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Moyamoya.com Forum › NON Moyamoya Related Topics › Daily Jibber Jabber › Flying out to Stanford, 1st surgery on Fri 8/25

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Flying out to Stanford, 1st surgery on Fri 8/25 (Read 13231 times)

lotsofkids

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Flying out to Stanford, 1st surgery on Fri 8/25
Aug 22^nd, 2006 at 1:18am

Hi guys it is 1:00 am here and I just finished packing my suitcase. I am flying out tomorrow (Tuesday) afternoon for California.

Weds and Thurs they have me busy with more diagnostics and of course....meet and greet the doctors (Dr Steinburg, the anethesia doc, cardiology doc etc) I will do the ct zenon, another MRI and an echocardiogram.

we are going to do the direct MCA-STA, with a combo of indirect also. (sort of the upsized version) LOL
1st surgery is scheduled for Friday 8/25/06, then the other side is on Tuesday 8/29/06.

My husband will be with me for both surgeries, but then he must return on 8/31.....at which time my sister will fly out from Boston to stay with me for the duration of my recoup. I have booked a return flight on 9/9/06.

Jill called today....just to wish me a pleasant flight. And Trina (a mm board member and former Steinburg patient has been emailing me all sorts of great tips and advises. Thanks .....I now already know where to find internet access in the hospital! You guys are terrific.

having wedding day jitters...but hoping the recoup/honeymoon period will be smooth!

smiles....Diane : )

Hmmm....seems I'm kinda "special" LOL

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Chelsie Experienced Poster Offline Posts: 127 Columbus, USA, usa, 418, 135, OH, Ohio Gender:	Re: Flying out to Stanford, 1st surgery on Fri 8/2 Reply #1 - Aug 22^nd, 2006 at 8:02am Diane- You are in the best of hands and I'm sure everything will go smoothly for you. For me, the waiting was the hardest part. Once you have the surgery and can concentrate on recovering, hopefully you will be able to relax. We'll be thinking of you!! Hugs~Chelsie
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Mar

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Re: Flying out to Stanford, 1st surgery on Fri 8/2
Reply #2 - Aug 22^nd, 2006 at 8:55am

Hi Diane,

If I were in your shoes, there is no where on earth I'd rather be then with Dr. Steinberg and staff. They're the best! You're in great hands.

Your MM family will be there with you through it all in spirit, and keeping you in our thoughts and prayers. Smiley

Keep us posted. Have a safe flight.

Mar

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STrantas MM.com Benefactor Offline MoyaMoya Survivor Since 2003 Posts: 1154 Philadelphia, USA, usa, 490, 122, PA, Pennsylvania Gender:	Re: Flying out to Stanford, 1st surgery on Fri 8/2 Reply #3 - Aug 22^nd, 2006 at 9:17am Best of luck, Diane! We will certainly be thinking of you as you go through your surgeries! Sending wishes for a speedy recovery! -Shari
Back to top	A smile is contagious...start an epidemic! Dr. Scott did my surgeries - 12/29/03 and 1/5/04 IP Logged

Lore

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Delaware, USA, usa, 419, 133, OH, Ohio
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Re: Flying out to Stanford, 1st surgery on Fri 8/2
Reply #4 - Aug 22^nd, 2006 at 12:03pm

Hi Diane,

Another Ohioan turned Californian. LOL

So you're off to the Moya Moya Palace to be treated by the King (Dr. Steinberg) and Queen (Teresa) of MoyaMoya. You are in the hands of a skilled moyamoya surgeon (the best in my book) and skilled moyamoya staff. I know you will do fine with your sense of humor and positive outlook and I look forward to hearing all about the honeymoon when you return from Stanford.

I will keep you and your family in my thoughts and prayers.

