Feed tube and PaceMaker

[jillinak]

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

As far as private insurance goes I'm not sure. I'm having mine done at the Providence Portland Hospital.

 

[jillinak]

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.

thank you.

 

[bigmark1954]

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.

Thanks adozi, your logic is spot on as usual. I need to ask my doc more specific questions about the procedure and benefits thereof.
Part of me wants to get the DPS right now, if it will make a noticeable difference in my symptoms......and part of me doesn't want wires hanging out of my chest. I am still forcing myself to work out 3 times a week,and light cardio 6 days. Just can't imagine doing it with a DPS. And part of me is confronting my denial...."maybe they made a mistake and I have BFS or something else similar".
I have clinic in a few weeks and I think I will request another EMG, by a different doc in the clinic....only because I am still baffled how one neuro could tell me I had a clean test, and then 5-6 weeks later I have another tell me I have a dirty EMG on both UMN and LMN........

 

[lgelb]

A list of DPS surgery centers is given on the Synapse Biomedical site.
As for the EMGs, EMG is not normally suggestive of UMN (upper motor neurons) lesions per se, apart from experimental techniques. Are you sure you don't mean upper and lower extremities?

 

[MaxEidswick]

>I am still forcing myself to work out 3 times a week,and light cardio 6 days.

I have an exercise bike, but thought it was ill advised to use it ... should I go back to it while I can?

sorry, did not mean to hijack post, will put in separate thd ...

 

[bigmark1954]

A list of DPS surgery centers is given on the Synapse Biomedical site.
As for the EMGs, EMG is not normally suggestive of UMN (upper motor neurons) lesions per se, apart from experimental techniques. Are you sure you don't mean upper and lower extremities?

Yes....I thought the doc said upper and lower motor neurons were dirty...maybe I am misunderstanding the info I received?

 

[bigmark1954]

>I am still forcing myself to work out 3 times a week,and light cardio 6 days.

I have an exercise bike, but thought it was ill advised to use it ... should I go back to it while I can?

sorry, did not mean to hijack post, will put in separate thd ...

Max, all three docs in my clinic have told me if I can push the weight and muster the energy to continue...... if it doesn't make me physically dysfunctional. For me it is a psychological issue, in that I feel like if I don't keep doing it.....I will become a complete couch potato and my decline will be accelerated. It is for sure kicken my butt to workout, but I will rest in my urn, I guess.

 

[Nikki J]

Mark perhaps they meant you had upper motor neuron findings on clinical exam or misspoke?
Things like hyperreflexes spasticity etc? Unfortunately the combo of upper and lower motor neuron findings is bad news for us!

 

[adozi]

Mark, my understanding is that you can choose what time to use it. Do make sure you don't work out too hard. I had three or four EMG. I don't know what they were looking for. I'm angry that it took so long and so many tests for the diagnosis.

 

[jillinak]

I had the surgery done on August 5, 2014. (put date incase in the future someone reads this). So far so good. the tube is taking a while to get used to. I dislike having this thing hanging from my body. It's annoying. But if it helps me gain weight then I'm all for it. I'm down to 144 not cool but I will regain it all. After so long of trying to lose weight, not it's hard not to read the calories, fat, sodium, etc. Just eat. Good Carbs though not junk. The pace maker - I need to use it 30 minutes a sitting working up to 4 hours a day before my September 15th appointment. a little every day. Today I shoot for 2 hours.

 

[Janie H]

I was told the the DPS would not be a good choice for me because my diaphram has dropped, I highly recommend the PEG, even if you are still eating.

Janie

 

[jillinak]

I was told the the DPS would not be a good choice for me because my diaphram has dropped, I highly recommend the PEG, even if you are still eating.

Janie

Janie - sadly enough I like my feed tube more than I thought possible. I has taken all the guess work out of "Am I getting enough calories". last night I tried mashed potatoes and fish but was tired of trying to swallow I opted for a ensure drink in the tube.

 

[GregK]

So, I was told last week that I would probably need the PEG w/in 6 months due to my weight loss.

I understand that I will still be able to use the pool at the gym (wear a shirt!), but am wondering how the PEG tubes and exercise in general get along?

 

[Janie H]

Greg, I was told not to get in water over the tube, I have no trouble taking a shower, I'm sure there is a gadget of some kind for swimming.

Janie

 

[jillinak]

I go back on September 17th to get the tube placed with a button. I will then be able to swim and do other things without the tube hanging out. Right now I have a sling type holder that I pin to inside of my shirt.