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#201777 02-14-2023 05:37 PM
Joined: Sep 2006
Posts: 493
Stoj Offline OP
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Sep 2006
Posts: 493
I'm 16+ years post treatment. I have had some swallowing issues that have been getting progressively worse. I have had some tests done, and they show that I am aspirating when I swallow. This all came about when I was in the hospital for a hernia repair, and while recovering, I aspirated and was diagnosed with pneumonia. Given my RT, pneumonia history and swallow study, I ended up having a GJ tube placed and am currently npo except for small sips of water. Does anyone here have any experience with McNeill Dysphagia Therapy Program? Thoughts?

Tim

Last edited by Stoj; 02-14-2023 05:41 PM. Reason: Grammar

Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
Joined: Jun 2021
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Hi Tim, I have a similar story to yours, except I got the tube at 12 years! Not uncommon, I have been told about 30% of the folks get it due to damage from radiation. So I have been a "tubie" for 18 months, I am actually better, I had gotten aspirated Pneumonia several tme and the docs said if I kept up eating I might have a "shortened life" I am still very active and swim/run/bike..hike, just takes a little getting use to. Brian Hill, the founder of the forum is in a similar place. Read some of his posts. My doctors are at UCLA, they are VERY good


steve
72 yo
SCC 2009
Radiation/Chemo, clear 2010
Active triathlete
NPO and bad voice after 12 years
But doing great
1 member likes this: Stoj
Joined: Sep 2006
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"OCF Canuck"
Patient Advocate (1000+ posts)
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"OCF Canuck"
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Joined: Sep 2006
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Awesome for you. I have known Brian for years and he was a tremendous help to me when I got my tube in Jan /22.

I am like you - I am not as hard core as you as Brian. I use my formula in the morning with chocolate free mixed in. That is my lazy - newspaper - Facebook time so my gravity feed is set to slow drip.

Other meals are blender meals. I enjoy the food the family that the food drinks. Eg. Tonight I blended ham, scalloped potatoes, protein powder, mixed vegetables and formula. I always strain. Always. I am often surprised which mixture has enough sediment to block the mesh screen and slow/stop the draining. I am very fortunate that I do t have food envy. I was overweight for 67 years and I have an excellent sense of smell and memory so I don’t feel I am missing something.

I am good with going out for dinners and others eating - providing I can have a cocktail or two while they eat. I am a social drinker only so for me having a drink or three makes me feel it is an occasion for me too. I might have 4 drinks a month so I am not near the AA MEMBERSHIP. For me - it is a psychological thing - where I have something to look forward to same as those selecting their menu items.

Like you - I do not want aspiration pneumonia again. I am also carefully sbout all the cleaning that needs to be done. GOID Lord. The amount of time needed to keep extensions and syringes, etc pristine is a lot of work. In canada unless you are below a certain income threshold then you are not covered for delivered no cost supplies. My work medical insurers are assholes and cover very little of my supplies. They will cover G tubes and extensions but nothing else. We both know that is a lot. I therefore work st extending the life of feeding bags, syringes, etc.

Great to talk to you.

Please write whenever you like.

Donna.

(A long time OCF MEMBER - PANDORA is significant of hope.


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
1 member likes this: Stoj

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