe reading what Scooky recently posted will help encourage you.

Most do eventually do improve.  Any chance of getting admitted for sedation to help knock out this cycle?  18 days is a long time.  if your doctor won't admit, maybe he would agree to IV's in his office or sending out a home nurse to evaluate you and start home IV therapy?



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shayden

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Reply with quote  #3 
Hi Ginny -

This is actually day 18 in the hospital, so have been getting meds for some time. Ativan just doesn’t seem to do the trick. I’ve requested the hospitalist contact Dr. V’s office Monday just to make sure we are on the right track.

I’ve kept an eye on Scooky’s posts and so glad he is doing well. I was just reaching out for general encouragement since the hospital gets to be quite a lonely place.
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scooky1

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Reply with quote  #4 
OH lady it's you again!

I wish it wasn't so, I have never been in that long, my longest was about 10 days, the only thing to do is watch TV and wait for the next round of meds, get to know the staff, it's funny how some staff members will come and talk for a long time, maybe they are being nice or ducking work anyway it nice to talk and hear about their lives. is that all they are giving you is Ativan? No pain stuff? well maybe ask for some that may help, sure helps me. I don't sleep well there so the staff is always amazed that every time they look in I'm awake.
The fact you are in the 18th day is amazing to me, are you still going thru the abdominal pain or vomiting or what is going on that makes it last so long, no I mean which one of the symptoms are you having now?
I am so sorry to hear this again, man it seems like you got the super-sized version of the nasty monster, They have been saying that there nation wide shortage of DAILAUDID !  there isn't really!
                                                                                                    Good Luck Dear I wish you go home,Steve
PS As you may already know about hospital cuisine and
the limited menu I got into tomato soup last time.
Oh Yea, have them bring you tea bags and honey during the day and I stock pile
it so I have tea all night and just ask the nurse
for hot water if you stay up like me.

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shayden

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Reply with quote  #5 
Hey Steve -

So good to hear from you! Yes - I do in fact have a super-sized version of the monster. I go see Dr. Venkatesan in Wisconsin and she confirmed that I have a chronic version of CVS - yay for me (NOT!!).

So I am definitely on more than just the Ativan... I am also on Zofran, Phenegran, Dilaudid, Percocet (they are weening me off Dilaudid), Protonix, and a super small dose of Benedryl (1/2 a tablet).

I have a g/j feeding tube, so my gastric tube is being suctioned and I only throw up when I eat. I am battling constant nausea and abdominal pain/abdominal migraine.

I am so happy to hear you have been doing well! I know you have suffered for a long time and a break is well over due!!

Hope you all are well!
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wynnak

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Reply with quote  #6 
Ugh.. time in the hospital. It just makes me cringe.. The boredom. 

Glad you reached out to chat to everyone. Helps kill those hours in the middle of the night when they wake you up for vitals. CAn you talk to the hospitalist about having a length of time to sleep uninterrupted to see if that will help you reset?  So hard to do that when they need vitals every 1-2 hours. 


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shayden

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Reply with quote  #7 
Hey Wynnak - how are things going with your son’s transition to adult care? Any new news?

I’ve been fairly lucky that the staff gives me a good time to rest after midnight; and they don’t wake me for morning shift change any more, so I am sleeping until between 9-10am each morning!

Fortunately I have a TV guide for the television in my room - I binge watch Datelines, 20/20, 48 Hours, HGTV and everything else outside of the Food Network!!

Hope all is well in your world.
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wynnak

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Reply with quote  #8 
Hi Shayden!

We are still working on things on our end. Trying to decide the best course of action. We have sent the adult guidelines to both the director of Neurology for the Doctor he was to see. His pediatric team was very excited to get the info. 

We have reached out to Dr. Boles to see about his process. and all the other alternatives that we have thought of. 

So just waiting on you know everything: referrals and authorizations. But, Mainly for my son to decide what he wants to do. I thought that the last episode would have scared him into moving on it, but I think he wants to forget it. Hoping he isn't becoming active again.

I prefer the let's not get to that point approach. Different for patients versus caregivers I guess. He doesn't remember the worst of the worst of his struggles. He was too sick to be aware of what was happening. We on the other hand watched him slowly wither away. We had to cope with news of how truly sick and close to not surviving that he was. 

I understand both sides. We have talked about it until we are all tired of talking about it. He thinks that I am panicking and pushing too much. I am panicking and trying to encourage that we be proactive because we are starting over.. we can't just call up the Dr and have her admit us now like we had in place before. It was a MASSIVE process to get and find care and I don't want to get to a point that we could lose him again.  But in the end who is right? It's an exhausting argument. And he is asserting his ability to be the one in charge of his health. 

We will get there.

So glad you get the time to rest. We had to be very assertive to get them to do that. We also have a protocol for when he has a disabling Migraine, usually caused by in-patient meds) for the room to not be accessed, but the meds he gets need significant monitoring. 

Feel free to start some new topics on here. I was going to start one about FAQs.. What are some Frequently Asked questions. I keep meaning to make a list, but get diverted to new topics.. Can any of us remember the questions we had when things started.

Hope your feeling better soon.



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shayden

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Reply with quote  #9 
Hey Wynnak -

Too funny - you and your son are complete opposites of my wife and I. I prefer to research, educate and track everything whereas she doesn’t want me so overindulged in the illness that I end up triggering myself stressing about triggers and CVS in general!

An FAQ section could be interesting, but because there is no one sized fits all for this illness, there could be some challenges in being able to provide universal answers.

I feel some of the primary/typical CVS questions have to do with symptoms, lengths of episodes, tests to be performed to rule out other illnesses/diagnoses, doctor recommendations, methods to abort, timing before going to ER....

I think most of the info is covered on the site and the site provides a lot of those answers...

Thoughts?

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wynnak

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Reply with quote  #10 
I have learned to relax in the charting and notes and all the stuff we used to and kind of still do. It’s more like habits now. So we do so many preemptive things that it’s second nature.

I agree that the site has a ton.. and I am the researcher :) so yeah.. I do think that not everyone is. So just a nice to have.. or find those answers here.. but yes it does have to be a general. There is not a one size fits all as you mentioned. Maybe a helpful tips for new patients.. or new researchers :)

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