Feeding tube with Duodopa (Duopa)

[Jennyjenny2]

My HwP has been in hospital for 4 1/2 months after being admitted with aspiration pneumonia, the beginning of the nightmare.

It’s too upsetting to even put into words at this stage everything that has happened, and is happening.

They inserted a feeding tube in December. The video fluoroscopy showed everything going into the lungs and nothing into the stomach, hence the feeding tube. He is scheduled for a Duodopa next week. Since being hospitalised his PD symptoms are so much worse.

Has anyone had both of these procedures done with a ‘good’ outcome?

I’m so worried as it’s another foreign thing going into the body. I have spoken to others with the pump and they say it has been life changing but they don’t have the feeding tube as well.

[00Mark]

We are all rooting for you and your husband at this difficult time.

[Jennyjenny2 in reply to 00Mark]

Thank you 🙏

[jackedmonston]

I’ve been using the Duodopa output for more than a year. The tube that runs from my stoma to my small intestine is the same size as a feeding tube for infants. I flush the tubes daily, and move the tube a couple of inches to prevent it from fusing itself to my body, It has greatly improved my quality of life.

[Jennyjenny2 in reply to jackedmonston]

Thanks for replying and glad it has helped you. I’m concerned that the Duodopa tube runs inside the feeding tube to the stomach before continuing down to the small bowel, therefore increasing the risk of a blockage.

Have you had any problem with constipation?

[jackedmonston in reply to Jennyjenny2]

My problem with constipation started long before I got thr DUOPA pump. I have pretty much solved it with a daily smoothie that includes prunes and prune juice, wheat bran, frozen berries, pineapple, banana and Miralax.

[Jennyjenny2 in reply to jackedmonston]

That sounds like a good recipe, thank you. I’m looking at blended tube feeding when he gets out of hospital. The hospital won’t allow me to bring outside food in, yet they’ll allow it for people eating by mouth.

[healthabc]

perhaps consider the switch to Vyalev instead of the Duopa? (no surgery & non invasive, and as I understand it, Vyalev is more effective with less problematic issues)

Very unfortunately, a dear friend of mine w/ pd was recently going thru the same issues. The most unfortunate part is that the family doesn't know anything about pd, and are a liability. They sent him to hospice quite prematurely, and there he is effectively starving to death.

[Jennyjenny2 in reply to healthabc]

Unfortunately Vyalev is unavailable in Australia and will be till the end of the year at least. Still time to consider at a later date as the Duodopa can be removed.

Very sad about your dear friend. Does he have the feeding tube as well as the Duodopa?

[healthabc in reply to Jennyjenny2]

no, sadly. The family pulled the feeding tube and never looked at other options like Duodopa, or any other medication for that matter.

[MBAnderson]

Jenny,

My best wishes for you and Tony.

This nightmare will soon be over. When he finally gets the pump, that will provide much relief, leaving only the issues with the feeding tube, which will seem minor compared to what you two have been thru.

Marc

[Jennyjenny2 in reply to MBAnderson]

Thank you, Marc, for your very wise and comforting words. My head is spinning around trying to work it all out as Tony relies on me for all the answers… it’s a huge responsibility at times. And guilt if I don’t come up with the right outcome.

If I haven’t said it before, I want you to know how very much you are highly regarded and appreciated! I’m quite sure all here on HU feel the same!

Jenny 😊

[Godiv]

Jenny i’m so sorry this is happening. You may not be doing too well like at least in this country hospitals are a little ignorant about so maybe if he gets his pump and comes home that will help. Anyway I hope he’s OK and you are too. Hang in there!

[Jennyjenny2 in reply to Godiv]

Thank you for your kind words, Godiv. Yes I must look at the positives and not dwell on the ‘what ifs’. I feel a heavy load at times trying to do the best for my man!

We all have our challenges. You take care, too 😊

[Godiv]

You’re welcome! Let us know how he does. Take care yes me too