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shayden

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Reply with quote  #1 
Been in the hospital battling a 22 day episode, and the hospitalist (without knowledge of CVS or consult with GI) wants to send me home on home health - I do have a feeding tube.

I’ve never experienced this, and am concerned about the management of fluid intake, pain and nausea control.

This is the first time I’ve been forced out of the hospital - my longest stay is 37 days and they treated me until I was no longer vomiting.

Anyone have thoughts or experiences??
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scooky1

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Reply with quote  #2 
Hey
I just checked in here it's 3:44 am, that's when you wake up in old people time. this doesn't sound right, and if you are still in the Hsptl is there anything like a case manager on the floor or in the building? even if it has to do with someone from human services who could step in and help you.
Hospitalist's - they can be very trying! who are they? they have no office (you can find) and no way to reach out to them after they have done things that are or are not right.
Did you ask him why he thinks you should be alone at home whit the tube etc ? and why does he/she think it's ok?
How are you going to feed yourself? and what if there is a problem with the tube that needs attention right this minute?
I think since you are talking to a person who is suggesting this and you have no way of getting in touch with you should ask some Q's! write them down and number them 1 thru ? and try and nail them down on "what do I do if this happens" Etc.  "who do I call?" do I call you?
But it sounds wrong to me and I know the hospital people stick together and trying to go to a higher person doesn't work so well.
I had a problem once with a hospitalist in the ER where he would not admit me, I live in a small town, we had a big fire that went on for weeks. I had an attack and I was home 7 miles up a dirt road and was stuck, sick and just lay there for days, a friend came by to check on me and got me out, went down the hill to my doc's clinic. she called the hospital and told them to admit me. when I got there to the admission desk and told the lady who I was and why I was there, she seemed to know who I was and why I was there and said I was to go to the ER where I waited for over an hour and then the Dr. came in and said BLA BLA BLA and they gave me a couple rounds of meds that did nothing and said go home! I argued and argued with the Dr. and he pretty much told me "I am the Dr. and I say what happens in here" and walked out. A nurse came in and said she heard me arguing and wanted to know what it's about and I told her. She told me she was a nurse Practitioner and she would see what she could do? a little while latter she came in and said someone would be coming to take me up to a room soon.
Oh Dear lady I wish I had more for you and hope you feel better quickly.
                                                                       Let us know, Steve
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ginny

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Reply with quote  #3 
Memory lane here. Steve, such great advice.  Way back in the early days of this MB and under a different CVSA board of directors, we could not say a single negative thing regarding doctors and probably nurses. How helpful it is to hear what goes wrong, what goes right, and what did work. You said what you said very respectfully and hopefully this helps Shayden.

The little experience I had with adult care makes me extremely grateful for the very sad years of inpatient care my daughter had while growing up.  Always hard to have a sick child but once she was passed onto adult care, even with a fantastic doctor, the care just bombed. 

Thanks for the great advice!

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wynnak

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Reply with quote  #4 
Not sure if you’re still in or what, I apologize for being late to the discussion.
Did you mention maybe the adult guidelines to see if they would look at them?
We managed my son on home health and infusion clinics both for quite some time. But being that this is an uncharacteristic episode for you make sure they go through your chart. See if they will re-evaluate. I know that if we can manage fluid intake, they send us home.

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Blynda
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shayden

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Reply with quote  #5 
Hi friends - just a bit of an update...

As I close Day 26 in the hospital of this cycle, I hit my lowest of low points on days 24 and 25, and am now re-focused on getting to go home.

That being said, I am not out of cycle yet, but my clinical GI doctor was on call this weekend, so after some coordination with the hospitalist and Dr. V, and getting to see my GI doctor, we have a plan forward for home healthcare....

The goal is to send me home tomorrow. My doctors want me NPO and on tube feeds only for at least 7-10 more days so I don’t take any steps backwards. I’ll also be suctioning from my gastric port. I’m swallowing medication - the fluids come back up but the pills miraculously stay, so can hopefully continue meds by mouth versus grinding and taking via j-tube.

Home healthcare will be a new experience. I miss food like crazy. But I will be so thankful to be home with my wife and doggies to finish this cycle and start the healing process.

Thanks y’all for the ongoing support and feedback!

Cheers to wellness -
Serena
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ginny

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Reply with quote  #6 
This is progress and I will send positive thoughts your way.  I can imagine how much you miss food and hopefully seeing your wife, pups and just being at home will help ease that in some small way.

Thank you for the update.  Please let us know how things go at home.

