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Chatting For Hearts...Part V

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Heart & Cardiovascular Disease
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Posted 8/9/2005 2:45 PM (GMT 0)
Teri HOpe yuo are feeling Better.

Oona did you turn in yuor mointer yet let us know what happens ok

 

Libby Full moon on the 19th

 

Lil please no more 911 one calls  sweetie

 

KAthylyn hope to see yu in chat on Thursday

 

I am geting on in my life with these college classes will last 3 weks Mon-thursd. 9-1 then computer ones 2-3:30 will love it all.

Well all is going well here except lower back ache no kidney trouble just my back bone been doing to much heavy lifting and need to keep it up till we get cold water pipe fixed. Whenever that willbe?????

 

Well sun shining now and afternonn storms coming in to. Hope all is well with everyone and  teri hopefully yu'll be feling better today.

Heidi

Posted 8/9/2005 5:10 PM (GMT 0)
Hi everyone!

Thought I'd drop you all a line. It's been awhile since I was here at HW but I'm glad to be back. Heidi (heartangel) suggested I come back over and check things out here and I'm glad I did. For those who don't know me, my name is Julia, I'm a married (to Brent) mom of three (13, 9 & 6 - Megan, Jacob, Emily). I am also a heart attack survivor of 3 years. I have also survived OHS(single bypass & Valve repair surgery) and most recently the placement of an ICD. tongue   So, as you can see, I can say rightfully say "BEEN THERE, DONE THAT".... yeah

I've been lurking and reading the last few days over lots of the posts and I can see we have lots of wonderful, beautiful hearts here and I hope to get to know each one of you better. :-)

Julia

 

Posted 8/9/2005 6:21 PM (GMT 0)

hi Mommy 3

welcome aboard :-) :-) :-) :-) :-) :-) :-) :-)

so glad yu are abaord too and yes you will love it here too and see plenty of faces and names you allready know. BTW we are haveing a chat this Thursday at 8Pm CST thursday hope to see you their.

LOve ya

Heidi

Posted 8/9/2005 7:46 PM (GMT 0)
Julia, I'm glad to see you here and I look forward to getting to know you. Gads, you've been through such a lot! I hope you're feeling much better now since your ICD and that will truly be it for a very loooooooong time. yeah
Heidi, yes another day half gone, lol! - I left at 10:15 and got back about 1, but this time I was able to go after rush hour and things were much more relaxed today.
After I flopped the holter on the desk, I went to the Echo clinic to see if I could get a CD copy of my echo from last year. That was easy - they're going to mail it to me....then I thought I'd just ask if ~maybe~ they could move up my echo from 10/19. In case you guys noticed a blinding light this morning, let me tell you - the heavens parted, and they gave me an appt for 8/30!!!! WOW. lol! (I'm still in shock)
I don't know if I mentioned this here before, but I have an appt. with a cardio at Cleveland Clinic on 9/7. This is because my referral to see a cardio at the teaching hosp. is taking FOREVER, still no date. Finally, it seems like things are getting unstuck!?!?! Maybe....
Teri, I sure hope you're feeling better today! Are the meds helping?
hugs to all,
Oona
Posted 8/9/2005 7:56 PM (GMT 0)
OOna things are loking up for you now on Aug 30th with the cardio dept that is great just please do what they suggest eevn though it n might be surgery if they need to do it to corest yuor problem and geting a copy of yur echo too which is good. Now things are loking up for yuo. I still hope yu are going to the Clevand Clinic too get a second opion and go from their too.

Tippee no rush hour I hate it too but sometimes we have to put up wioth it to get stuff done.

 

Yes teri I do hope you are feling better too.

JUlia please join us in chat too on Thursday at 8 Pm CST  ok.

 

I am doing ok trying torst too been through the ringer nad now trt ying to deep clean etc before I start takeing baby steps to my big step in sept for this college progrm which i really need and it is a good shot in the arm too.

 

Heidi

Posted 8/9/2005 7:59 PM (GMT 0)
Hi and Welcome back Mommy (Julia)!! :)

It has been a while since we've talked but I expect that we'll catch up real quick! :)

When did you you have the ICD put in? Are you really doing okay?!
How are your kids?

Lots of questions and plenty of time - I just wanted you to know that you've been missed!!

Hugs, Teri :)
xoxoxo
Posted 8/10/2005 1:41 AM (GMT 0)
Oona hope to see yuo in chat tomorrow night

 

Libby hope you will be there too

Lil if yuo come on if you want you can ell us baout your camp Er visit ok

 

Julia Come on Aboard

 

all others hope to se yuo at chat this way we get to know each other those nights i have a fast dinner and hardly any dishes to doa dn i also get to know each opther and make friends rtoo.

