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Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Medical Mulligan indeed . Now, I�m not a golfer, but �some of my best friends are� so I feel justified in evoking this concept of a �do-over shot� . That is exactly what happened to me today, April 2, 2009 It�s a good thing it wasn�t yesterday because it would have seemed to good to be true, just an elaborate April Fool�s prank in the Ashton Kutchner �punked� style. What the heck am I talking about: NEW PEG TUBE RIGHT SIZE
Plus the entire operation experience was done over the right way in the very same place just with different players including Bev.

As you know from prior bitter email postings: The 12 FR PEG tube had been vexing me because of the operation terrible treatment and side effects of being too small. After clogging several times, or sporadically seizing up, the damn thing LEAKS at the compression/screw , spewing forth a dark stain on my white insulated undershirt and shirt. I relented and Bev fought thru voice mail and staff to get me a 7am appointment on Thursday morning at the scene of the crime: Georgetown Interventional Radiology (IR) . It looks like it will be nightmare again as I go to the reception desk and get scolded that I need to step back to this imaginary line for �patient confidentiality� where I can hear everything crystal clear anyway. Oh boy, here we go again, but NO. Both the receptionist and I are glad I need to Go across the hallway to a nicer waiting room. Here IR has filled my chart out for me, culling it from computer records, and take us into the examining room at 7:15 and then go to see what doctor will treat me. Showing uncommon good sense, the clown Karun Sharum who botched this back on March 6 is there but makes it a point to be invisible and avoid me entirely. The staff is humoring me by letting me refuse to take off my clothes and get into a gown. I unbutton the two shirts so there is clear access to the PEG, damn if I am going to be pushed around anymore. Even better, they fill out a red allergy warning tag for me with �Bullshit� on it. (But ask I not wear it there � I will save it for my PETSCAN . ) Contrast that with me being left for three hours alone and ignored in the hallway on a stretcher my first visit to IR.

We�re not done yet reliving the nightmare but this time as a dream. Who comes in to treat me but the sincere earnest stereotype of a young upper class Doctor, -the same as Dr. Carter, Noah Wylies� character on ER which by synchronicity is having its Series Finale ending the show after 15 years and he�s doing a guest shot.. He had me at �Hi, I�m Jeff, your doctor and here are copies of your barium flourscope to keep that show the before and after of your March 6 surgery Yes the amazing Doctor who spends a full hour, answering all my questions, exploring options, and treating me like a person and listening to me. Turns out he is indeed the TV version in real life. When I mentioned that I worked at IRS, he admits his taxes are complicated especially with Grandfather�s Trust Fund which is administered by a secretive bank under instructions from the will not to disclose the full principal of the Trust until he is 40 It gets better and more unreal: he was leaving Georgetown Hospital because after transferring to IR from General Surgery, He had wanted exciting work but he had only gotten �scut work�.Tthen he had a rare brain hemotoma and serious complications and the IR basically saved his life. So he�s staying and trying to be the doctor he wanted as a patient. He tells how he modifies procedures to account for the lack of followup care that Medicare won�t pay for with their elderly patients. And being assigned the cases where nobody is going to get paid, because the patient is uninsured, because they need the help. He diagnoses the problem a defective Tube. Which needs to be replaced, so why not with the bigger 14 FR I wanted.? He agrees and we then discuss the super big 20 FR, but while he prefers it and it is the best, it�s a bitch to put in right in my case with a healed 12 FR hole without more cutting. So back to the 14 FR and I take off my shirts and put on the gown, leaving on my pants, underpants, socks and Keen sneakers. They even agree to that! Wheeled into surgery immediately, right past the exact same spot where I lay for those three hours.!
Plenty of Fenatyl this time, so no real pain. Before I know it, the operation is over, and the surgeon and Super Doc Jeff are scrubbing out. Then to top it off, before I am wheeled out of surgery, the door opens and the Patient Advocate of the entire hospital whom I have been emailing constant complaints comes in and asks if I want anything.
I ask her to get Bev and bring in my blue bag that I had with the feeding bag and y extender tube to make sure everything fits. She does and Doc Jeff returns to actually put it together and take it apart for me to show how much easier this set up is than before.
I get whished to the ICU recovery where I am the most alert patient, Oh, I almost forgot, Bev got a new prescription for pain and took it to the pharmacy at the hospital but Blue Cross Blue Shield wouldn�t approve it until tomorrow since I just had one filled.
So they give us a new different one for a different pain pill so I can fill that instead.
Full service. I get some immediate morpheine and pain drip in ICU where I get completely dressed in street clothes and the released to general recovery . There everybody is still in gowns and stuck for the �mandatory two hour watch�, I�m out of there in 20 minutes after getting IV removed and discharge paperwork filled out. No need for transport or wheelchair, I get up and walk out the door with Bev over to the garage and to our car. HOME and the tube works perfectly at dinner, much faster. I should reclaim a full HOUR a day (ten minutes a can) or 20 minutes each at breakfast. Lunch and dinner. Plus big finale, I went back to the gym yesterday and lifted weights again � felt Great. Okay, time to get ready for ER finale.
The best revenge is living well or else getting a medical mulligan.
Peace and Love


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
Patient Advocate (1000+ posts)
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"OCF across the pond"
Patient Advocate (1000+ posts)

Joined: Feb 2007
Posts: 1,940
Charm.... A WORD OF WARNING if you disclose anything that happens on ER i will have to shoot you.We are few weeks behind you here and i dont want to know,as in most things anticipation is three parts of the pleasure.

Good news on the peg as we say here in limey land,the squeeky wheel gets the most oil.

love liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Mums the word Liz on ER. As more posters here decide I'm not their cup of tea, (I don't resolve conflict constructively, as my skill set is more to crush opposition), I don't want to alienate those who tolerate my style for my amusement value.
I confess to an alpha male satisfaction in improving bureaucratic behemoths behavior. I am working with Georgetown Patient advocate to get in place paperwork requirements to force compliance with best patient practices. so I won't spoil your surprises but do anticipate appearances from old favorites.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
Patient Advocate (1000+ posts)
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"OCF across the pond"
Patient Advocate (1000+ posts)

Joined: Feb 2007
Posts: 1,940
Thanks charm

i have already sobbed my heart out at the episode with Mark Green and enjoyed seeing alex kingston and of course big jerry,and am waiting with bated breath for the george clooney episode.Says something about me eh?

NO...DON'T SAY IT.LOL


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Joined: Jul 2006
Posts: 388
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Jul 2006
Posts: 388
"Squeeky wheel"? I think Charm was more like a bullhorn! Good for you, Charm, and keep those real life experiences coming. We can all learn to be more assertive from you. Wishing you the best with your new PEG! Warmly, JaneP smile


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
Joined: Nov 2007
Posts: 681
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Nov 2007
Posts: 681
All those years of experience in the red tape jungle have paid off. Good for you.


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 5,260
Charm, all I can say is "YOU DA MAN" LOL Give em hell Charley..


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Charm,

Liz's WARNING only reminded me of her pet jumping up and down on that trampoline so take heed, she has some big, heavy and potentially nasty friends.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
Patient Advocate (1000+ posts)
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"OCF across the pond"
Patient Advocate (1000+ posts)

Joined: Feb 2007
Posts: 1,940
I thought you counted as one of my frinds David.......LMAO


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
I am I just thought I would reinforce your warning. Now if I wasn't one of your friends I would watch the last episode and blab it to you.......hummmm


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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