Author Topic: Debbi Bifulco Update  (Read 113643 times)

Jim Scott

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Re: Debbi Bifulco Update
« Reply #270 on: May 25, 2008, 01:28:55 pm »
Hi, Debbi:

It's good to know you're back home, even with the PICC line, which, while not fun, seems to be manageable.  Remember, this is only temporary.  Your good attitude and solid support system will certainly help see you through all this.  Not to worry about crying, Debbi.  You've earned a good cry.  Besides, It's an emotional release that no doubt did you a lot of good. Enjoy your rest and your visit and have a great Memorial Day holiday!  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Kaybo

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Re: Debbi Bifulco Update
« Reply #271 on: May 25, 2008, 07:50:25 pm »
Hey Debbi~
Just remember: "Don't PICC your friends noses!"   ;D 
My arm was very sore and i couldn't move it for about a week, but all that was b/c they hit a NERVE when they were inserting it!  It was like a lightening bolt shot all the way down my arm to my hand & then back.  Apparentely, it was then resting on the nerve so every time I moved my arm, I got little shocks.  The Dr. said that they could put it in again (NO, THANK YOU!) or I could just not move it -- I opted for that! 

You deserved a good cry!
SOOOOOO, glad to hear about your movement.  Believe me, I know about getting super excited about the tiniest of movements!! 
Glad you are home,
K  (wishing I would've had a lemon...)
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Debbi

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Re: Debbi Bifulco Update
« Reply #272 on: May 26, 2008, 10:31:35 am »
Happy Memorial Day, All!

Well, after sleeping most of the first day home from the hospital, I am now trying to get back to some sort of "normal."  Yesterday my friend Ellen came up from Princeton for a visit, which was great.  Unfortunately, I was totally exhausted after hours and had to lay down and sleep (I'm not much fun these days!). 

Last night, I wanted to try to tackle the IV by myself, so I got my sterile area all set up and set to work.  The hardest part is that the "nozzle) is located at the inside of my elbow on my right arm (and I am right handed), so I have to try to unscrew it using my left hand only.  I find that if I get it wedged between two fingers I can then use one other finger and the thumb to unscrew it.  Awkward, but it works.  Anyway, I did my morning IV all by myelf (oh, aren't I a Big Girl now!).

I am also becoming adept at wrapping my right arm in platic wrap and taping up the ends in order to shower.  Actually, I am sure I am quite a site - eye patched shut, arm wrapped up, big black and blue incision on my stomach....  wow, what a hottie.

This morning, I got Willie to drive with me to Lowe's (I drove, bleary eye and all) so that I could buy several flats of flowers to plant.  I picked out my flowers, and off we went.  Even made a hot-lap through the grocery story (talk about sensory overload - yikes!)  I spent about an hour outside planting - good for the soul.  It's a beautiful day, so perfect to dig in the dirt.

My eye is driving me crazy - seems that I have to put drops in at about every 10 minutes.  REally a nuisance - does everyone else with facial issues have the same challenge?  I'm freaked about driving more than 15 minutes, because my eye gets so scratchy.

So, for those who want to see the "lemon/hand grenade antibiotic dispenseer, here's the link to the photos:  (Dont' worry, nothing gross at all!)

http://i280.photobucket.com/albums/kk167/debifulco/525DebwiththeAntibioticLemon1.jpg

http://i280.photobucket.com/albums/kk167/debifulco/525theantibioticLemon.jpg

Picc'in my arm in NJ.... Debbi
« Last Edit: May 26, 2008, 10:33:27 am by Debbi »
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

nancyann

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Re: Debbi Bifulco Update
« Reply #273 on: May 26, 2008, 11:51:59 am »
Hi Debbie:  Listen, if your eye is drying out that frequently, you may want to try using lubricant once in awhile, or at least at nighttime, remember, you need to protect your cornea from drying out, this could cause a corneal ulcer - I use Refresh PM exclusively (of course my paralysis is chronic whereas yours is hopefully/probably temporary (my facial nerve was cut).  I also need to use the Niteye Bubble - it's a plastic oval shape bubble with adhesive all around it & I wear it every night for sleep (it'll add to your 'glam' look !); it works like a moisture chamber/greenhouse effect.

Okay,   continued healing my friend

Always good thoughts,  Nancy
« Last Edit: May 26, 2008, 12:03:16 pm by nancyann »
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

leapyrtwins

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Re: Debbi Bifulco Update
« Reply #274 on: May 26, 2008, 02:06:41 pm »
Debbi -

you never cease to amaze me!  Doing your IV all by yourself - incredible  :)

Also, cool pictures - the "lemon" looks quite interesting and very portable.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: Debbi Bifulco Update
« Reply #275 on: May 26, 2008, 02:09:49 pm »
Debbi:

Happy Memorial Day to you, too and thanks for the holiday update and the photo link.

You really seem to be coping and doing well with the PICC line and the other issues you're dealing with.  In a year from now, this will likely be just a memory but until then, keep your great sense of humor and determination to successfully work through this AN thing.

You're an example to many and we're all behind you; some of us with prayer and all of us with hope, virtual hugs and good vibes.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

wendysig

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Re: Debbi Bifulco Update
« Reply #276 on: May 26, 2008, 02:19:33 pm »
Hi Debbi -

I'm so glad to hear you're home and already sounding like your usual self.  It's like I've said about you before -- just can't keep a good woman down.  You look great, by the way!  I would never guess what you've been through from your picture.  The lemon/handgrenade thing looks interesting.  Do  you  have to carry it around or does it attach to a pole?  Obviously, I have no idea of what I'm looking at.  Sending lots of good healing thoughts your way!!!

