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MaggieMae

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Reply with quote  #46 
Update, she's still at UPMC Pittsburgh and not doing well. Saturday, she started to feel better and then Sunday it was all downhill again. I am not a violent person, but I just want to hit something, this is just so frustrating. All I can do is pray and cry. 
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ginny

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Reply with quote  #47 
I am sorry.  The only thing I can think of at this point is to request a virtual consult with some place such as Mass General.  Maybe your current hospital could benefit from a fresh point of view involving several specialities consulting.  Do you know how her labs are (pancreatic, liver function, etc)?  

At this point someone her tests are probably abnormal but maybe comparing levels from a couple of months ago and progressing to the present time might help.

How is she being nourished?  If she is not getting TPN, maybe this would help her with nourishment.
She can get TPN with a peripheral line although it is caustic and her line will blow and need a restart.  Hopefully the TPN would be for a short period of time.



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wynnak

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Reply with quote  #48 
MaggieMae,

I call this the big girl pants moment.. you know secretly in my head.. 😉 

I have a massive stress relieving cry. Then realize that crying only relieves the stress for so long before it makes my head hurt. So I stop crying, pull up my big girl pants and get to work on finding a way to help. I can't tell you how many times I have had these moments. Don't even get me started on the songs that still make me cry because of the timing of them being played.. or simply becoming my anthem. "Fix You" by Coldplay.. Makes me bawl and become determined at the same time. 

I am in complete agreement with Ginny on the nutrition. This was a game changer for my son. His body just kept getting sicker and sicker with no nutrition. Think about it. Last time you had the flu or food poisoning.. after a couple days of being sick you are completely drained and have a hard time eating again after it huh? Still feel nauseous.. but then you start eating crackers or something really bland.. and slowly start to recover. Then you eventually get to a full meal and completely recover. Well, their bodies were or have been sick for so long.. it needs nutrition to recover. Catch 22 for CVS patients.

Our cut-off is 7 weeks, for my son. If he is vomiting for 7 weeks he gets a feeding tube. You may bring this up to them and emphasize any weight loss etc if you can. 

Please keep us updated. 

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Blynda
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shayden

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Reply with quote  #49 
MaggieMae -

I am so very sorry for the pain and frustration you are experiencing. You are no where near alone - I’ve spent 82 days in the hospital this year from three separate episodes. Each one, without fail, comes with a breaking point where I suffer panic attacks and release all emotion possible. Then, as Blynda said, I straighten my crown and move forward. The storms are dark, but the light at the end of the tunnel is beautiful. We discover a strength we never knew we had.

I also recommend an NG feeding tube that bypasses the stomach and goes straight to the intestines - this will provide much needed nutrition without the risk of vomiting. I typically end up NPO with tube feeds only and wait for the nausea to bypass before I attempt something from the liquid diet menu.

Please keep us posted and know we are here if you need anything.

Best,
Serena
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ginny

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Reply with quote  #50 
Love these responses-- pull up my big girl pants and straighten my crown.

One thing, for us, NPO was essential so the NG tube was to take the pressure off the digestive system and TPN was customized for feeds without going into the intestines or stomach.  

I think this shows how different we seem to be with presentation and how our medical team gets the each patient over the hurdle.



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MaggieMae

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Reply with quote  #51 
Thank you SOOOOO much for the support. She came home from Pittsburgh, she's still having vomiting episodes, but so much better and she is able to actually function. One thing that surprised me is that all four doctors told her to eat whatever she wants? That seems wrong to me, because she knows any spicy, saucy type food makes her sick. The doctors feel that food choices have nothing to do with the episodes? I don't know, we're just all so thankful that she's home and gets to see Dr. Levinthal next month. Praying really hard that he can help her. That you all again, I can't tell you how much I appreciate this message board and all of the insight and comments and helpful info. God bless you all!
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shayden

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Reply with quote  #52 
Hi MaggieMae -

So glad she is improving! Regarding food, if she has known food triggers definitely stay away from those specific foods. But yes - for people such as me who don’t have any identified food triggers, I can return to normal food fairly quickly after episodes primarily because when episodes end we return to normal health. After all, nothing is ultimately wrong with our GI system. That being said, when I have had long episodes I slowly ease back into my diet because my stomach shrinks and is more sensitive from all the vomiting. No pun intended, but allow her to follow her gut and reintroduce food based upon her comfort level - food may not seem appetizing or there may be some fear associated with eating. My strength and energy is the most difficult to recover.

Y’all continue to be in thoughts and prayers! As always, we are here if y’all need anything!

