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Eating issues 3 months post transplant. Still have feeding tube

Posted by chas434 @chas434, Apr 6 8:17am

My husband gags when he puts solid food into his month 3 months post heart transplant. He continues to be nauseas and has constant diarrhea over night when his feeding tube is running. Not during the day when it is not running. It’s a viscous circle that is delaying rehab (he’s been at an inpatient rehab for 5 weeks). Doctors think it’s most likely his meds and they’re looking at changing them a bit if possible. The taste and texture of food makes him gag. There may be a psychological component that is effecting his GI. I’m told it’s not uncommon after heart transplant. They’re giving him Atavan that might be holding the nausea at bay. Doctors are also saying it may be a matter of time and be patient. Has anyone experienced similar gagging etc. when trying to eat a tiny bit of solid food? How did it resolve? How long before you started to be able to accept food and get off of a feeding tube. All thoughts and comments encouraged. Thank you!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 12 2:29pm

@chas434, it sounds like your husband is having a rough go of it. This must be worrisome for you and almost impossible to be patient as the doctors advise. It's hard to see a loved one suffer.

@2024bigcountry recently wrote about eating issues after his heart transplant and may have experience to share. I'm also tagging fellow heart transplant recipients like @danab @msrlallen @estrada53 @bellini @dennisprater @scottij @glinda @fatherscaregiver @exhcmposttx who can offer their tips and support.

Chas, has your transplant team suggested having a consult with a dietitian experienced in transplant to work with your husband? I wonder if a dietitian or speech pathologist who deal in swallowing issues could help with the gag response. Might be worth asking about.

How is your husband doing today? How are you?

REPLY
2 replies
scottij | @scottij | Apr 13 2:25pm
In reply to @colleenyoung "@chas434, it sounds like your husband is having a rough go of it. This must be..." + (show)
@colleenyoung

@chas434, it sounds like your husband is having a rough go of it. This must be worrisome for you and almost impossible to be patient as the doctors advise. It's hard to see a loved one suffer.

@2024bigcountry recently wrote about eating issues after his heart transplant and may have experience to share. I'm also tagging fellow heart transplant recipients like @danab @msrlallen @estrada53 @bellini @dennisprater @scottij @glinda @fatherscaregiver @exhcmposttx who can offer their tips and support.

Chas, has your transplant team suggested having a consult with a dietitian experienced in transplant to work with your husband? I wonder if a dietitian or speech pathologist who deal in swallowing issues could help with the gag response. Might be worth asking about.

How is your husband doing today? How are you?

Jump to this post

@chas434
I am sorry for the challenges you and your husband are facing. I really have nothing to add. My transplant and recovery went very smoothly. My Medical Masters at Mayuo now describe me as the most boring transplant patient they have ever had. I told them I prefer the words stable or disciplined but I will take boring.

Good luck. I can't imagine the emotions you are riding.
Best always,
s!

REPLY
1 reply
cromme50 | @cromme50 | Apr 14 9:56am
In reply to @scottij "@chas434 I am sorry for the challenges you and your husband are facing. I really have..." + (show)
@scottij

@chas434
I am sorry for the challenges you and your husband are facing. I really have nothing to add. My transplant and recovery went very smoothly. My Medical Masters at Mayuo now describe me as the most boring transplant patient they have ever had. I told them I prefer the words stable or disciplined but I will take boring.

Good luck. I can't imagine the emotions you are riding.
Best always,
s!

Jump to this post

I like "boring"! I also like when specialties "fire" me as in "we are done, you don't need to be seen by this department anymore". Being disciplined is huge. That is helpful is getting fired sooner.

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Mentor
Dana, Volunteer Mentor | @danab | Apr 14 4:39pm
In reply to @colleenyoung "@chas434, it sounds like your husband is having a rough go of it. This must be..." + (show)
@colleenyoung

@chas434, it sounds like your husband is having a rough go of it. This must be worrisome for you and almost impossible to be patient as the doctors advise. It's hard to see a loved one suffer.

@2024bigcountry recently wrote about eating issues after his heart transplant and may have experience to share. I'm also tagging fellow heart transplant recipients like @danab @msrlallen @estrada53 @bellini @dennisprater @scottij @glinda @fatherscaregiver @exhcmposttx who can offer their tips and support.

Chas, has your transplant team suggested having a consult with a dietitian experienced in transplant to work with your husband? I wonder if a dietitian or speech pathologist who deal in swallowing issues could help with the gag response. Might be worth asking about.

How is your husband doing today? How are you?

Jump to this post

Hi @chas434 Yes I also had similar issues after transplant. Solid food like whole meats and even salad was very hard to eat and basically had me gagging a bit. I found soft foods went down much better like mashed potatoes, Soups, pudding and similar consistency. Mine only lasted a few weeks and I think as they lowered the prednisone mostly is when solid food became easier to eat. I also took the anti nausea meds most mornings just to get my pills down. So I think mine was medication driven. I'm now 7 years post and I have no issues with any foods. This period in the transplant process at most lasted a couple of months. So im not sure what to say might be your issue as I'm guessing that they have lowered most of the meds for anti-rejection. I ,like Colleen said ,did work with the dietary dept of Mayo to find ways to get calories. I also drank protein drinks and it took a few different makers to find one I liked. Oh Ice cream was another food I could eat. It was weird that solid meats like chicken or even hamburger set off my gag reflex. Salad which for me is something I love besides a great steak were off the list for a while. But thank God I got my favorite foods back after a bit of time. I definitely was worried at first. Let me know if I can answer any other questions. Give it time and you'll be even happier when you get passed this period.

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