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Follow-Up

Dear Dr.

Thanks so much for your previous information.  As a quick recap I have been having periodic "spells" always at night that start off with a feeling of nausea, chills, tightening in the left side, vomitting and then feeling fine.  This has happened 5 times in the last couple of months.  With the exception of being overweight I am healthly and don't drink or smoke. As per your advice I ended up going to the Urgent Care clinic after reading your response.  I had a Chest X-Ray, EKG, doppler (because of previous PE) and loads of blood work all of which came back normal (including INR & D-Dimer).  He pretty much told me there is nothing wrong with me and it's probably anxiety. Needless to say I wasn't surprised by this because a year and a half ago I went to the ER 4 times, was told i was "another anxious woman" and ended up that I had a PE and not anxiety.  Needless to say i'm not sure if these tests are sufficient in determining heart attack/disease.  Are there other tests I should insist on with my GP?

Thanks again! I wish we had such caring dr's in Toronto!!!

Liz
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Avatar universal
You guys crack me up
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21064 tn?1309308733
Please let it go. She knows the "rules" and has agreed to follow them.  JEEZ!

We wouldn't even have these rules but for the fact that some people were annoyed with some of the postings. A gentle reminder is all that is necessary, and that has already been done.

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Avatar universal
Give it a rest!  Good Lord I now know what the "rules" are. However I would say it was more of a common courtesy suggestion than anything. You people who attack immediately really should find something else to occupy your time!
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Avatar universal
whats the big deal about reminding Liz of the posting rules rules are rules PERIOD  if she abides by them from this point forward OK if not then bring on Cindy from the forum ....
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21064 tn?1309308733
I am so happy to hear that 2004 is better!!  

We do share some similarities although you have been through MUCH more than me.  I have not had OHS and dealt primarily with pvcs, nsvt and some scattered pacs. Those were OK till the CM occurred.  I have not been cardioverted, but have had 2 very successful ablations.  Seems that you and Marilyn share a lot of similarties.  You guys are leading the pack with all that you have had done.

I do experience some dizziness, but I think it is from the new RX for BP.  As I adjust to the medicine, it is lessening.

Stay healthy and here's to a GREAT '05!!

I had also learned to "live with" the palps. Actually, it was a really strange feeling (for me) when I no longer had them. Odd as that sounds, it took some getting used to.  Yes, a lot like cramps or a headache...."This too shall pass --- eventually."

Have a wonderful holiday!!!
connie
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21064 tn?1309308733
You're welcome!!  Kudos to you for giving it your best shot!! Sooooo....turning 50, huh?  That's right around the corner for me too (2007).

I've had so many tests to assess my regurg, too many echos and stress tests to count, and several stress echos. The most recent stress echo was in November and that's the one where the interpreting physician saw "severe" regurg. My doctor was not convinced because that happened once before and she sent me to Dr. Lauer at CCF for a TEE (result: 2 - 3+). Because she was not convinced (the hemodynamics are always changing and because docs interpret differently) she had a panel of echocardiographers compare my tests from 2000 until now.  They do not think the leak is severe. The "pictures" appear the same as in 2000 so we will continue to watch. My exercise tolerance did go down from the last stress test to this one), but it was still good.  

You can walk, talk AND breathe at the same time!! I see definite improvement in that area since I began my walks.  Hmmmm....an 8 minute mile, and I was shooting for 14...LOL!!!  

I take my dog with me on the walks and he and I are both exhausted when we return...But, he's great company : ) I do have a treadmill so on bad days I may have to resort to that..YUK!!

A race...me??  Uh, I don't think I could manage that. But, I am determined to walk farther!! Where I walk there are a lot of hills so I'm huffing and puffing as it is. I'm not a runner, but I'm definitely noticing an improvement in my "speed" (I use that word cautiously..haha).

Good luck on getting that trophy!!
connie

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66068 tn?1365193181
Marilyn,

You certainly are an inspiration! With all you've been through and running as you do.  I used to do quite a bit of road running 25-30 years ago (even marathons)at about a 7 minute/mile pace.  Now, at 62, I'm lucky to "jog" 2 miles three times a week at a 10 min/mile pace.  I generally walk 2 - 4 miles on other days. If I push harder, say at a 9 min/mi pace which I feel comfortable with, I usually will have an episode of afib later that day. I agree about the social aspect of races.  You meet the nicest people at such events. I do miss that.

