Feed tube and PaceMaker

[jillinak]

things are moving to quickly. I was diagnosed on June 25 and second on July 11. Both doctor have suggested a feeding tube, diaphragm pace maker, breathing machine, cough assist machine, etc. I feel great. I just can't talk. I used to be a runner and taught Insanity, but I get fatigued and have a hard time breathing. I'm scheduled for surgery on August 5th. Is it just me or are the doctors trying to prolong my live with all these gismo?

Thoughts?

 

[Nikki J]

Well yes they are trying to prolong your life but also to enhance the quality of life for you. You will feel better and do better with all of those things. I am sorry things are hitting you so fast. It sounds like your neuros are proactive which is a good thing in my book!
Best of luck with surgery. The sooner the better is the general rule

 

[Atsugi]

Don't forget you are in control of your own healthcare. If you have questions, force your doctors to provide answers.

Usually doctors aren't used to being asked lots of questions, but when I gently remind them it's a terminal disease, they find the time and patience.

 

[MaxEidswick]

>I have checked into the possibility of getting VA Benefits (as congress passed a law that anyone with 90 days of active service and has ALS should be consider 100% disabled)

if you have not yet, contact the pva. important for vets.

otherwise, Ditto that! to Nikki/Mike.


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Max - Monday, July 21, 2014 12:13:03 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.

 

[affected]

Hi Jill,

I do agree with your doctors - have these procedures done now while you are in fairly good health. Otherwise you are making a depleted body cope with even more.

The pacemaker can't be inserted unless your phrenic nerve is working, so if you delay they may say you are no longer eligible.

The feed tube doesn't have to be used, but is there ready. Do you have any problems swallowing liquids? The peg can become a great relief allowing you to stay hydrated.

I would think, JMHO that they are trying to help you have best quality of life. Yes it may keep you going a bit longer too, but more importantly it may keep you going that bit longer in a better condition.

 

[dalvin]

I will only say that if your going to do it, now is the time, the sooner the better. Each item is a personal choice, but again I can't stress it enough, whatever you decide you want, do it now while your body is still strong enough to cope

 

[patrick123]

I had my feeding tube and DPS put in almost a year ago. The DPS has kept my diaphragm strong my FVC is at 70 . Would I do it again YES.

 

[jillinak]

thank you everyone for your response.

 

[nebrhahe53]

Are there certain centers where the pacemaker is put in or can any major hospital do it? Does private insurance pay for it?

 

[Nikki J]

It is becoming more common and more surgeons are getting trained but you want someone who has done a good number of these. There is a window of opportunity as it does not work if your diaphragm is too weak. Talk to your clinic about it. Ask about ultrasound/ EMG to assess where you are. I think people have had it paid for. You might have to fight for it if you need a prior authorization so you want to be sure your pulmonologist and neuro are on board for this

 

[Jeff Long]

Jill,
Smarter folks have already pointed out the practicality of having the DPS done while you're still strong. I had mine done a year ago; however, decided against the feeding tube at that time. I was (and still am) able to eat whatever I want, so the idea of having the tube put in early was not appealing to me. The thought that I'd have had it for a year already without using it makes me happy with the decision too!
Point is, you make the final determination on what you want or don't want, and when. In most cases, our doctors are looking out for our best interests so I wouldn't be too skeptical of them. Still, I don't do everything on their timelines either.

 

[bigmark1954]

Jill,
Smarter folks have already pointed out the practicality of having the DPS done while you're still strong. I had mine done a year ago; however, decided against the feeding tube at that time. I was (and still am) able to eat whatever I want, so the idea of having the tube put in early was not appealing to me. The thought that I'd have had it for a year already without using it makes me happy with the decision too!
Point is, you make the final determination on what you want or don't want, and when. In most cases, our doctors are looking out for our best interests so I wouldn't be too skeptical of them. Still, I don't do everything on their timelines either.

Jeff...what symptoms made your docs think the DPS was right for you? Just curious, I had a Sniff test today and don't have the results yet. My symptoms are fatigue, shortness of breath, and not enough wind to speak more than 3-5 words at a time....sound familiar?

 

[lgelb]

DPS criteria for the ALS trial are here. Two participating hospitals in TX.

 

[Jeff Long]

Jeff...what symptoms made your docs think the DPS was right for you? Just curious, I had a Sniff test today and don't have the results yet. My symptoms are fatigue, shortness of breath, and not enough wind to speak more than 3-5 words at a time....sound familiar?

Mark,
About the same... tire out quickly, short of breath when doing the basics, yawning ALL the time, and unable to breathe lyaing down. I don't (yet!) have shortness of breath when I talk, but my speech is slurred and shakier than Rosie O'Donnell at a buffet.

On an unrelated note... had to add cruise control to the E-Glide for my ride to Sturgis. HD quit making them available in their parts dept, so had to go aftermarket for $795. Ouch!
No way I was going to be able to go that far without it though since my right arm is burning out fast.
Did I mention that ALS sucks!?!?

 

[adozi]

You don't want to wait until you need the gizmos to get them because the insurance process can take forever. My PWC took forever. By the second clinic, my lung capacity was too bad for a DPS... Get everything now, imo. You want the over a year of the DPS will give you? By the time you consider it, it may be too late.