Old 01-14-2016, 01:44 PM #16 (permalink)
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Default Re: Appt with Pulmonologist

Katie I can really relate to where your husband is. I too am down to 129lbs but, the Peg Tube has helped so much with making sure I am hydrated and with taking meds and the supplemental formulas (which taste like sh*t) so glad they go down the tube. My primary doc also gave me an appetite stimulant called megace which has improved my appetite. I believe my FVC is lower than his but I do have the Trilogy and Laurie is helping me to get the right settings.

Him losing weight WILL hasten his progression and if he wants to stay out of that wheelchair he needs to consider the tube. Never give up.

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Old 01-14-2016, 02:11 PM #17 (permalink)
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Default Re: Appt with Pulmonologist

Katie, it all sounds so familiar ... especially how you end up the bad guy in the middle of it all.
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Old 01-14-2016, 02:16 PM #18 (permalink)
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Default Re: Appt with Pulmonologist

Vince you probably know that megace increases blood clot risk, a risk we already have if less mobile. Please be vigilant
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Old 01-14-2016, 03:26 PM #19 (permalink)
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Default Re: Appt with Pulmonologist

Primary thought it would be o.k. since my legs are not affected as of yet and I still get around pretty good. Thanks for the warning.

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Old 01-14-2016, 08:47 PM #20 (permalink)
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Default Re: Appt with Pulmonologist

Thank you Vince. His PCP prescribed mirtazapine hoping to boost appetite and help with sleep.
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Old 01-14-2016, 10:18 PM #21 (permalink)
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Default Re: Appt with Pulmonologist

Hope it works. It is an antidepressant so not specifically an appetite stimulant. If you don't see a change in his appetite after 2 or 3 weeks ask about the megace, particularly since he is still mobile. Megace is utilized a lot in nursing homes and from what I was told it really does help with weight gain.

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Old 01-19-2016, 10:07 AM #22 (permalink)
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Default Re: Appt with Pulmonologist

They gave us a Trilogy and a Respronics BiPap to see which he likes better. We also got a cough assist. The weekend was awful. The machines blew too much and he fought both of them. I called the RT and she made changes on the Bipap via the Modem and that made things better. We took the Trilogy in and she modified those settings and we are going to take that with us on our trip. (it has day time and night time settings) We went to the original neurologist and talked about the PEG. He wore the mask for about 5 hours last night and feels alright this morning. Whew... though sleeping with one ear open listening for the leak in the mask kinda makes my neck hurt.
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Old 01-19-2016, 01:54 PM #23 (permalink)
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Default Re: Appt with Pulmonologist

Still trying to get used to my Trilogy. Laurie (lgelb) has been a great help in adjusting the settings and Marty has been helpful in suggesting different masks. I just ordered the Dreamwear nasal mask which has less headgear and has a strip that fits under the nose to deliver air. nothing goes up the nostrils and the hose hooked to the top of the head and has a swivel so lying on either side or back is not affected and you don't get tangled up in the hose. I've not been able to use mine for more than a couple hours at a time but am hoping the new mask will make all the difference.

I hope you have a wonderful trip and I hope he is warming up to the feeding tube. The longer he waits the more difficult recovery will be.

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Old 01-19-2016, 02:27 PM #24 (permalink)
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Default Re: Appt with Pulmonologist

That's great that he wore the mask for 5 hours already! I hope you get the settings perfect soon so you can get the most out of it.

Keep us posted on how you go with getting him settled into it and if it help level his behaviour at all.
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