Hugs,

Lore

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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gotchlorine Old-Time Poster Offline Our daughter, Tara, lives with MM Posts: 776 San Jose, USA, usa, 24, 158, CA, California Gender:	Re: Flying out to Stanford, 1st surgery on Fri 8/2 Reply #5 - Aug 22^nd, 2006 at 12:51pm Love the analogy, Lore! I think that makes me court jester . . . . . Diane, can't wait to meet you! The king and queen will take great care of you! Big hugs and safe travels, Jill
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Lore MM.com Benefactor Offline My brother Kevin (Cubbie) has Moyamoya Posts: 819 Delaware, USA, usa, 419, 133, OH, Ohio Gender:	Re: Flying out to Stanford, 1st surgery on Fri 8/2 Reply #6 - Aug 22^nd, 2006 at 1:38pm Jill, The jester??? NO!......The Princess!! AND....Stanford Moya Moya Ambassador! Follow the yellow brick road! LOL Hugs, Lore
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lotsofkids

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Re: Flying out to Stanford, 1st surgery on Fri 8/2
Reply #7 - Aug 24^th, 2006 at 2:18am

Hi guys,

I am here and spent a busy day (wednesday) with my first familiar face meeting me was Jill! thanks for the hug and warm welcome Jill...just lovely to meet you.

Then the super Joli took my workup info prior to meeting with the Guru....Dr Steinburg!

A professional consult with a twist.....he said both of my corotid arteries are fully (100%) blocked!!!!

I am totally running on my collaterals....but luckily I have extensive collaterals established!

Can't wait to meet everyone else over the coming days.

thanks guys for all the nice well wishes and antics. It sort of feels like I am with a special group and we already know each other. Kinda wierd but calming. I am heading back tomorrow for another day of tests, starting with a ct zenon test, an cardiac echo...and meeting with the cardiology docs.

The weather is lovely....flowers blooming all around....very Californian. Great eating establishments....I will probably go back a little heavier (the steroids are giving me a strong appetite to boot) 2007 will be the year to drop a few lbs when I am all recouped and feeling great....right?
2006 is meant for focusing on getting better and not to stress about anything.

BTW: we negotiated a great rate at the Creekside Inn....it is one of the hotels on the list here on this site....it has an informative website to look at it if anyone is interested. It is usually starts at $180 and up for 2 queens.....the sales manager gave me $105 per night for my stay. 3 miles from Stanford, free transportation up to 5 mile radius, cont breakfast, free wireless internet in room and on site, pool, wt room, etc... and a lovely serene park-like setting.

Friday will be my 1st surgery day....so this could well be my last follow-up for a while....depends on how busy tomorrow gets. So for now.....keep my in your thoughts and know I am in good hands both here at Stanford and in the Higher Power watching over!

big smiles....diane : )

Hmmm....seems I'm kinda "special" LOL

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Nancy_N. Old-Time Poster Offline My daughter Mandy Has Moyamoya Posts: 664 Jasper, USA, usa, 436, 230, GA, Georgia Gender:	Re: Flying out to Stanford, 1st surgery on Fri 8/2 Reply #8 - Aug 24^th, 2006 at 7:03am Diane, You are totally in my thoughts and prayers, the Stanford gang will take great care of you as they they did Mandy my daughter. Take Care. Nancy
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lotsofkids

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Re: Flying out to Stanford, 1st surgery on Fri 8/2
Reply #9 - Aug 25^th, 2006 at 12:59am

thanks guys....your positive thoughts and warm wishes are so very much appreciated.

Today was another exhausting day from 7am to 3pm.

did the xenon and felt a lot of dizzyness for a couple hours after.....then an echo (because of my recent pericarditis/percardectomy)...then a chest x ray and a cardiology consult. Got the final green light and everything is a go.

I am first in the OR tomorrow.....scheduled for 7:30am -
2:00pm. We need to show up at 5:30 for pre-op. (yuck)

Our dear Jill, talked to me on my cell phone and insisted that she will show up and be with me at that early morning time! That was so sweet of you Jill. I told her that I will see her smiling face when I wake up and all is over. This is the team that Stanford has! I

am soooo tired right now....no time to think about what tomorrow is all about.....I just prepared my hospital bag and separated my things here in the hotel and I will call it a night over here.

I assume that I will be out of it for a few days....so I will ask Jill to update you on how the surgery went....of course we all know it'll be a walk in the park....(sort of after being hit by a 2 x 4 first... LOL) but what's a little bump on the head between good friends?