Best wishes for nice weather at Hyannis Mass and the 5k Jingle Bell run on Saturday.
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Avatar universal
Hi, thank you Connie for your 'heartfelt' congrats.  

What I learned from the CCF is that even though 'normal echo's' were being performed every 6 mos to monitor my leaky valve - they showed moderate to severe regurg - but I was asymptomatic -what really showed the true picture was when CCF doctor suggested I have an "exercise" stress echo - and when I had that done it gave alot more information on my exercise tolerance that was not good - so that was the deciding factor that I was now symptomatic and that it was 'time' to proceed with surgery.  I'm breathing much better now.  I can actually walk, talk and breath all at the same time now since my surgery.. Its a miracle - well not really - its a super fantastic surgeon that did it for me.  He gave me a ST. Jude 29mm valve..  I know I asked for whichever mechanical valve will give me an 8:00 minute mile !!  But I don't think I got that valve..  I keep trying - but its not happening - maybe next year..  Maybe they don't make them for 8:00 minute mile valves and he didn't have the heart to tell me..  :-)

I give all my medals and what few trophys I've won to my doctors..  I feel its my 'best' way of saying;  Thank You - you've made a difference in my quality of life and I want to give this to you to show my appreciation..  They were alittle overwhelmed at first..  But then the second medal comes and the third and - they just think its amazing that I can do this - considering I have a fairly serious heart problems..  

You said:  I'm trying to stay focused and so far I've reached my first couple of short-term goals. I'm up to 2 miles 3x a week. It's no marathon, but who knows what the futgure holds : )

Good for you - keep it up and remember to make it FUN..  and you'll do it for a lifetime..  

Anyway, I wondered if you ever had to deal with elevated BP before and after your MV surgery. I have NEVER had high bp so this is a new arena for me. I am taking an ACE inhibitor and increasing the dose as tolerated. BTW, where did you have your MV surgery?   I had my surgery in New Hampshire.

Yes, I've had high BP from time to time over the years.  Took meds for it..  I have a home BP monitor and I take it maybe 3 times a month and when I go to my cardio - I give him the readings..  He checks my BP monitor once a year to see that its accurate..  

So, do you want to do a race someday?  They are alot of FUN..  
I'm hopeing to do a half marathon in Hyannis Mass in February.. If the weather is good..  Last time I was going to do this race it rained and we got sleet the night before and its a good 3 hour drive from home so I didn't go..  But I hear its a good race and a really nice course..  I did 35 races last year - 6 were half marathons..  I wasn't breathing so well though.  But I didn't give up - I kept going - nearly wore myself to exhaustion..  I had a goal to do 35 and I was going to do it..  My Pacemaker doesn't recognize 'hills' so I don't get any extra beats for that so it hurts my race time when I reach the hills.  But thats ok - I still have FUN..  I got quite a few finishing medals last year - several for the half marathons and some for actually 'winning' the filly's category..   Next year I'll be 50 and there's not alot of women runners in the 50's - so I should do really well in getting some medals..  :-)  I just hope I get a trophy..  I would love to give one to my surgeon.  He's just so happy for me..  But I can assure you he's not happier than I am !!!  Got a 5k Jingle Bell run this Saturday - nice course..  good food at the finish line and lots of nice people..  Running races is kind of a social gathering you might say..  


Marilyn (runner)
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Avatar universal
Hi,

I can't believe how similar our histories are!!! I have been there and dealt with all you have described...had two open heart surgeries, PPM atrial fib/flutter with 9 cardioversions, attempted Atr flutter ablation, then AV node ablation, then heart failure, then Bi-V pacer and ICD for easily induced Ventricular Tach and Ventricular Fib.  I was devastated with each new problem but it lasted a couple of days and then I would decide to live my life and go forward.  Things are better but now I have dizziness etc..don't know what that is all about..so they are looking at arrhythmias..I think maybe an embolus of some sort, though small because I was off coumadin etc. for the procedures and then had bleeding so they waited a while to restart...but who knows.  I am hopeful it all passes.

Yes, I would love to be only plagued with palpitations...oh to go back to those days..I have always ignored them and just lived with them...sort of like monthly "cramps".
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Avatar universal


Please look back in the Archives under Topic Area Heart-General

Subject MED HELP NEEDS YOUR HELP (reply CCF M.D. RCJ on 3/5/2004)  This was posted by cindy asking that persons limit their questions by waiting 2 months to ask another question.

