NeuRx DPS

[SixthKid]

My Dad is going to Brigham & Womens today to be tested for the NeuRx Diaphragm Pacing System. I read the previous thread regarding this (it's now locked) and although I am thankful for all the research that is out there being done, whether it is for ALS or cancer, etc. I just have my doubts if my Dad will be able to do this or should?
I don't want to sound negative but I just feel that his breathing isn't so good now. His ALS Dr's told him about 1 1/2 months ago that if he was considering the feeding tube he had to do it soon because of his lung capacity had diminished a little. He had no plans of getting a feeding tube anyways so said no.
I don't know? part of me thinks if he is able he will do it, even if it's for research & that's great but I don't want him to have any complications from it either.

I guess I will just say a prayer & things will work out the way they are suppose to be:-(

 

[rknt50a]

sixthkid,

In case you had not seen this article, I hope that it might be helpful --

A Closer Look: Diaphragm Pacing System | MDA/ALS Newsmagazine

I understand that the patient in that article was told that his breathing was getting poor, so get the feeding tube asap... and that's when he and his wife researched and found the DPS trial.

God bless you and your family.

r

 

[momap53]

Our thoughts and prayers are with you as your Dad checks out this option.
Please try to understand that many of us just want to try to do something so that other PALS in the future will have more options.

 

[SixthKid]

Thank you rknt50a ~I will check out that link

momap53~don't get me wrong I am all for research. My Dad is actually doing the Ceftriaxone trial. He figures if there is something he could do to help save others from this disease why not participate. I just feel like he is getting so fragile now. He seems to be coughing a lot more. His speach is horrible & then there's the breathing. I just don't want anything to happen that will make him go down hill faster. I'm being a protective "little girl" & I want my Daddy around as long as possible (he's 75~so I'm no spring chicken lol)

 

[SixthKid]

Just read the article:

If Dad gets to breathe better with this & sleep in his own bed instead of the stupid recliner that would be so GREAT!

Keeping my fingers crossed

 

[SixthKid]

Disappointing news~Dad can't do the procedure. I kind of figured he wouldn't be able to but had to look into it anyways. If there's a chance you have to try. His FVC was @ 36% which is horrible! Early December it was just under 50%. Because of this and the blood clot issues, back about 5 months ago he was admitted to the hospital with multiple blood clots in his lungs, we all thought for sure he wasn't coming home then but the Dr's pulled him out of it. So these combined issues he is not able to do the procedure.

Dad was disappointed, he was a little hopeful.

Now what?

 

[tammyg]

Hey 6, pray, you know we are here if you need something, you can PM me if needed. Stay strong.

 

[MuonOne]

SixthKid:

I am not sure if you realized that this thread is also on the NeuRx DPS pacer:

https://www.alsforums.com/forum/als...ood-over-50-newly-diagnosed-als-patients.html

A moderator here advised that threads here automatically 'lock' after an amount of time with no new posts.

Do you have five siblings?

 

[momap53]

So sorry your dad was disappointed.

 

[SixthKid]

MuonOne~I do have 5 siblings ;-)

 

[sadiemae]

Here is an update on clinics

http://www.synapsebiomedical.com/als/usneurx-centers.shtml

 

[notgivnup]

Does anyone know if Medicare will pay for this device and placement yet?

 

[tammyg]

Thinking of you Six.....