#50891 09-02-2004 04:33 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Jeepster,
Gosh, as many times as I used "Dan" it may be easier to change his name than to correct that many times! So sorry.
I had a "button" installed and the orginal PEG tube taken out. I enjoyed it more because I didn't have the contraption hanging out all the time. It has a valve in it so it doesn't leak and you can put one of two different tubes in when you need to use it. I had a small diameter one I used for meds and a larger one for feedings.
My voice was hardly intelligible off and on and even still everyone makes me repeat things several times. It is so frustrating at times.
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
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#50892 09-02-2004 04:36 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Jeepster,
Gosh, as many times as I used "Dan" it may be easier to change his name than to correct that many times! So sorry.
I had a "button" installed and the orginal PEG tube taken out. I enjoyed it more because I didn't have the contraption hanging out all the time. It has a valve in it so it doesn't leak and you can put one of two different tubes in when you need to use it. I had a small diameter one I used for meds and a larger one for feedings.
My voice was hardly intelligible off and on and even still everyone makes me repeat things several times. It is so frustrating at times.
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
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#50893 09-02-2004 11:16 PM | Joined: Dec 2003 Posts: 47 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2003 Posts: 47 | On our way to Madison this morning. Add to the voice, now he tells me he lost motion in his tongue 2 DAYS AGO! And the clear fluid he had been coughing up had some blood in it yesterday. We need prayers.
Karen
Caretaker/Longtime Girlfriend of Don. Dx 10/31/03 SCC Stage IV T2N3bMO right tonsil/tongue base. 35 IMRT w/8 Chemos,Biopsy 4/5/4 STILL pos. Radical rightside 4/12/4 Reoccurred late August 04 God took his hand from me November 23rd, 2004
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#50894 09-03-2004 03:55 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Karen
Special prayers for you, hang on in there girl
Sunshine... love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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