Heidi

Posted 8/10/2005 2:40 AM (GMT 0)
Oona, I'm sorry, but in my Neurontin daze :) since the increase, I didn't even see your earlier post today!

Great News for you that they moved up your appt., and are sending your echo copy - let's hope the rest moves as smoothly for you!! I will continue to hope that your test results will end with good news!

Re my neuro pain, it's still there, however the increase in Neurontin to 600 mg. up from 300 mg. has made a big difference - next week I move up to 900 mg. per day. Thanks for caring!!

Big Hugs always, Teri :)
xoxoxo
Posted 8/10/2005 3:01 AM (GMT 0)
Thanks Teri! This whole thing feels like "Niagara Falls, slooooooowly I turn...." (remember that? lol!) Boy that's a whopper of a dosage! At least, it sounds like it to me but I know nothing about this. I'm just glad it's making a difference. When's your next appt.?
Big Hugs to you & I care very much!
Oona
Posted 8/10/2005 1:55 PM (GMT 0)

Hi Teri

Hope yu are feeling better this Am and the medicine is helping now. Yep that is a big dose but if helps that is great. I remember yousaying in one post yuo start out on a baby dose then work yuor way up to the dose that works.

Oona keep us posted abuot yuor Dr appoinments and what they say about the  treatments they want to do we are here for yu my fla sister.

Libby hope yuo are ok have you've decided what to do yet withm yuor short leave of absence?

Kathlynn check in when you can how is yur mom doing?

Lil post when yuo can i know yuo are allready busy teaching schol or geting ready for school good luck this year.

I am busy doing clothes and using clothes lines too.also watching Tropical Storm Irene we are on call again and on stsnd by for they think justa  tropical storm but still donot know where it will hit on the east coast they are saying somewhere along Fla from South fla all the way up to the Carolinas it is  going north south  then still West being very wobbly well I'll pst later ya all.

HEidi

Posted 8/10/2005 3:13 PM (GMT 0)

Hey everyone!

Thanks for the warm welcome! smurf

Great to hear from you again Terri. I'm doing well with the ICD. Still a bit emotional about the whole thing. You know getting adjusted to having "it" in my shoudler....but trying to keep a good attitude about receiving one. It's my safety net I case I need it, yet it reminds me once again of the disease that has taken it's toll on my body, etc...BLAH, BLAH, BLAH sad mad sad . Before we made our move back to Indiana this summer, my doctors in Georgia suggested that I should do an EP study as I had a couple of episodes of racing heartbeats and my EF was hovering around the 35 - 40% area. I found out that now they are expanding the criteria of MI patients who can receive an ICD. I used to be that if your EF fell below 30% you were a candidate for one, but they are expanding that those who have an EF 40% and below. So I met the standard and during the EP study they had absolutely NO problem getting my heart to go into VT, SOOOO....now I have my ICD......

I feel terific otherwise....I don't have SOB, no angina, no swelling....never have had any of these things despite having an MI. I feel wonderful, yet I've got a damaged heart....It's kinda hard to really understand how I can feel so good and yet have a significant problem with my health sad . I'm sure you can relate....or at least I hope you all can.

Well, I've got to get moving. Megan and I are doing a cooking day today. Getting several meal items fixed up to go into the freezer. The school year starts on Aug. 24th around here and I always like to have the freezer well stocked so that meal prep is quick and easy during the hectic school season. yeah

Catch you all later!

Julia

Posted 8/10/2005 3:39 PM (GMT 0)

Enjoy your meal coking day to make and freeze and easy meal preps. Boy do i remmeber that when our kids lived at home they are grown one is married expecting his first child this  FEb 06 and other one going through a divorce adn is living with a girl who has a kid from her first marriage so we have a grand daughter in 1st grade 6 going on 16 our son tells us.

But yes  You have been through alot and  when we get those ICD's remids us of our  disease everyday but then it also reminds us we are a Survivor too. and I like that term for us We Are a   SURVIVOR :-) .

PLease try to make chat if you can on Thursday nights at 8 pm CST time. well gott o go watch news and kep up with the weather with tropical storm Irene then call EOC and see what their update is too and where we are we on he call up scale?