(just venting with odd humor...sorry)

Hey....you all take care and thank you again for jumping in and bring those good vibes!

big smiles and hugs......diane : )

Hmmm....seems I'm kinda "special" LOL

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Lore MM.com Benefactor Offline My brother Kevin (Cubbie) has Moyamoya Posts: 819 Delaware, USA, usa, 419, 133, OH, Ohio Gender:	Re: Flying out to Stanford, 1st surgery on Fri 8/2 Reply #10 - Aug 25^th, 2006 at 9:11pm Diane, Sounds like you got to the wizard just in time! OK Jill, it's 9:00 pm Ohio time and 6:00 pm California time. I'm anxiously waiting to hear how my fellow Ohioan (Diane) is doing. Keep me posted! Hugs to all, Lore
Back to top	"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson IP Logged

gotchlorine

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Our daughter, Tara, lives
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Re: Flying out to Stanford, 1st surgery on Fri 8/2
Reply #11 - Aug 25^th, 2006 at 10:59pm

Hey guys,

Sorry it's so late in the day . . . I just arrived home from work.

Diane looks FANTASTIC Smiley

!!! Even knowing that every patient is different, I was still amazed at her chattiness. Her eyes were clear and bright, and the smile on her face was enough to light up any room. According to Diane's husband, Dr. Steinberg was extremely pleased with how the day went. Definitely a great report!

I'm sure she'll be posting as soon as she is able to, but please keep Diane in your thoughts and prayers as she starts her recovery and gears up for her second surgery on Tuesday - I know she'll appreciate it!

Hugs to y'all,
Jill

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MrsDeej YaBB Administrator Offline My life is what I make it....and it's beautiful! Posts: 126 Wichita, KS Gender:	Re: Flying out to Stanford, 1st surgery on Fri 8/2 Reply #12 - Aug 26^th, 2006 at 12:44am We're pulling for you Diane!! Keep your chin up. I know you will do great! Much love from DJ and I!!! God Bless, Steph
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Lore

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My brother Kevin (Cubbie)
has Moyamoya

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Re: Flying out to Stanford, 1st surgery on Fri 8/2
Reply #13 - Aug 26^th, 2006 at 8:03pm

Thanks Jill for the great post surgery news on Diane. I'm so glad to hear Diane is bright eyed and chipper.

Diane,

Get all the rest you can for your Tuesday debut. Keep your positive outlook and sense of humor. Blood flow does wonders for the brain! I have been down your path with my brother and can relate to what you are experieincing. I will continue to keep you in my thoughts and prayers as you begin your recovery from round one and begin round two. As Steph mentioned, we are all pulling for you and have great faith you will do fine. Stay strong and know that we are here for you every step of the way.

I will be watching for your post when you are able to do so.

OH...IO! Go Bucks!! LOL!

Hugs,

Lore

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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itsme

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Re: Flying out to Stanford, 1st surgery on Fri 8/2
Reply #14 - Aug 27^th, 2006 at 3:23pm

Hi Diane,

Whew, thanks to JILL-SAN, we know you are recovering now.
Yes, all this sounds like you're in THE TWILIGHT ZONE,
but hey "it was nothin" right????
Thanks to Dr.Stienberg and his staff, DJ and all what he's done to support this MM family and not to mention all the FRIENDS we made here....

This "MM Tapestry" is none the less "price less."

We pray for your quick recovery and keep us posted.

Best,
itsme

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lotsofkids

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Re: Flying out to Stanford, 1st surgery on Fri 8/2
Reply #15 - Aug 27^th, 2006 at 9:21pm

Ok guys...,.I followed the yellow brick road and found internet in Emerald City. (3rd floor waiting area)

Post surgery I was really feeling terrific with the exception of a nasty headache (I surprised myself at how good I felt) but the following morning was hit with headache and nausea....and that was well.....blah.

I have a decent shiner on my right eye which is my badge of honor and my face is as puffy as a pumkin. I figure I'll have a matching shiner from the next surgery...so all will be balanced!

Today, as you can see I am mobile and feeling better. This is the calm before the storm....as I have little time to feel better till I go under again.

They have me on the cardiac ward instead of the neuro ward....because I went into Atrial Fibulation in the ICU for about 7-8 hrs....they tweaked my meds and got me into a good rythym and I haven't had any more irregular heart beats.

Joann came in both yesterday and today to do her doppler magic on me (Trina...she loves you and was happy to hear that you sent your hugs to her)

Dr Steinburg said the parameters of blood flow is on a scale of 1 -20. I was a negative 3 and post surgery am happy to report I am now a positive 18 !!!! how's that for a great report! One successful surgery down....and one more to go! I am hoping to go back to Cleveland with a higher IQ !!!

The food is decent....I am a professional hospital food critic....so far Summa City Hospital of Akron wins in the menu category!