Best wishes,

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

sgerrard

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Re: Debbi Bifulco Update
« Reply #277 on: May 26, 2008, 02:33:51 pm »
Hi Debbi,

I agree with Wendy, you look great holding the lemon thing, despite all you have been through. Remarkably chipper, I would say.

Nancy and Daisy and others can give you the poop on the eye thing; All I know, from Dr. Eric Steele at our local ANA meeting, is that moisturizing the eye is very important. For daytime, he recommended not using the drops that have preservatives, they can irritate the eye if you use them very much. For night time, eye goop is the way to go.

Have a good week.

Steve


8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Debbi

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Re: Debbi Bifulco Update
« Reply #278 on: May 26, 2008, 02:37:37 pm »
Hi All-

Nancy, thanks so much for the wisdom about dry-eye.  I am using a gel at night (sometimes Refresh PM, and other times something similar) and I also use it occasionally during the day.  Mostly I use the single use drops during the day as they are the only type that doesn't sting.  Probably the fact that my eye doesn't close all the way yet is contributing to the dry eye.  It is just very frustrating - and, also I do worry about letting it get too dry and impairing my vision.  Ugh.

Jan and Jim, thanks for your kind words.  The PICC isn't so bad, once I get the hang of getting the screw thingie working.  I have to "flush" the line before and after, and follow iwth a syringe of heparin, so it looks like I am prepping for some kind of surgiccal event each time.  The good thing is that the nursing company provided everything, including pre-loaded syringes, so it makes it very easy and fool proof (hm, well, I guess that remians to be seen!)  ;D

Wendy, thank you!  The lemon thing is a self-deflating device, so it doesn't need to be hung from a pole.  I actually just put it in a fanny pack while I am "plugged in" so I can walk around and do things.  The only thing I have to be watchful of is the long line that connects the lemon to the PICC - don't want to snag that baby on anything!  Each does takes about an hour, so I just have to make sure I am home at 8 AM and 8 PM.  When the dose is done, the lemon deflates almost completely and can be "unplugged" and thrown in the trash.

As a sorta-funny aside ... I have my own red hazardess material container now - for the syringes.  It's kind of creepy and cool at the same time!  Bet I'm the only person on the block with one of THOSE in my dining room!  Ha!

Well, at least I am compiling some funny stories that Willie and I can laugh about in our old age ...

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

lori67

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Re: Debbi Bifulco Update
« Reply #279 on: May 26, 2008, 04:15:58 pm »
Debbi -

Those red biohazard containers can really make a lovely center piece - try adding some greenery around it.

I had the same problem with my eye post-op. It got to the point where I was putting drops in every 10 - 15 minutes and had to use the night time goop during the day.  I'd recommend a good opthamologist - I went to an eye plastic surgeon.  I had my tear ducts cauterized and a lateral tarsorrhaphy and haven't had any pain or scratchiness since.  I don't use drops during the day at all.  I still use the goop at night, but at least I can see during the day.  If it feels scratchy, your cornea is probably scratched, so you should have it looked at before it gets worse.  Your doctor may have someone he recommends, or maybe he knows someone closer to you so you won't have to travel into the city.

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Kaybo

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Re: Debbi Bifulco Update
« Reply #280 on: May 26, 2008, 09:11:38 pm »
Debbi~
I was on the 8 and 8 schedule also but at night I had to do 2 different meds/bags.  I also had the red bio-bags - so pretty!  Loved it when we had to take them back in to the Dr.'s to dispose of them.  Felt kind of funny taking our trash to the Dr.!!!!   ;D

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Debbi

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Re: Debbi Bifulco Update
« Reply #281 on: May 27, 2008, 07:56:22 am »
Hhmm - love the centerpiece idea - now if only it were near Christmas I'd be right in style, just add a little greenery...

I am going to schedule a visit with an opthamologist just so that I know I am doing all the right things for my eye - good suggestion from several of you!

Had my first blood draw this morning - pretty easy since they just used the same line. 

Kay, I can't imagine having to add more to this regimen - at least I only have the vancomycin!

Well, I am  back to part time work today which feels good.  Since I set my own schedule with clients, it is very easy for me to set up my day so that I have ample time to rest.  As a coach, I find that the experiences I am going through personally really help me in terms of working with my clients and helping them to get past roadblocks.  Ah, so nice to have silver linings...

Debbi ... breathing in NJ...
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

cindyj

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Re: Debbi Bifulco Update
« Reply #282 on: May 27, 2008, 09:21:57 am »
Great that you're feeling up to doing some work already, wow!  But,  don't do too much, we mother-hens are watching...

Seems you're definitely back on the track to healing - hope it continues to go well for you now.  You need some nice normal days, I'm sure.

And thanks for all your continued detailed updates,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

calimama

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Re: Debbi Bifulco Update
« Reply #283 on: May 27, 2008, 10:20:39 am »
hey Debbi...

Good to hear to you are still moving forward and making progress despite some setbacks. You are a tough cookie. Thanks for keeping us in the loop.

I see you mentioned you are visiting and opthamologist... Was this recommended?

I actually have a long outstanding appt with mine (i see her every year since glaucoma runs in my family and mom got it in her late 30s!). My appt is booked for the 20th of June. I was thinking to cancel since I will only be a few weeks past surgery, but now i am thinking that maybe i should keep it since she might be helpful to assess any eye issues (early on). Thoughts??

hang in there... keep breathing... and smiling!

Trish
(less than a week to go!!!!!!!!!!!!!!!
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

leapyrtwins

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Re: Debbi Bifulco Update
« Reply #284 on: May 27, 2008, 10:30:48 am »
Debbi -

Congrats on being back to work part-time.  It's so nice to be able to get back to your regular routine post op.  Don't overdo it  :)

And Trish - less than a week to go.  Hang in there; waiting isn't always easy.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways