Re: NIH surprise, catching up

[Guest guest]

,

Yes please do let us know how Sara's biopsies turn out!

I'm still waiting for my biopsies to come back from NIH, the EDS ones. Long

wait!

Sincerely, S.

NIH surprise, catching up

> Hi guys,

> I have missed you all so much!

> I am back from my visit to NIH. The people there always amaze me with

their

> kindnesses , interest and smarts. Right now , they do not have a program

> coordinator whose job it is to field phone calls and act as a type of

manager but

> they were interviewing one yesterday afternoon .Then hopefully, Dr.

McDonnell

> who is trying to also do that, will be relieved of that duty. THat will

make

> getting responses a lot quicker. They also need people with Marfans for

that

> study.

>

> I was suposed to go to s Hopkins yesterday after finishing up with

NIH.

> IN the morning, I ,unfortunately had a pretty bad POTS episode that

changed a

> lot of the day for me!! Although I did not pass out completely, it was

still

> one of m y worst! I was wearing a holter monitor at the time so it was all

> captured on that. I was unable to speak or lift my arms or legs for such

a long

> period of time this episode. The IV fluids helped a lot but it took me a

long

> time to recover. Even after several hours, when standing, my bp was still

> dropping and my HR going up. I asked them if they really wanted EDSers

with POTS

> too! We can be a lot of trouble! One of the doctors even drove me to the

train

> station. They also had Dr. Levy from Hopkins call me there on the phone as

I

> was unable to go see him. Everyone was so wonderful and the unit, which

til now

> has seen only healthy volunteers in the Aging study, was running around

> ,crowded around my bedside concerned and trying to help. It of course took

their

> calling in someone to get the iv started. They said that my veins were so

> crooked and were actually bending the little catheter thingy.

>

> My phone call to my Hopkins doc resulted in my being lectured more about

> doing too much and pushing through pain. He told me I needed to get rid of

this

> attitude that I have had for too long and that it is only hurting

> me....literally. He talked about the " ridiculously small steps " that need

to be taken when

> trying to strenghten our bodies...like 5 steps at a time instead of down

the

> block. He is still pushing for using a scooter or wheelchair at times and

I am

> just not ready for that. I can't see myself there. I know many of you have

gone

> through this. My doc even told me to talk to one of you that is so close

to

> me that sees him too . She and I have talked about this in the past.

>

> Well, enough. I am better this morning and have missed you all. Hopefully,

we

> will find out about Sara today.

> love,

>

>

>

>

[Guest guest]

I am

> just not ready for that. I can't see myself there. I know many of

you have gone

> through this. My doc even told me to talk to one of you that is so

close to

> me that sees him too . She and I have talked about this in the past.

>

> Well, enough. I am better this morning and have missed you all.

Hopefully, we

> will find out about Sara today.

, if you would just try one, you may find you feel so much

better, that you will wonder why you didn't do it before! Just a

thought. Praying for Sara - please let us know asap, OK?

Love Lana

[Guest guest]

I am

> just not ready for that. I can't see myself there. I know many of

you have gone

> through this. My doc even told me to talk to one of you that is so

close to

> me that sees him too . She and I have talked about this in the past.

>

> Well, enough. I am better this morning and have missed you all.

Hopefully, we

> will find out about Sara today.

, if you would just try one, you may find you feel so much

better, that you will wonder why you didn't do it before! Just a

thought. Praying for Sara - please let us know asap, OK?

Love Lana