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scooky1

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Reply with quote  #7 
Oh Dear Friend
Good luck at home, all my best wishes for you are on the way!
I just can't believe how strong you are and the things you seem to be able to handle. I kinda thought I had it as bad as it could get and I was pretty TUFF! you are my HERO!
Enjoy home and soon some food, I think the longest I went on just the TUBE was a week and a half and the first real food was divine !
                                       Let us know how you are doing,Steve
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shayden

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Reply with quote  #8 
Thank you both! And Steve - I am no hero... Y’all are the ones, along with friends and family, who help me get through my lowest lows. I feel so isolated by this illness sometimes, but I always turn here to know I am not alone. Similar to my service in Iraq, only y’all, who experience this same monster, can truly relate and share in our strengths and our struggles.

xx from Texas -
Serena
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wynnak

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Reply with quote  #9 
Shayden,

My son has left on tube feeding. Still Vomiting... but we had left comfortable with the decision. He was considerably better than when we had gone in, and mainly we needed to address the weight loss.

The tube feeds will address the fluids. Have they talked about how to address meds at home?

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Blynda
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shayden

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Reply with quote  #10 
Hi Wynnak -

Fortunately I can stand to lose a few pounds - this is just an extremely hard way to do it!! 😉

I have fortunately been able to take meds by mouth - water and bile will come up, but the pills so far are staying down. If I do need to crush and administer meds via j-tube, I will definitely get with the home healthcare nurse for direction.

I am looking forward to getting home and healing surrounded by my wife and doggies! This 27 days has done a number on my strength, so still quite the journey ahead.

I’ll be curious as to how this goes - if the home healthcare works via tube feeds and such, I can hopefully keep my g-j tube and avoid hospitalization in the future....

Fingers crossed this episode ends quickly!
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scooky1

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Reply with quote  #11 
Hey!

Me again, I was just wondering if you read my post on the new meds I am trying and how I heard about them, I don't know if they are working but I haven't been in the ER in months now. I know that means nothing due to the nature of this illness.
But heck it's worth a look.
Should you find yourself just laying around with nothing better to do, look up those posts you might want to relay this to your Doc.
I have had no bad reactions to either of them.
Iraq Huh? I went to Kuwait, Sand for days
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shayden

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Reply with quote  #12 
Hey scooky -

I have seen your posts and am super excited the meds are working. I am under the care of Dr. Venkatesan (my Queen of CVS), and have been since 2017. After my first visit with her and ramping on Nortriptyline, I was episode free for a whole year. I recently returned to Wisconsin in June before this episode and she is starting Emend as a prophylactic in conjunction with my Nortriptyline - I will be giving this combo a try before venturing to recommend other options.

Please, please keep us posted - I will continue to hope, pray and dream that we all get some relief.

Oh, Kuwait and it’s miles of sand - I remember it as if I was there yesterday!

Cheers -
Serena
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shayden

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Reply with quote  #13 
Hi friends -

I hope this finds y’all doing well! Today marks one week since I’ve been sent home with home healthcare and all is going well. The tube feeds are easy to manage and the nurses coming by were essentially taking my vitals and looking at my long ago healed tube site. I’ve requested discharge from the home health nurses.

Tomorrow morning I go in for a follow up with my GI. My vomiting has subsided and the nausea is mostly gone aside from a wave here or there. I am hoping to be off tube feeds before the rest of the week and say goodbye to this episode.

Do y’all know anyone else who suffers these long, chronic episodes?

I hope y’all are well!
Serena
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scooky1

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Reply with quote  #14 
Solid food sounds good ! And NO never heard of episodes like you have, I have had episodes last for days but only at the start, before I knew what I had and didn't know what to do.
One time when I was on a trip for work, I was living half of my time in south east Asia and got real sick, not knowing what I had I tried to wait it out, it went on for about six days. I kept telling my wife it would stop and on day six she said that's it! and took me to the ER in BANGKOK -   BUMRUNGRAUD hospital.
The nicest hospital I have ever been in! A huge suite with everything imaginable extra fold out beds for family, cable and a lanai with a view. I was in there for 4.5n days and the bill including meds and Dr.'s $650. out the door.
But over there, you don't get out the door until you have paid your bill or you must give them your passport until you pay.
                                                         Good luck and hope the monster gives you a break
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ginny

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Reply with quote  #15 

Shayden, what great news!  I think if you search through the archives you might find others who have long cycles, not sure anyone near as long as yours.  But maybe just enjoy getting better and not overthink?  I know for my daughter I overthought the whole thing but she kind of just lived her life, got sick, got better and moved on. Youth!  I don't think she thinks about those years and I do not ask.  I am still totally afraid of angering the vomit gods.  

Scooky, if you had to be in a foreign hospital, the India one sounds like top shelf!  

Be well.


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ginny CVSA Moderator
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