Re: My Heart Journey Continues

[Guest guest]

Hi Issadora,

   I am sorry to hear that you are still having issues with your heart, I also

understand how much Pericarditis can take away from some of the very simple

every day things that you need to get done. Maggie has been having issues on and

off with this same diagnosis since November and it is more challenging than any

joint has ever been.

   Maggie's heart doctor explained to us that Pericarditis can actually be more

painful than an actual heart attack. By the amount of pain it causes her, I am

guessing he is right.  She does get some relief though if she leans forward and

hugs a pillow. (not great relief, but it does take the edge off of an attack)

   They did not give her motrin, they instead pumped her full of IV steroids and

then left her at a higher daily dose. The pain went away and the flare up went

down as the steroids went in. Sadly that was what really helped her the most,

those dreaded steroids that we love to hate so much have kept her alive many

times!!

   Her heart doctor also started her on Procardia XL and Colchicine, this has

helped also. From what I have seen with Maggie, she has flare ups and sometimes

at the same time and sometimes by itself the Pericarditis will flare up as well.

When this happens not only does she have chest pain, she is short of breath and

her heart races. The last time her heart rate went from 80 to 180 in less than

10min and she became dizzy then fell to the floor.

  We will say some extra prayers for you that you can get into your heart doctor

soon. I am sorry that you weren't given something better for your inflammation,

motrin works great for some things but as I am sure you know, steroids are the

best inflammatory med out there and they work the quickest.

   Hang in there! We are sending some gentle hugs your way!

   Diane and Maggie age 11(OI,CP,Uveitis,Systemic JIA, PIDD)

From: Issadora <FlyfreeIzzie@...>

Subject: My Heart Journey Continues

, ajao_young_adults ,

chronic_pain_lifestyle_sg , " Steve Terry " <swim2prk@...>,

" Adele " <avincent200@...>

Date: Saturday, January 10, 2009, 9:54 AM

Okay this is a BRIEF update because I am EXHAUSTED.

Due to increased chest pain/pressure symptoms and lack of getting a

cardiology appointment due to really LAME 'insurance' I went to the ER and

was kept under observation for around 14 hours? something of the sort....

They did a chest x-ray, EKG (came out, in the doctors words 'fairly normal')

and they did blood work on me twice. (my veins run away and are suck so

yuk)... vampires... blahh...

My cardiac enzymes were normal (Yay) and based on symptoms, etc the propsed

diagnosis is Pericarditis (for those that dont know.. it's inflammation in

some tissues around the heart).. problem is that diagnosis is a bit hard

because they did a ESR (erethrocyte sedementation rate) test for presence of

infdlamation but mine is alwasy HIGH and therefore knowing its high doesnt

really proove that i ahve pericarditis or not. He said that it ussualy shows

on the EKG and mine didn't show that but sometimes it doesn't! HOwever based

on the symptoms and my rheumatic issues and ESR, he felt this was the issue.

He put me on 800mg of ibuprofen (YUK) for a few days until I see my primary

care doctor (who I KNOW will do NOTHING but another EKG and want to know

when I will see the cardiologist (which is out of my hands... rolls eyes)...

urghhh... and bnasicaly ER said to definately go to cardilogist as soon a

possible (as if i have anything to do with that.. Imean really? what can i

do?)... he told me to lay low, rest, take my meds as usual and add the

nsaids for now event hough I told him they tend to bother my stomach ( =(

) and that was that....

Issadora

--

" How exactly does one become a butterfly? You must want to fly so badly that

you are willing to give up being a caterpillar. "

- Trina us

[Guest guest]

Izzy,

Hey, I just wanted to send you a note and let you know that I am thinking of

you. Each time you comment on how you are treated because you don't have the

insurance it just makes my blood boil.? Since I work in clinic for the

uninsured/underinsured I know that it is possible for people without any

insurance or those with limited insurance to get the care they need. I see our

nurses calling doctor after doctor to ask them to see a patient and to plead

with them to only charge them a very low amount or on a charitable care basis.?

It exhausts those that work on those lines to be rejected time after time but

they do not quit. They just hang up and call another number.?My prayer is?that

you will get the care you need very soon. I pray that you will have a doctor

that will see you for who you are and be willing to take the extra time to help

you.?

Veri

My Heart Journey Continues

> < %40>,

> ajao_young_adults <ajao_young_adults%40>,

>

chronic_pain_lifestyle_sg <chronic_pain_lifestyle_sg%40group\

s.com>,

> " Steve Terry " <swim2prk@... <swim2prk%40>>, " Adele " <

> avincent200@... <avincent200%40charter.net>>

> Date: Saturday, January 10, 2009, 9:54 AM

>

>

> Okay this is a BRIEF update because I am EXHAUSTED.

>

> Due to increased chest pain/pressure symptoms and lack of getting a

>

> cardiology appointment due to really LAME 'insurance' I went to the ER and

>

> was kept under observation for around 14 hours? something of the sort....

>

> They did a chest x-ray, EKG (came out, in the doctors words 'fairly

> normal')

>

> and they did blood work on me twice. (my veins run away and are suck so

>

> yuk)... vampires... blahh...

>

> My cardiac enzymes were normal (Yay) and based on symptoms, etc the propsed

>

> diagnosis is Pericarditis (for those that dont know.. it's inflammation in

>

> some tissues around the heart).. problem is that diagnosis is a bit hard

>

> because they did a ESR (erethrocyte sedementation rate) test for presence

> of

>

> infdlamation but mine is alwasy HIGH and therefore knowing its high doesnt

>

> really proove that i ahve pericarditis or not. He said that it ussualy

> shows

>

> on the EKG and mine didn't show that but sometimes it doesn't! HOwever

> based

>

> on the symptoms and my rheumatic issues and ESR, he felt this was the

> issue.

>

> He put me on 800mg of ibuprofen (YUK) for a few days until I see my primary

>

> care doctor (who I KNOW will do NOTHING but another EKG and want to know

>

> when I will see the cardiologist (which is out of my hands... rolls

> eyes)...

>

> urghhh... and bnasicaly ER said to definately go to cardilogist as soon a

>

> possible (as if i have anything to do with that.. Imean really? what can i

>

> do?)... he told me to lay low, rest, take my meds as usual and add the

>

> nsaids for now event hough I told him they tend to bother my stomach ( =(

>

> ) and that was that....

>

> Issadora

>

> --

>

> " How exactly does one become a butterfly? You must want to fly so badly

> that

>

> you are willing to give up being a caterpillar. "

>

> - Trina us

>

>