Hi everyone-

Well the last 3 weeks have been a real adventure.  The last time I talked to
you my  I had gone to the doc on the 1st of June and the doc had told me to
come in Monday the 5th of June to get my vital signs checked and then come
back in 2 weeks.  Well I went in the 5th of June and my VS were totally
screwy and I was really weak.  The doctor wasn;t in so Jackie (one of the
RNs) said that I should come back the next day so they could re-check the VS.
 So I went the 6th of June and was doing pretty well my VS were much more
normal although still abonrmal.  Then Susie who did my VS on that day --the
6th (another RN) saw the note from Jackie and decided that she would show
both days VS reading to Dr. Joseph ("might as well he's sitting in the next
room).  So he comes in and we chat a little.  He ordered a spirometry --since
the SOB (shortness of breath) had still  not deminshed and we had stoped the
medication that we thought might be causing it 5 days before.  And we talked
about the posibility of a refural to a pulmonologist or a nurologist.  And so
I was just spose to continue on till my next appointment since I was better.

Then on Wensday the 7th -- I had rescheduled a counsling appointment from
Monday to Wensday because I wasn;t doing well monday--well I go over to the
counsling center after my Englsih Class and Julie my counslor comes out and
pushes me back to her little room (this is the schools counsling center) and
she asks me "Anee are you all right?"  she could tell right away I wasn't and
I told her about all this that I have been telling you just now.  I told her
that I really did not know.  So she asks would you like to go over to the
student health center?  And I was like "well I don't know...I guess maby it
would be a good idea."  Now durring all this I could hardly talk at all or
think I was just  really out of it which anyone could see just by looking at
me.  So Julie gets her purse and tells the secretary that she is going to
take me over to student health.  Now my appointment with Julie was at 3 and
the student health center closes at 3:30 in the summer and they lock the
doors at 3:15 so we got in the door like at 3:12.  There were no other
patients there.  The 2 receptionist were kind of busy --both  were on the
phone. One hangs up and says hi Anee how are you today what can I do for
you...well Julie was trying to tell her what was going on, I couldn't really
put anything together because I was having a really hard time breathing ...
now the waiting room is perallel to the main hall of the clinic has places
that you can see the main hall to the clinic.  Susie is on her way to return
a file to the reception/records area which is compleetly oppen to the waiting
room.  Well she sees me as she is on her way to the reception area and she
enters the reception area and Julie is still trying to explain to the
receptionist what is happening well susie of course was famillir with what
was going on as I had been in the office so much and she is one of the health
care providers--so she comes around and grabs my chair and pushes me back to
one of the exam rooms.  We are quickly joined by Paullett (another of the
RNs) and they take all my vital signs which were at this time very wierd my
BP was 168/110! my heart rate was like 98, which was better then the 112 I
had one the preceeding thursday.  Susie and Paulett are asking me stuff you
know like "what's wrong" and "how do you feel" the whole time this is going
on.  And I told them I felt really tiered. Which they could probably tell
since I could barly sit up and couldn;t hold a conversation.  Dr. Joseph
comes in about 4 minutes after they get me in the room.  They are still in
the process of pulling my chart at this point.  The doc is like "what is
going on?"  and Susie explains with Paluettt chiming in.  So anyway the doc
goes and dose a full physical exam and asks me a bunch of questions which I
really couldn't answer--it was like I couldn't think.  He asks "How do you
feel" and I say that I am tired and I expain also that it's "like I can't
think".  He ordered a second spirometry, a chest x-ray and a bunch of labs.
By the end of all this I was improving very rapidly so he says well come back
in a week and if these tests don't show anything I'll send you to a
pulmonolgist for a consult.  So I went back on the 15th of June    and Dr.
Joseph called his friend Dr. Jackson to explain my case and see if he wanted
to see me.  Well Dr. Jackson said he would do a consult...so this is
happening the 27th of June and then I go back to see Dr. Joseph for follow up
after my appointement with Dr. Jackson.  luckly I haven't had very much
shortness of breath at all for the past week.

Dr. Joseph knows about CPIC and that I have some experience with people with
CP, as well as the fact that I read alot on the subject and so he asks
me..."have you ever seen anything like this in people with CP?" And I respond
that "I had not seen it in anyone with my level of involvement who was not
diagnosed with asthma or something, but that I had seen it when I worked with
the severe an profound."  Now I happend across something today on the AACPDM
web site (actullay it was a link from that site to another page) and I was
just browsing over this article on aging and cp.  Actually I know I have read
this article before but I just never noticed this one sentence:

"Aging can bring pulmonary changes that impair breath controll wich in turn
can make make speech nearly impossible..."

Sometimes that is exactly how I would discribe it--like I can't cordinate
inhalation and exhealation process that we use to breathe.

I am going to bring this new discovery to their attention at my appointments.

So I want to ask all the adults with CP on this list one more time has anyone
had this type of breathing problem before, or seen it in someone with CP?
By the way any idea of how many of us adults with CP there are on this list?
Just so I can estimate how many of us I know. I don't realy think it is CP
realted but who knows I have been having problems related to aging
(arthritis, fatigue, etc.) and CP sicne I was 16!  I am now 21.  Usualy these
problems don't show up till your 20's and 30's according to what I have seen
on the list and what I have seen in the litrature that has been slowly
apearing on the subject.  Now I have only seen this pulmonary stuff mentioned
in this one article I found today--and I have read and seen alot, but I just
wanted to do a little exploration before I go to see Dr. Jackson and back to
Dr. Joseph.  Dr. Joseph dosn't really think that Dr. Jackson is going to find
anything but he wants to explor all the posibilities as do I.

I know this has been a very long e-mail.  Thanks in advance for any imput.
As always if you have any questions about CP feel free to contact me.  The
website should be back up to full capacity within a cupple of weeks.

Yours,

Anee Stanford
Founder of CPIC
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http://www.geocities.com/aneecp/
ICQ # 67019089
AOLIM: Anee