Correlation between PFO symptoms and super active lifestyle?

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greenhope
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Date Joined Oct 2008
Total Posts : 113
   Posted 11/18/2008 9:56 AM (GMT -6)   
I have an observation.  I hope some of you will chime in to let me know what you think.
 
I have been reading all the posts related to PFOs on this site mostly, but also on a couple of other places.  In addition, since my sedentary lifestyle due to my condition and now during my relaxing days of recovery, I have been doing a lot and LOTS of research to try and understand my condition - for me the more I know the better I feel.  I think it is safe to say that at this juncture of PFO research and knowledge, doctors DO NOT KNOW why we suddenly get symptoms (some of us more suddenly than others) after having lived with this hole in our hearts all of our lives.
 
I have also noticed that a lot of us who post are very fit and very active people (divers, runners, bikers, soccer players, etc.).  Or at least we were until we started developing our nasty symptoms!!!  I don't know if this is a trend of just people who post or a trend for people who have PFO symptoms in general.  I have started to wonder if there is some type of correlation between being super active physically and developing the symptoms?  Maybe we can throw age into the equation as well.  Perhaps when we were younger and very active, our bodies would compensate somehow, but as we get older, it is harder for our bodies to compensate for the hole in our hearts???  I have read and heard from my doctors that many people start developing symptoms in their late 30's or early 40's.  Some of you may have started having symptoms around this time, but were not diagnosed until much later because you thought your symptoms were just part of the aging process.  I know that if my symptoms had not developed so suddenly and my health had not started deteriorating so rapidly, I would have probably just chalked everything up to the aging process and left it at that.  I just wonder if there is something to this idea I am having.
 
I don't know how active some other members have been, but I know that some of you have 4 or 5 children, like Mamanuss for example.  I have read that the whole process of pushing, lifting, etc.  causes more of the "saline bubbles" to move from one side of the heart to the other (I know we've all heard of the famous Valsava Maneuver).  Hence lifting weights, children, and generally being more active would make more blood go from one side of the heart to the other and can thus exacerbate the condition and/or the symptoms.  Hmmmm.....
 
My partner and I were discussing this the other day and he compared our hearts to engines.  He said that it's as if you have an engine and after a while if you push it too hard it will start to fail.  I said that it wasn't so much the pushing too hard, but more that the engine is defective to begin with.  So we have an engine that is defective, and then some drivers push the car engine to its limits because that's what we like to do (we like to race!) or what we have to do (we have 5 kids!), over a period of 30 or 40 years.  Isn't this engine more likely to falter sooner than an engine that is pushed too hard but is not defective, or one that is defective but is not taken for long hard drives and sits in the driveway most of the time?
 
I hope you will help me think this through.  Who knows, we may be on to something and we may be helping others who will come after us.  With more answers, hopefully their journeys will be a little easier than some of ours have been!
 
I am sending lots of positive and bright thoughts in everybody's way.
 
Greenhope

Arthurg72
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Date Joined Dec 2008
Total Posts : 2
   Posted 12/25/2008 3:59 PM (GMT -6)   
I've been thinking the same thing! I just had my PFO closure done 2 days ago. It was around 25mm.
Like you mentioned, I fit your description exactly! I am very fit and I have been extremely active throughout my life. Playing all kinds of sports, contact sports, karate, gym (cardio and heavy weight lifting) 3-5 days/wk for years, hiking, rock climbing, running and so on... I'm 36 years old and my symptoms started 2-3 months ago. You definitely maybe on to something. The only thing that I don't get is if I had this since birth, why haven't I seen symptoms until now? Maybe our bodies do something up until a certain age preventing this risk?

greenhope
Regular Member


Date Joined Oct 2008
Total Posts : 113
   Posted 12/27/2008 3:21 PM (GMT -6)   
Hi Arthurg72,
 
I have wondered about that myself and the only thing I can think of is that other parts of our body and even our heart compensate when we are younger.  But, once everything starts to age, the defect becomes noticeable because other body organs are not able to compensate like they used to.  I also have this ugly image in my head of our hearts stretching downward as we get older, as everything else in our bodies does, and thus perhaps the hole also stretches and becomes more pronounced/bigger as a result?  These are just ideas and unflattering images!  Hopefully some super doctors are already researching some of these things and life will be easier for future generations of PFO/ASD sufferers.
 
Thank you for sharing your thoughts,
 
Greenhope

Michael's Wife
Regular Member


Date Joined Aug 2007
Total Posts : 150
   Posted 1/27/2009 7:13 AM (GMT -6)   
I agree with you, Greenhope. I had relatively minor DCS (decompression sickness) symptoms over the years but they got worse as time went on and I eventually ended up in a hyperbaric chamber, presumably from nitrogen bubble passing through my atrial wall. I think my PFO got larger as I aged and became more of a risk factor. I've also read that this does happen as people get older.

Nancy Poplar
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 1/27/2009 7:05 PM (GMT -6)   
i have been reading the healingwell pfo posts for three days...sucking what info. i can get. at one time feeling, "wow, i am not the only one" and at other times feeling, "holy heck! i am not sure if i can go through all of that." (small stroke 9/2/08) much easier to ignore the fact that i have a pfo and just continue to run races and triathlons. i do agree with the fact that there must be a link with an active lifestyle. but if we can see it why not the doctors? why aren't they making the connection?
anyway, 2 weeks ago i ran my first marathon and went to see my cardiologist the week before i ran it...had not seen him in a year. basically, he thought i was crazy to run the race with the stroke/pfo issues and told me he was now going to recommend the procedure if i was going to continue my lifestyle.
so basically, you all are scaring me to death about having the procedure. i am fine (but for being tired alot...could just be effort and age). i want to get off that table and be able to resume racing within a month. i don't want heart palpitations, "chicken bones" in my throat, numbness, headaches, dizziness, etc...
why did you do it? being athletes...why did you decide to risk that? it is such a joke to have to choose between a possible stroke that could kill you or never even happen again (american heart assoc/amer. stroke assoc. call it the 2 stroke rule) and a procedure that is not a sure thing, could cause other issues and basically places a foreign object in a vital organ. it is russian roulette either way.
anyway...my two cents, i guess...
hope i wasn't too confusing. greenhope, kudos to you for keeping up with your postings...you have been a great help.

*i have read that dehydration can be an issue with clotting...i watch that b/c i dehydrate easily. considering they never found any other answer for the stroke i am going with that. pfo's do not cause strokes..considering 25% of the population walks around with them but 25% do not have strokes. so, that speaks to the athletic factor.

greenhope
Regular Member


Date Joined Oct 2008
Total Posts : 113
   Posted 1/27/2009 7:50 PM (GMT -6)   
Hi, Nancy, and welcome to this forum.  If you read some of my first posts, you will realize that I wasn't choosing between being active or having an implant put in my heart, I was choosing between life and death.  I had all sorts of complications and the weeks before my procedure I sometimes was so tired I could barely get up from bed.  This was no way to live.  I knew something was seriously wrong and after months of testing and finally finding doctors who were willing to listen and take me seriously, we discovered the problem.  I also felt like a walking time bomb waiting for a more debilitating or fatal stroke to happen.  The PFO does not cause strokes but it enables them because clots can get through the hole and to your brain.
 
I know I made the right decision and I have not looked back and never will... I truly do believe that in my case I saved my life.  My health was deteriorating very rapidly.  I was not playing russian roulette with my heart.  I take my health and my life very seriously.  All those heart palpitations, "chicken" bones, dizziness, etc. were worth it for me because today I am feeling healthier than I have felt in a year and I am getting better and better everyday.  This was not elective surgery.  If your case is not so serious, then you should not have the procedure done.  If you do, you may or may not be able to go back to exercising in a month.  It all depends on how healthy you were before the procedure and how quickly you heal after.  In my case, by the time they figured out what was wrong, my heart was already failing and I had borderline pulmonary hypertension.
 
Doctors are not the geniuses some people think they are; they are like the rest of us with a little bit more knowledge about medicine.  People like us with PFOs and symptoms are just now becoming more recognized and understood (I think in the past people like me would have just died of a stroke or heart failure and they never discovered the true cause).  Thank goodness debilitating or fatal strokes can now be prevented with the PFO procedure - if the PFO is diagnosed in time.  I truly believe doctors have not seen the correlation or maybe some have, but have not had the desire or funding to perform required research.  Unless they have the research to back them up, they cannot go around making claims (we can because we are not doctors).
 
There may be unforeseen side effects with the PFO procedure that we don't know about and won't discover until years later.  I will cross that bridge when I get to it.  For now, I am really happy, ecstatic in fact, that I crossed the one that was slowly killing me.
 
I wish you much luck and wisdom in making your decision.
 
Greenhope
 

Nancy Poplar
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 1/27/2009 8:44 PM (GMT -6)   
greenhope...

i did miss your beginning...3 days and many different stories.
how active where you before your heart started to fail (you were saved so you could help all these other people through a confusing, scary time)? what were your early symptoms? was it a slow process before you realized things were really bad? now, do you feel like you can get back to participating fully in sports again?
i am going to go back and read your story...

np

01IRISH
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 1/28/2009 4:07 PM (GMT -6)   
Hi! I am new to this site but truly ecstatic that I stumbled upon it. I had  an ASD and PFO closure performed in May of '07, I had had multiple tia's for quite a few years, the pfo was discovered after the birth of my 1st born, the tia's had subsided for a few years then came back with a vengence...since the procedure itself I have had one tia, but feel absoltely awful, I have no energy and I too was extremely active and athletic...I truly feel like I am 90 years old and I am only 45!!! My concern is of course with the doctors and their mentality, I have had echo's done every 3 month's which show a totally normal heart, when I had first had my very 1st episode the only way they found the pfo was by performing a TEE and bubble contrast, so, why would the dr. only do an echo??? I am so darn frustrated, I despise complaining and I am certainly not a hypo-chondriac. I hope and pray to get some feed back from any one in this forum ,all advice will be greatly apprecialted!!!Thanx for you time and looking forward to your reply

greenhope
Regular Member


Date Joined Oct 2008
Total Posts : 113
   Posted 1/28/2009 10:11 PM (GMT -6)   

Hi, 01IRISH, and welcome to this forum.  I can only tell you what I am planning to do and what I know; perhaps this may help in making your decision.  I think they only do the echo because the main concern for them (doctors) is to make sure the PFO is closed.  The echo provides a lot of information, but the TEE provides much more.  My failing heart valves (mild & moderate) and borderline pulmonary hypertension were only detected when they finally did a TEE (after much persistence from me!).  So, at 3 months after my PFO closure, this coming Monday, I am going to let them do the echo because the main thing we ALL want to know right now is whether the hole is closed or is at least making good progress.  At 3 months this is all I can expect.

However, at 6 months, I will "nicely ask" first, but DEMAND if necessary, that a TEE be performed.  I will try to reason with my cardio, who is a wonderful and understanding person, and tell him that I need to see that my heart is functioning better, i.e., valves are working better, the right side of my heart is no longer overworked, no more borderline pulmonary hypertension, etc.  All those wonderful things that only a TEE can tell you and that will hopefully have improved after 6 months.  I hope that as an intelligently thinking cardio doctor, he is already planning to do this so I won't have to persuade him.  But, if I need to persuade him, I will and if I need to demand the test, I will do that as well.  It is my right as a patient to get the treatment I think I need and I will take a copy of my first TEE in case he needs a reminder of what my failing heart looked like!

I hope you are able to demand the same (because of your name I am not sure whether you live in the US or Ireland).  If you live in Ireland the process may be different.

Good luck!

Greenhope

 


Tom H
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/7/2009 1:43 PM (GMT -6)   
I had a stroke two weeks ago and am awaiting PFO closure, any tips people?

Tom H
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/7/2009 1:51 PM (GMT -6)   
I am fit and I have been extremely active throughout my life. Playing all kinds of sports, contact sports, karate, gym (cardio and heavy weight lifting) 3-5 days/wk for years, running and so on. I'm 41 and just had a stroke two weeks ago, doctors say its from a "PFO" and some bloodclot that made it to the brain through the "PFO". I'm now waiting for a "PFO" closure to be performed, some insight on this would be great. Thanks 

CatMom5
Regular Member


Date Joined Apr 2008
Total Posts : 88
   Posted 2/8/2009 11:37 AM (GMT -6)   
If you have an echo done make sure it is an echo WITH bubble study. A plain echo cannot tell if the PFO is still open.

Tom H
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/8/2009 1:45 PM (GMT -6)   
Yes, Thats the Echo test that was done in Boston at Brigham and Womens Hosp.

CatMom5
Regular Member


Date Joined Apr 2008
Total Posts : 88
   Posted 2/9/2009 8:58 AM (GMT -6)   
Hi Tom,

What kind of tips are you looking for? Each Doctor seems to have small differences in procedure and device used. My PFO/ASA was closed with a Gore Helex device in April of last year. I had no drugs during my procedure although I sincerely wish I had. I have heard that some people were totally out for the procedure. I was placed on Plavix and 325mg aspirin afterwards and continue on these today as my hole has not closed totally yet. My Doc does follow up echo's with bubble studies at 6 months and one year but I know others do them at 3 months and 6 months and some discontinue Plavix at 6 months or just have 81mgs of aspirin. You need to discuss with your own Doc as to what he exactly does. Some people come through the procedure with flying colors and have no problems what so ever and are back at work after a week or two. Then there are others that develop problems afterwards and it takes them much longer to recover. It all depends upon how your body and heart reacts to the device. It seems to me that the Doctors don't like to talk about possible after affects and usually just tell you it will be a breeze. If you read through the PFO threads on here you will see just how differently people react to the device and procedure.

greenhope
Regular Member


Date Joined Oct 2008
Total Posts : 113
   Posted 2/10/2009 2:37 PM (GMT -6)   

Hi Tom D and welcome to the forum.  I would also encourage you to read the PFO closure threads where you will get much valuable information on PFO closure procedures.  I know they helped me a lot when I was going through that process.

Greenhope


Tom H
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/11/2009 2:08 PM (GMT -6)   
Thank you CATMOM5 and greenhope for the info. I am still in the thinking stage of the best way about his thing. Most people I've talked to tell me the cardioseal is the way to go and stay away from the open heart sergery if you can help it. What do you both think?

CatMom5
Regular Member


Date Joined Apr 2008
Total Posts : 88
   Posted 2/11/2009 5:35 PM (GMT -6)   
I'm really not a good candidate to answer you Tom. I was one of the unlucky ones to experience problems with the procedure and afterwards. It will be a year for me in April and as of my last echo I was still not closed. If I'm still not closed at 1 year then I may very well have to make that decision. Looking back on what I have been through if I had to do it all over I might very well choose the open heart surgery. There are many people though that have gone through this with no problems what so ever so you can't base your decision on me. I think the odds are more in favor of no problems at all.

greenhope
Regular Member


Date Joined Oct 2008
Total Posts : 113
   Posted 2/15/2009 1:19 PM (GMT -6)   

Hi, TomH.  Most of us here can only speak from our personal experiences.  My PFO was closed via catherer and at my 3 month echo the cardio told me that my PFO had closed.  So, my advice to you would be to have the catherer closure if you can, since this is the less invasive of the 2 options. 

With the catherer procedure, the doctor will decide at the time of surgery which implant is best for you.  The 3 most commonly used are the Gore Helex, Cardioseal and Amplatzer Occluder.  In my case, I received the Cardioseal implant.

I wish you much luck and wisdom in making your decision.  This is a difficult time for you I am sure (many of us here have walked down that dark alley).  Just know that we are here to offer encouragement, support and information from our personal experiences. 
 