Also look back in the archive under same Topic Area

Subject A REMINDER FROM MED HELP (reply CCF M.D MJM 10/14/2004)

This was posted again by cindy asking if I remember correctly that a person limit their questions to basically 2 every six months or 2 questions only within a 6 month period.

The first was prompted when I posted several questions within a few days time, at that time there was no rule on posting , I admit I felt guilty for being so lucky at the time to get so many questions posted, even though some I asked for other persons not myself as they were having difficulty posting.Another person Dottycese, If remember correctly who had serious heart problems was outrageously attacked and going through a very rough time, so that DR. RCJ was kind enough to contact her and ask her to return to the forum.

About the forum police, I agree with the person that stated why some are singled out to be picked on,while other are not, hell I am even picked on for my comments, much less my questions.

Lets be kind to one another here, no matter of insignificant a comment or question might appear to be for some. Maybe the rules could also be added in the purple space right under each question, that way all new vistors would be aware of the rules and abide by them.

I wore a real Badge 22 years ago and never once did I abuse the authority it gave me, I always approached a situation in humble way and over 95% of the time got a positive response. If some were given a badge, not one would stand a chance with them, they are persons that just can't handle authority, I suspect that might be the attitude of some of the so called forum police.
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Avatar universal
Good Lord!  I thought this board was here to help people not to criticize!  Perhaps if you read more carefully you'll see that I didn't ask the same question twice but reiterated the issue so the Dr. wouldn't have to look for it.  I was asking for his opinion on the testing I received the second time, I wasn't asking the same question again.  If people are so concerned about what is being posted and how many times, perhaps they need to find something else to occupy their time other than nit-picking over silly senseless things in an already stressful situation.
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21064 tn?1309308733
"If people are so concerned about what is being posted and how many times, perhaps they need to find something else to occupy their time other than nit-picking over silly senseless things in an already stressful situation."

I agree.  Hope you are feeling better!
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66068 tn?1365193181
"Where are all the posting police? Liz just asked a question on 11/24 and another one today 11/29 and the question is essentially the same thing. or do you folks just pick on certain individuals. I find this very peculiar."

Hey, when I reminded folks about the posting rules (on 11/8), I was bombarded by several posters, got into an argument and said some nasty things that I'm now ashamed of. So, I've turned in my badge. And Marilyn (runner) hasn't posted (at all) since her last complaint created a similar ruckus.

"Police" action tends to be arbitrary and capricious because it depends on who's brave enough on any given day to withstand the emotional outburst following 'enforcement' - - -just look at Liz1971's response to your question above. BTW, Liz appears to have missed your point that it's impolite to ask two questions within a few days of each other.

Tony
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Avatar universal
Perhaps someone should post the "Rules" and the correct protocol if there is such a beast.  I'd be curious to know who made these "Rules" on a free (thankfully)forum that we all benefit from.  Let's please stick to the issues at hand and not take our bad days and/or Ruler complex out on everyone else.
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66068 tn?1365193181
This message from Cindy was originally posted on Oct. 13.

"Our Heart Forum can support only 2 new questions each day. Therefore, we ask that you limit your questions to 2 per 6 month period. We do this so that all in need will have a chance at getting their questions asked and answered by the wonderful cardiologists at The Cleveland Clinic.

We appreciate everyone's cooperation.

Cindy Thompson
Med Help International"
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Avatar universal
I hear you and understand what your saying.  Personally im so tired of reminding these people of the rules. Seems no one pays any attention anyways.   Kind of like your damned if you say something and damned if you dont on this board.  So what do you do?  The newbies might not know any better but people that have been here a while know.
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Avatar universal
I agree with Tony and Hank. But I wonder if the people monitoring this site only pick on certain people. It seems that only a select few get warned by Medhelp. I don't see them saying anything when all these recent posters have posted more than once in a short time.

I was temporarily barred from this site because Medhelp accused me of giving medical advice to a poster when my comment was identical to the answer that the Cardio Doctor gave. Now you notice whenever I comment, I say that I'm not a doctor and this is only my opinion.

Do they pick on only certain individuals? I think so. And it tends to be the people that have the most knowledge.
Helpful - 0
21064 tn?1309308733
What I've noticed is that the "police" only arrive when someone calls them...