Heidi

Posted 8/10/2005 5:54 PM (GMT 0)

hi everyone, i have lots of questions for various folks!:

oona - how did you get into cleveland clinic?  i heard that's THE place to go for heart treatment.  i hope you get some satisfaction there.  is that a different appt than your 8/30 one?

teri - wow, can't believe the dosage of neurontin.  i'm glad you're feeling better, but hope you're not so wasted that you can't function OK.  geez.  i know what that means really, how much pain you must be in, and i'm so sorry.

heidi - yes, i have the 8:00 "texas time" forum down on my calendar, and hopefully will have no reason to miss!

julia - welcome to the best chat room i've ever been in!  i keep saying i feel like i have a loving, second family.  i know what you mean about feeling well...although, i don't!  my problem is that i LOOK ok, so i see people and they say "you look fine, what do you mean you have restrictions?"  people like my boss say this!  it's very difficult to deal with.  "those" people think that i must be a bit of a hypochondriac, and that's really, really annoying! 

chat with you all on thursday!

libby

Posted 8/10/2005 6:24 PM (GMT 0)

Libby

I get that too  when I say I have had two heart attacks  you donot loook Ill they telle so i have ben there and done that too. Yep see yuo on Thursday too and lok forward to some questions too.

Heidi

Posted 8/10/2005 7:16 PM (GMT 0)
Libby, I just went to their website, found the phone number and called them. I wish I had thought of doing this months ago. I'm in FL and there are two clinics near my area - one is an hour away. The other is about a 2 hr drive, and that one has the cardio that I believe would be best for me, & that is who my consult is with. They don't care (unlike every other cardio in my area) that I don't have health insurance and self-referral is fine. I'm uninsurable, and I can only afford a consult, which is all this is on 9/7. The other appointments are with the teaching hospital, and those are just prelim testing (as if my heart history & current symptoms don't matter) and they are *pursuant* to getting a cardio referral. I plan to take my test results with me for the consult at CC, which I assume will include a physical exam. My first priority is that I just need a diagnosis so I can apply for SDI. And I need to know what is happening. My asymptomatic times appear to be over as of about 3 yrs ago (the first two of which I had confused with anemia symptoms) My history is RF with 3 affected valves, MI's, LVH, PH, etc. In my late 20's, I had a hairball of a time with it, but then had almost 25 mostly asymptomatic years after that until about '02. Right now, I don't feel well at all, and I have been trying to get a referral to a cardio at the teaching hospital since January of this year - so far, still nothing but I have hope that things may be starting to move before too much longer.
hugs,
Oona
Posted 8/10/2005 7:30 PM (GMT 0)
hi oona,
that's just what i did with mayo, too - i just called them myself!
i hope that all your appointments go well, and they can give you some info to work with.
when you say you're "uninsurable" - join the club, except...my financial broker (who is
also a friend) told me that states all are required to have insurance that extends to
everyone, no matter what previous diagnoses, etc. of course it's not cheap. but i
just looked into that in texas and found that it would cost me about $400 a month,
and it's reasonably decent insurance. i'm wondering surely florida has something
about the same? all of us uninsurables (i've had cancer too, so i'm a real insurance
joy)...but at least the 400 a month would pay my medical bills better'n nothin' -
i'm sorry you're feeling so poorly. i hope that these consults will help you. i think
cleveland is the best shot you have at getting a good, clear, strong diagnosis, that's
my 2 cents, and you'll feel better for having gone and knowing you've seen the best!
libby
Posted 8/10/2005 7:49 PM (GMT 0)
Libby, here it would be over $1,000 a month and would have a 2 year exclusion for anything heart-related. Cardio consults at Cleveland Clinic are less than that (about half, plus or minus) and I doubt I would even do that on a monthly basis. I would definitely value their opinion. For any treatment and most of the tests, I would go to the teaching hospital. If I need a TEE, I would have that done at CC. I will not allow another cath, ever. I do think I would have alot less trouble with SDI with a diagnosis from CC than from most anywhere else.

PS - Does that mean you paid for your whole 10 days and all that testing at Mayo yourself????
OMG!

Post Edited (Famulus) : 8/10/2005 2:12:40 PM (GMT-6)

Posted 8/10/2005 9:30 PM (GMT 0)
Hi Everyone!!

I have received news today, that our other co mod, Kathy, has had her computer down. She was able to email through her computer at work today. I already miss you, Kathy!!! I do hope that something can be done to help you! We will all be waiting to hear from you!! xoxoxo

It's so great to see everyone here today! :) My son and his girlfriend are moving out today and I went with her for the walk thru of their townhouse. My daughter came along, too. So was nice to see where they'll be living and it's not far from us. :)

Julia, I am so sorry that you've had to go through so much and being so young with 3 children as well!! I am glad that you've found us here though, and I hope that you'll join in with us whenever you get the chance! btw, I used to do the cooking and the freezing of meals ahead of time, too. :)

Oona and Libby, I'm so glad that you both got together and could share some of your experiences - that's what we are all here for - and if it helps someone else, that's always a great feeling! :)

Heidi, I'm glad that you are here with me!! - you are right, we're all survivors here! :) xoxoxo

Still raining here in Central Tx. and my body feels like it's been through a tug of war. lol In the mud!