Greenhope

Tom H
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/20/2009 8:49 AM (GMT -6)   
I saw my Doc on Wednesday he told me he's not 100% sure that we are dealing with a PFO or ASD so he made an appointment for me to have a TEE. "Any insight on this would be nice" Thanks

CatMom5
Regular Member


Date Joined Apr 2008
Total Posts : 88
   Posted 2/20/2009 9:52 AM (GMT -6)   
Hi Tom,

I was out during my TEE so for me it was a piece of cake. The worst thing for me was the taste of the nasty spray they put down your throat. Also afterwards you may have a mildly irritated and sore throat.

rf1
Regular Member


Date Joined Jan 2009
Total Posts : 31
   Posted 2/22/2009 10:41 PM (GMT -6)   
Tom H - I was out for the TEE as well, and I think I would request it! You should read Teddy B's book ( Patriot's football player), " never give up" if you have not already. I found it helpful and my doctors are from Boston as well at mass General. I had my pfo closure 6/2008 and things went fairly smoothly. Boston is one of the best places in the world to seek top medical care.

best of luck - RF1

Tom H
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/27/2009 8:02 AM (GMT -6)   
Thanks rf1 and CatMom5, I had my TEE yesterday it was a piece of cake. I was told that it is a "ASD" not a "PFO".

dinby
Regular Member


Date Joined Feb 2007
Total Posts : 87
   Posted 2/28/2009 3:58 AM (GMT -6)   
I thought after closure everything would be great, my life back and all that...... my blood pressure for the last few weeks is around 98/160 (that was yesterday) I had a CAT scan yesterday to see if I am having TIAs but that wasn't clear so now I am waiting a MRI and 9/3/09 I will be wearing the heart monitor for 24 hours then a scan and after that it will be an echo!!!!! I was starting to ride my horse and build my fitness back up. Like many on this forum I have always exercised (extremely in my case having horses!) but 2 years ago that all changed. So maybe Greenhope you have hit on something?
www.tonette.co.uk
 
run wild run free


greenhope
Regular Member


Date Joined Oct 2008
Total Posts : 113
   Posted 3/3/2009 9:27 PM (GMT -6)   
Hi Tom H,
 
Yes, I strongly recommend reading Tedy Bruschi's book.  I am not a football fan myself, but he speaks from the heart and identifies with so many of us who are going through this rough period in our lives.  I found his book very inspiring and encouraging.
 
He also had this great quote in the book that will always make me cry, but is so true for many of us.  I have saved it, it's from Eleanor Roosevelt:
 

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face.  You are able to say to yourself, ‘I have lived through this horror.  I can take the next thing that comes along.’  You must do the thing you think you cannot do.”  Eleanor Roosevelt       

 

I went to see my neurologist today, and he was so genuinely happy to see me doing so well (there's an awesome doctor for you).  Then, he said I should go out and celebrate with my partner, because life is so full of surprises.  And we should be so grateful for the opportunities we get in life (I think he meant second chances in my case).  For those of you who are religious, he went on to say that God is so great and he gives us so much to be grateful for.  He said, go out and celebrate with your loved ones this wonderful moment in your life.  It was so sweet of him to say these things to me.  As a neurologist, I am sure he is all too familiar with the fatal or debilitating effects of strokes, so he was so grateful to see a once again healthy patient who was able to "bite the bullet" so to speak.  But, what wonderful, inspiring words for a doctor to say to his patient, don't you think?  I feel so lucky to have found a wonderful group of doctors who truly care (the second time around, of course, after much searching).  Life is wonderful, and I will be thankful everyday for still being here to enjoy it.  I am eternally grateful to all the great doctors who helped save my life.

 

Greenhope


Tom H
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 3/12/2009 11:56 AM (GMT -6)   
This is getting crazy, after the doctors got together and looked at my TEE they changed there minds again. They now told me that I indeed have a "PFO" not a "ASD", they said," Its larger than they normally see so they thought it was an "ASD". Problem is my doctor tells me it should definitely be closed but the US government won't let them perform the "PFO" closer with a device unless you have two "TIA's" or more. Has anyone else run into this brick wall? I'm starting to lose my mind over this whole thing.
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