I was fortunate in that I was able to post 2 questions in Feb. 2003. The doctor said he would "watch for follow up posts" so I know there was no rule at that time.  Funny thing is, NONE of this bashing was going on either. I consider myself very lucky to have posted my questions when I did.  Dr. "RCJ" was concerned about my situation and gave me his email.  We corresponded quite a bit and he and I both contacted one of the CCF doctors (Dr. "T") who was involved in a TEE I had done there.  Dr. "T" graciously called me at home a couple of times and also agreed to call my own physician (at another hospital).  I am so grateful for the collaborative efforts of these physicians.  Fortunately, there were no posting "rules" at that time. I would hate to see the forum sponsors impose further "rules" to satisfy the ongoing, childish and unnecessary behaviour that continues to saturate this board.  Up until now, I have made it a point not to join in the antics, but I just can't understand why people find it so necessary to continually dredge this stuff up. I thought the whole idea here was to gather some medical advice from a trained physician as well as to give/take the support of others in similar situations.  

PLEASE let's move on for good this time.
connie
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Avatar universal
Well said Connie!!!!
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Avatar universal

I will second the motion 100%. I am with you all the way!!!

Regards and peace to all.
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21064 tn?1309308733
Hi, thanks for your commenting on the repercussions of disagreeing with the 'groupies' here on this board.. I check the board maybe once a week - but personally I find it to be as others have indicated - its the 'same' ole thing.. PVC questions are every other post...

Unfortunately, my heart situation is alittle more serious then PVC's.. I deal more with 'full heart block' - Defibrilator programming - Pacemaker programs.. Coumadin and listening to my clicking mechanical mitral valve.. which I happen to like to listen to... :-) I don't consider my heart disease to be a negative impact on my life - its just a small obstacle - that from time to time I have to tend to.. Its not my 'whole' life - its a part of my life..

I was very fortunate in that I found the CCF doctors to be most helpful - when I needed them and I will always be thankful for the medical information they provided to me.. In the future I will no doubt see them in person if I need any information or a second opinion.

I just completed my 18th road race since my open heart in May !! Congratulations on all those races!!  Better clear a place on the mantle for that trophy!!  I was experiencing some pretty significant SOB and some elevated BP (new) so I started walking again about 7 weeks ago.  I'm trying to stay focused and so far I've reached my first couple of short-term goals.  I'm up to 2 miles 3x a week.  It's no marathon, but who knows what the futgure holds : )

We definitely have something in common -- I'm also a case study, but for pvcs and cardiomyopathy -- a strange path to fame, huh?  hahahaha.....

Fortunatley, my leaky mitral valve is stable.  There was some concern that the regurg was severe so my doctor presented my case to an expert from California last week.  I asked the doctor how it went and the concensus of the experts was, it was not severe as was first reported...Whew!!  For now, I am still in the watch and wait room. I was concerned that the SOB was because of the valve, but it appears not to be the case -- a good thing.  

Anyway, I wondered if you ever had to deal with elevated BP before and after your MV surgery.  I have NEVER had high bp so this is a new arena for me.  I am taking an ACE inhibitor and increasing the dose as tolerated.  BTW, where did you have your MV surgery?

Again, a heartfelt congrats on your road races!!

Connie




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Avatar universal

I think all should abide by the rules, that is why i think they should be noted in purple just below the questions asked, that way all new comer will know the rules and the regular reminded.

However decide on what rule you want to really apply, the 2 month rule or the 6 month rule ,as I posted above for reference.

They have apparently been more complaints from some, so the rules changed recently to accomodate those that complain. Make a definite rule and see how that holds for awhile. That is my suggestion, that way the "rules" on posting a question can hopefully be put to rest for sometime.
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Avatar universal
I agree with you totally.  We have to realize there has to be some kind of guidelines or the same people would ask questions all the time.  Now guys I know you all dont want me asking the drs about my pvc's everyday....lol  Just trying a little humor there.  There does need to be something that lets the newbies know what the rules are simply because they dont know.  I dont like to call out on the posting to the newbies because they are new and I dont want to offend them.  I dont mind calling out the regulars though because they do know what the forum request.
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Avatar universal
Just curious how many stressed induced PVC's were occuring while comments were being typed? Imagine the world and all who have access to the web......it is still and always luck of the draw when someone is able to post a question......learn from what others have to ask and offer on this forum......be patient or end up being one over matters you do not have control over.
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