NIH stay

[Guest guest]

Hi (again!)

Usually the stay is 2 nights.

We arrived the day before... our appointment was 7:00am.

We went to the Childrens Inn... had a tour and went to our room.

It is a wonderful Inn with soooo much to do!

The next morning we walked over to NIH... (weather was nice!)... it took a

few hours to see Kastner and the fellows and residents. First we met with a

social worker... then the nurse... then we waited! Then we met with the head

fellow... waited and then with Kastner (who had ph's history MEMORIZED!

LOL) there were about 5 docs in the room. But I was comfortable. I know some

parents were overwhelmed so go prepared... With questions... etc...

We were finished sooner than most. Seemed to flow. If we knew how early we

would have been done I would have flown home that evening... But you really

do not know ... some parents were there until late in the afternoon so

schedule yourself to stay the night and head out in the morning. There are

shuttles to the 3 main airport from NIH and there are shuttles between the

Inn and NIH.

There is a huge shared kitchen... many kids live there for months and

sometimes over a year.... So it is very Mom and family friendly.

They also have lists for delivery.... so you can simply order in too.

Feel free to ask away.

I am off to bed soon... so I will answer tomorrow.

God Bless

Fran

[Guest guest]

Mike, Have you requested a copy of your records? I thought they sent them

automatically, they don't! I found that out about a month after I came home and

then it took a coupleof weeks.

They also weren't good communicating with my PCP, she waited almost 2 months. I

mentioned that to the PTN advovate when I spoke with her earlier this week and

she said it was a problem so I hope your PCP listens to you as well as mine does

to me!

My Endo made a copy of all the lab reports (34 pages) and two 5 page summary

letters. He said he could learn a lot by reviewing them and I encouraged him to

share with others at the local VA Hospital.

Sounds like we had very similar testing. They scheduled my DEXA scan for 9:30

the first morninng. That ment they couldn " t start Saline suppresssion until

after 10 and I didn't eat that day until after 6pm. Nurse Casey was not happy

and told Dr. Moraitis so!

Great experience!

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> Hello:

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> I posted a File in the " NIH Stories " folder with some of my thoughts and

obersvations on the two week stay here.

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> Mike

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[Guest guest]

If on a Mac check the paper clip in the Mail menu. If on a PC GET A MAC. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jul 27, 2012, at 22:33, ww_engineer <mfaeth01@...> wrote:

If someone can tell me how to attach a file to my post I'll send what I have to date for coments on the layout.

Mike

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> > > Hello:

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> > > I posted a File in the "NIH Stories" folder with some of my thoughts and obersvations on the two week stay here.

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[Guest guest]

Prob better for you to do that. Across top day,time, what happened this day, wt, systolic, diastolic, heart rate, urine volume, urine Na K creat, Na K intake, blood Na K creat, renin, also, cortisol then other tests done on more than one day. And even a comments column. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jul 27, 2012, at 23:05, <jclark24p@...> wrote:

It took them two months to wrap it up, how long would it take them to transfer it all to a spreadsheet? These are all full pages from their computer.

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> > > Hello:

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> > > I posted a File in the "NIH Stories" folder with some of my thoughts and obersvations on the two week stay here.

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[Guest guest]

Probably not going to happen if I have to do it. I'm not well versed in

excel and am too busy looking forward to spend time looking backward.

My copy of excel has limited capability and I'm not really sure of the

value of the info unless you know what was going at the time.

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> > > > > Hello:

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> > > > > I posted a File in the " NIH Stories " folder with some of my

thoughts and obersvations on the two week stay here.

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> > > > > Mike

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[Guest guest]

If NIH has a standard protocol then this should be fairly easy to do but maybe you can send me what you have and I can work on getting it into a common format.CE Grim MDOn Jul 28, 2012, at 9:59 PM, wrote:

Probably not going to happen if I have to do it. I'm not well versed in

excel and am too busy looking forward to spend time looking backward.

My copy of excel has limited capability and I'm not really sure of the

value of the info unless you know what was going at the time.

> > > > >

> > > > > Hello:

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> > > > > I posted a File in the "NIH Stories" folder with some of my

thoughts and obersvations on the two week stay here.

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> > > > > Mike

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[Guest guest]

If one uses the gropp site to post from there is no way to attach a file. So

would need to use what ever email program you used to join group.

As one that that uses both PC and MAC with some LINUX use as well They all have

there own problems. MAC and LINUX may have less but harder to fix sometimes then

PC.

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> > > > > Hello:

> > > > >

> > > > > I posted a File in the " NIH Stories " folder with some of my thoughts

and obersvations on the two week stay here.

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> > > > > Mike

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