The pj's here win the comfort category....I was told they were done by a famous designer (forgot her name) and they are soft jersey cotton. A lovely light mint green theme.

Ok .... so you have all the inside info on Stanford for now....and I'll try to trek the yellow brick road one more time before the next surgery.

Smiles to all.......diane : )

Hmmm....seems I'm kinda "special" LOL

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lotsofkids MM.com Benefactor Offline Moyamoya...Oh boya boya! Posts: 333 Akron, USA, usa, 421, 123, OH, Ohio Gender:	Re: Flying out to Stanford, 1st surgery on Fri 8/2 Reply #16 - Aug 27^th, 2006 at 9:24pm Hey KatJim....you must be here in the hospital or at least the last one to log into the MM site, as my post was posted under your chat name! I logged you out and then reposted under mine. Hmmmm.....technology is unforgiving if you don't log out! Glad it wasn't your bank account! smiles....diane : )
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STrantas MM.com Benefactor Offline MoyaMoya Survivor Since 2003 Posts: 1154 Philadelphia, USA, usa, 490, 122, PA, Pennsylvania Gender:	Re: Flying out to Stanford, 1st surgery on Fri 8/2 Reply #17 - Aug 28^th, 2006 at 9:09am Diane - I have big smiles ( ; ; ;) reading your posts! You have a great sense of humor - glad you still have it!!! It's great that you are doing so well after surgery! Keep up the good work....we'll be thinking of you as you go through your second round! Hugs from Philly! -Shari
Back to top	« Last Edit: Aug 28^th, 2006 at 9:09am by STrantas » A smile is contagious...start an epidemic! Dr. Scott did my surgeries - 12/29/03 and 1/5/04 IP Logged

Janko

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Re: Flying out to Stanford, 1st surgery on Fri 8/2
Reply #18 - Aug 29^th, 2006 at 8:29pm

Hi Diane,

I'm so happy all went well and you are feeling good. I was stalking the halls at 4:00 a.m. once I was mobile. I got a few scoldings for walking around by myself Smiley

. (I couldn't help it, I was too bored and couldn't watch TV without my glasses.)

Well, I'll be back at Stanford in October for my 6 month follow-up. I have all my appointments scheduled. The only thing I'm not looking forward to is the angiogram.

Keep in touch!! Rest as much as you can!! Keep Strong!!

Aloha Smiley

Jan

Everything is not just black and white. Open your eyes, see what the world has to offer....

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lotsofkids

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Re: Flying out to Stanford, 1st surgery on Fri 8/2
Reply #19 - Aug 31^st, 2006 at 1:50pm

Aloha Jan,

You are just a wee bit ahead in the process...how are you feeling these days! Hopefully with a renewed intelligence and a gorgeous California look!

I finished the 2nd surgery on Tuesday and it went as uneventful as the first....I went from a negative13 on the left side to super blood flow!

Still dealing with the headaches, earache, swollen face and black eyes......I still have the Mike Tyson look going on...but will hopefully exchange that for the California look!

Hubby left today for Ohio....I will miss him a lot. My sister will fly in from Boston and arrive this evening to take his place. I will probably have a couple more days in the hospital before being released to the hotel.

Although this is a very intimidating process....it has been full of wonderful support and staff. I cannot say enough of how pleasant it has all been.

And thanks SHARI....my Philli neighbor!

warm wishes to all......diane

« Last Edit: Aug 31^st, 2006 at 1:52pm by lotsofkids »

Hmmm....seems I'm kinda "special" LOL

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Chelsie Experienced Poster Offline Posts: 127 Columbus, USA, usa, 418, 135, OH, Ohio Gender:	Re: Flying out to Stanford, 1st surgery on Fri 8/2 Reply #20 - Aug 31^st, 2006 at 1:58pm Hi Diane!! So wonderful to hear you are doing well! I know you will miss your hubby!! It is a miserable, rainy day here in Ohio so hopefully you have some sun in Cali! Keep up the strength and good spirits!! Hugs from Columbus~Chelsie
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Janko

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other!!

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Re: Flying out to Stanford, 1st surgery on Fri 8/2
Reply #21 - Aug 31^st, 2006 at 2:00pm

Hi Diane,

I had my surgery in April. My first was on 4/19 and second was on 4/26. I didn't have a really dark black eye, just a bit of a shiner. Unfortunately they had me on regular (adult) aspirin and that thinned my blood too much that I started bruising really bad. After they told me to go on baby aspirin, the bruising started to go away. It looked like someone to a bat to my neck and chest.