Best,
Serena
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scooky1

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Reply with quote  #53 
Hey MaggieMae

Back home is good and glad to hear it! the eat anything you want thing I don't agree with, it seems so many of us are so different in our triggers and our fixes, what works for me might not work for you. I have cut red meat out of my diet because the first time I got sick I had eaten steak and it has been a factor in some of my attacks including the last two. Good luck next month.
                                                                                                Steve
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MaggieMae

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Reply with quote  #54 
Thanks once again to all. She is watching what she eats even though the doctors at UPMC told her to eat what she wants. My son asked upon her discharge what to do until she sees Dr. Levinthal on 9/25. The Dr. on duty said if she gets an attack to go to a dark room and lay down....OMG, I'm not a doctor, but some of the things that I hear just make me shake my head. 

I'm just praying real hard that Dr. Levinthal can help, this is the longest episode by far for her and she's just so sick of it all and I know that she's depressed. We all give her pep talks but it has to be so damned hard, ugh. Thank you all again for listening and for your advice.
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robinlea

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Reply with quote  #55 
Hi, You might want to try 5-HTP it is a serotonin supplement and completely over the counter. I started taking it to help me sleep and it cut my migraines by 2/3 rds and I have only had a vomiting episode once in 6 months. I don't know if this will help you like it did me but might be worth trying - it will not hurt you.
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MaggieMae

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Reply with quote  #56 
Hi all, just an update. Our DIL did start to feel a little better after being released from UPMC Pittsburgh, but it didn't last. She's in day 66 of this episode. Her appt with Dr. Levinthal is in two weeks. Hoping and praying that he can help her. I so fear that she is getting depressed from all of this. She is the type of person who is always on the move, always. Now she has been off work for two months. She tries to sleep, throws up, gets a shower and repeat. It's so freaking frustrating that we can't seem to help her. I wish that she would join this forum. I told her that we can empathize, sympathize, pray and scream, but we don't know what she is going through. I'm hoping that she'll join. I'm not suffering with this, but the information that I've got from all of the members has helped me understand CVS so much more than any of the doctors info. Thanks to all for sharing and caring. Take care. 
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wynnak

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Reply with quote  #57 
So did she stop vomiting in between? Or what does feeling a little better mean? She should come in here. She just missed the support call. We talked about the depression that goes along with CVS a lot. Would have been a good call for her to be on.
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shayden

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Reply with quote  #58 
Hi MaggieMae -

Thank you so much for the update. I am very sorry to hear that she is still not doing well. I, myself, have been out of work since June due to a long episode - fortunately today I got the green light to return to work Monday - so understand what she is going through.

When is the last time y’all have been to the doctor or hospital for bloodwork to check her levels? With such a long episode, it is critical to monitor bloodwork to ensure there are no imbalances that could lead to more serious health concerns. Potassium, in particular, can become dangerously low during episodes and is vital to monitor.

The battle with depression in CVS can be a beast - from feeling like a burden to caretakers to grieving a part of yourself that you worry is no longer there, the cycle of being sick and tired of being sick and tired often brings us to dark days. I highly recommend counseling - I have been fortunate to find a counselor who specifically specializes in chronic illness and it has been a huge blessing. My counselor has a chronic illness herself, therefore understands the roller coaster of emotions a diagnosis and illness can bring.

Also, please continue to encourage her to join the group - it has been a life saver, especially in my dark times, to know I am not alone. We are here for her if and when she is ready....

Y’all remain in my thoughts and prayers!

Hugs from Texas -
Serena
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scooky1

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Reply with quote  #59 
Hi Maggie Mae

Sounds like it's going to be a long two weeks till the Dr appointment, I agree 100% about depression from this or any illness that drags on like what she and most all of us go through. I know the feeling,the excitement of seeing a new Dr. and the hope that this Dr. is going to have a fix and my life is going to change the next day.

I really hope that happens for her sake! but don't count on it and just be aware that this is just another step we all go through, your DIL and Shayden I think are the only ones I know of that have record breaking long cycles.

Talking with or seeing a therapist I believe is important! I live alone and have only myself to think about, My sisters are all I have to help and one lives in another state so it's just us two.

The thought of having this illness and being a parent, a spouse or even having a pet is just way more than most people are prepared to deal with. I know what it was like the last time I was house sitting, got sick called 911 and the EMT's let the cat out in the middle of the night. We live in the desert and it's full of critters and things that eat cats, I didn't know what happened to the cat until I got back two days later. The cat made it and my sister will still be letting me house sit but still I was freaking out till I saw the cat. The thought of having family, kids etc could really make you nutz!

St Charles med. center in Bend Or. has a therapist walking the halls seeing people like me who had been in for some time and at that time I had been in about 12 times in about six months.

He had seen my chart and knew a bit about what I was going through, it was helpful and gave me a break from watching judge Judy and eating jello so if she can get with someone like that it may be a really good thing to keep her in a good mental place.
                                                                                                   Would really like to chat with her [smile]take care, Steve

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