Bunches of Hugs to you all!! Teri :)
Posted 8/10/2005 9:45 PM (GMT 0)
Yep I heard from Kathy too Teri so we are crying and going into computer withdraws along with her.

Hey Libby maybe you and oona can e-mail each other or  talk to each other sounds like yuo all have so much in common. Yes here in JAx.,Fl. we have blue ross blue sheild for people who donot have insurance but to high $$$$$ and a  1 year  exclusion for no heart trouoble or visits to show yu are in somewhat good health .

What the heck are they thinking I see all my doctors every 6 months but we have that. But Kaythy I am mssing yuo too.

HEidi

 

Teri Glad you willhave peace and quiet with the kids moving ut but yu will miss them.

Posted 8/10/2005 11:50 PM (GMT 0)

hi oona,

nope, i didn't pay much out of pocket at all at mayo.  my current insurance picked up nearly 100% of it - and i'm thanking MAYO for that, not my insurance company.  mayo did every bit of the work, and all that was needed to "make" them pay up. 

that $1000/month, that's just crazy.  what are people thinking?  that is SO unfair, and i'm so sorry.

tell me, why do you feel so strongly about not ever having another heart cath?

libby

Posted 8/11/2005 5:07 AM (GMT 0)
I think the first cath's ever were done in '65 or 66 but those were experimental. It still wasn't commonplace at all even in '77 to have a cath. I find it alarming that so many are done now without what I would consider a very serious regard for the risks. I remember very clearly when they explained the risk of losing the use of my right arm (I'm a right-handed architect and back then we drew on paper), but I don't remember the heart attack warning at all. I had a heart attack during the cath, so that is why I won't have another even though I know the technology is vastly improved, I'm not doing that again!
Posted 8/11/2005 9:43 PM (GMT 0)
Hi Everyone!

Oona, I can certainly respect your opinion on this re caths, they definitely still carry big risks with them! However, I guess if my choice was life or death, I'd choose life and one with some substance to it...but this might be something for another chat another day. :) xoxoxo

I got a phone call from Lil the other day, however, I was in the shower and when I tried calling her back I got the answering machine and no call back - so I'm hoping to be able to reach her soon or that she comes here to post, before I worry too much!! Lil??

Hope everyone is doing well today! Hugs, Teri :)
Posted 8/11/2005 11:20 PM (GMT 0)

oona

I also agree with teri if it was life or death I would get another one  too. they have changed so much too maybe like she said on another chat  fla sister xoxoxoxo

Lil Hope you are ok and not back in the hospital?

Libby will yuo be in chat tonight?

Kathy we are still missing yu hope yuo get yuor puter fixed soon.

Heidi

Posted 8/11/2005 11:35 PM (GMT 0)

Hi y'all,

Teri, thanks for asking about me.  Actually, I wasn't doing so great.  I passed out yesterday morning and was out for a couple minutes.  I called my pcp and the nurse told me to come in.  My pcp was on vacation but someone else saw me and wanted me to see my cardio ASAP.  Saw my cardio's NP and she said she thinks it was bc I was coming off a high dose of prednisone (is 60mg a day high?) along with the fact I have neurocardiogenic syncope...my body just couldn't handle both at the same time...so down I went.

She decided to have me do the holter monitor a day early.  I was at my Group Reunion yesterday and could barely stand.  One of the group members drove me to her house and had me spend the night there.

I'm feeling better this now.  I'm still a little shakey and lightheaded.  And now broken out from wearing the holter monitor.  I'm seeing my cardio next Tuesday.  I should get the results from that then.  I've been having lots of tachy today...still hoping this is healing.

smurf  Lil smurf

Posted 8/12/2005 12:00 AM (GMT 0)

lil

That dosage does seem a bit to high most peopls start out with 1 mg and go up to 50 mg at intervals to make sure you are not haveing side effects etc..

My furkid  Beaulha was one it for raceing heart at 120 mg  three times a day before she went to the bridge  and then Sons Great Dane is on it for itching and is on  10 mg 2ce a day. I am not comapring  this to you for they are furkids but they use it for the same things but Lil I wuold honestly lok into something else if prednisone is not working for you or makeing you feel worse. yuo got to take care of yourself and be around here a while Lil we miss you when you are not posting Heidi

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