All in all, everything was a success. Although I'm still having trouble sleeping at times, I haven't had any headaches since the surgery (yahoo!!).

Keep in touch!!

Aloha,
Jan

Everything is not just black and white. Open your eyes, see what the world has to offer....

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tiomasai

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Re: Flying out to Stanford, 1st surgery on Fri 8/2
Reply #22 - Aug 31^st, 2006 at 8:24pm

Diane!

So sorry for the late reply but I'm so glad to hear that your surgeries went well, I knew they would.

I'm sorry your hubby has gone back, but I'm sure he's still there in spirit. The hardest part is over now. HEY, maybe NOW would be the time to go check out DR. DODD!! We promise not to tell your husband -- Jill, perhaps you could set up a 'chance' meeting? No moya moya patient should leave Stanford without meeting our own resident McDreamy.

Let us know when you return to Ohio! Hopefully I'll see you in November when I'm home!

Trina

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Lore

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Re: Flying out to Stanford, 1st surgery on Fri 8/2
Reply #23 - Aug 31^st, 2006 at 10:56pm

Hi Diane,

I too am sorry for the late reply. So glad to hear you have completed your surgeries. It will get better with time.

Sorry to hear your husband had to come back to Ohio. It has gotten cool here. Went from hot and humid and in the 80's and 90's to cool, rain and 68! I hope this is not an indication the snow will soon fly.

It's nice your sister can be with you during your recovery. If you feel up to it there is always the Stanford Shopping Mall or you can drink your way up and down the Napa Valley. LOL!!

As for the black eyes, there's always White-out. LOL!!

If you see JoAnn the doppler lady, tell her Kevin and Lore said Hi! She is so sweet. Kevin thinks the world of JoAnn.

As Trina mentioned, a Stanford stay is simply not complete without a Dr. Dodd encounter. You too can become a Dr. Dodd fan club member. He is a super doc and has a terrific demeaner and bedside manner. Perfect combo for a doc. The entire Stanford moya moya staff rock!

Keep us posted on your recovery.

Hugs,

Lore

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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lotsofkids

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Re: Flying out to Stanford, 1st surgery on Fri 8/2
Reply #24 - Sep 1^st, 2006 at 8:44am

You guys are too funny! And wow....a lot of Ohioians here!

Trina I sent your well wishes along to Joann and she...well....she just loves you! Also, a Phillipean male nurse was mentioning you in the ICU.....(you left a nice impression on him)
Joli and Theresa were remissing at how you had such a fast recovery....they couldn't keep you still (I figure it must have been the Dr Dodd syndrome/distraction...LOL)

Lore and Cubbie....I will pass on your hugs to Joann in the morning for you. She is such a bundle of energy....I love how she enters the room peaking her head around and with a sing-song (I'm here!)

I would never have believed that brain surgery could be so much fun!

I have been taking a handful of pictures....but I have yet to get Dr Steinburg.....he is in and out of the room so fast....it seems an afterthought....but I will get him eventually with my follow up or staple removal day.

In the am, they will do another MRI and CT xenon as my speach was a little garbled yesterday. They don't think it is stroke....mostly, just a little fluid and then it is expected to go away on it's own. My left side swelling was more significant than my right side. Just a couple of rounds with Mike Tyson.....to complete my look!

Oh and my blood flow on the left side prior to surgery, was a negative 13....that was a reverse blood flow and pretty serious at that. Now, I am a positive 53!

I originally thought the perimeters were only a scale of 1 -20 (but that WAS what he wanted for my RIGHT side......my dominent left side he wanted even higher blood flow.....so in both cases....they ARE where the doc wants them to be now....and I am a very happy camper with great flow!

My sister arrived and spent the last hour of visiting hrs here with me.....she has her doctorate in Pharmacology and answered a few questions here on the board last month.....(she actually joined the board a few days before me) she took a keen interest in my MM and time permitting might be able to help the board with meds questions some more.

And a follow-up to KatJim (Jimkat??) I heard you were in town mid-August for you wife's appointments. A good lesson here to log-out from public computers! That was too funny to have found your very computer and still active.

Well....I will sign out from the land of Oz...warm wishes to all.....Diane : )

Hmmm....seems I'm kinda "special" LOL

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