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#46325 09-18-2005 07:35 PM
Joined: Jul 2005
Posts: 28
dee Offline
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Jul 2005
Posts: 28
My Moms 1st g-tube/peg tube came out within 2=3 weeks of getting it. Due to her getting 100% of food via tube, it was immediatly replaced even tho she had liquid earlier that day.

They didn't use the same site, made another incision right beside it. (which terrified me due to risk of infection).

I was also told it wasn't a balloon on the inside, instead the doc said it was a round ring. The booklet we were given had said balloon!? I'm sooo protective of it now that I'm probably ridiculous.

Dee


Caretaker of Mom with Unresectable stage IV SCCHN, T1-3,T4..No,N1,N2-3. IMRT daily treatment starting 8/24/05. Erbitux every week starting 8/10/05 and Cisplantin every 3 weeks times 3. Diagnoised 7/5/05 -passed and in peace now on 10/1/05
#46326 09-22-2005 01:57 PM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
After my mother's came out the third time we received a call from a social worker asking if there was anything going on at home or if we needed a referral to a psychiatrist. eek

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#46327 09-28-2005 11:02 PM
Joined: Sep 2005
Posts: 35
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Sep 2005
Posts: 35
Hi all,
I have been on peg feed for well over four years now and am totally dependent on it as I do not have a food passage ( it closed due to non usage because of a problem that occured due to an overdose of radiation). The biggest problem the people in India face is that all peg tubes have to be imported into the country and they dont come cheap. An ordinary person going through this trauma will never be able to afford one. The place I live in - New Delhi, the capital - we have just one company that imports and stocks the peg tubes and just imagine what would happen should the peg "pop" out and the size one is using is not available.

The peg tube in my case has popped out twice in the last four years plus and both because the baloon inside deflated for unknown reasons. Each time I was far away from the hospital where I was being treated and then the problem of getting the tube. I was lucky that in both instances the tubes were available but each time I had to wait almost seven to eight hours for its delivery! I recall the last time it happened - about two month ago - I was at work and suddenly I felt my vest all wet. I thought the peg must have opened out and the feed had leaked out - but when I picked up my shirt and vest and saw the entire vest red in colour and the peg just there - out and deflated. Blood was freely flowing out and I did not have too many options but to call the importer and then call my doctor who too was not available for a good five hours as he was in an emergency. I grabbed the end of the peg and as there was nothing I could do - just removed it and held on to my wound with a towel. I then called my wife - who rushed to pick up the tube rather then wait for its delivery and I drove back home - one hand on the steering and the other alternating between holding the wound an changing gears!!
I reached the hospital in about five hours of the peg having popped out and the doctor walked in and put in the new one with the minimum of fuss. I really do not know how to explain my feelings on that day or the earlier incident - but to be very honest - I was not scared or worried for even a moment - though everyone around me thought the world was coming to an end. I know it sounds unbelievable - but honest to God it is the truth.

Wow - that took some writing!!!
_______________________________________________
Ananth - 47 years old - VP of a German multinational, diagnosed with cancer of the larynx in its final ( 4th ) stage April 2000. Refused surgery and opted for radiation and chemo and kept the surgery option as a second line of defence. I am today cancer free - January 2004- and still have my voice with my larynx both that were totally fixed now moving in unison. The only side effect that remains is the peg and a temprory trachostomy and both are expected to be removed over the next two months.


"FIGHT AND YOU SHALL OVERCOME"
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