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sdpscl

New member
Joined
Jun 25, 2012
Messages
4
Reason
PALS
Diagnosis
09/2011
Country
US
State
New York
City
Port Jefferson Station
Hi Everyone,
I've been a member for a few years now. I feel a little Embarrassed that I've never posted anything until now. I have gotten a wealth of information from everyone.
Here's a quick rundown about me.
I'm 58, Married to my high school sweetheart for 36 years. I was diagnosed August 2011. My progression was typical. Starting with weekness in arms, then legs. Breathing has been with bi-pap 24/7 for over 2 years now. I've been confined to a power chair for 2 years also. I require round the clock caregivers to attend to my needs. Over the last year I started losing my voice and swallowing is almost impossible. I use a eye gaze device to communicate with.
I was supposed to get a feeding tube 2 years ago. But because I had Bariactric Surgery years ago, they couldn't place the tube the normal way. I would have had to have surgery to get it done and the likelihood of a Tracheotomy. At the time I had no trouble swallowing, so I opted to wait until it was absolutely necessary. Two years later the time has come.
I'm scheduled for surgery Monday morning for feeding tube & Tracheotomy . In a odd way, I'm actually looking forward to it. I'm so sick of choking on every sip of anything I try to take in.
So, that's where I'm at. If anyone can give me any advice on what I'm looking at with this Trach, I'd greatly appreciated it.
Also if I can help anyone with anything, don't hesitate to ask. 4 years experience with this rechted disease , trust me, I've been through it all.
 
You didn't say if you plan to use a vent with your trach, but since you are reliant on BiPAP 24/7 I will assume the answer is yes. I think you will find a vent more comfortable and effective than the BiPAP at this point. My website discusses the pros and cons of venting, necessary considerations before deciding, planning, and the reality of caring for a trach. It is far easier than you have probably heard. You will love the convenience of the feeding tube! Check it out here
Vents and Trachs
 
Hi, all the best for your Op, please let us know how you go.
Love Gem
 
Good luck. Keep us posted
 
I have no regrets on getting the feeding tube. It was sore for a few weeks but no problems otherwise.
 
Thanks for sharing your story. Good luck with your surgery- hope it improves the quality of life for you.
 
good luck with surgery. you already helped me just by posting. thanks chally
 
I hope and pray all goes well with your surgery, and you will be very happy with the results. Please let us know how it goes. Thinking of you.
Charlene
 
Thinking of you and hoping surgery went well. Please let us know!
 
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