PFO closure and the runner/athlete

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angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 4/1/2009 12:03 AM (GMT -7)   
Hey everyone, I've been surfing through and trying to find info. I'm not going to tell my whole story right now because it is LONG and complicated like most. My biggest question/concern is that I am a 33 year old female/mother/athlete. I am not competitive anymore however I have recently transitioned from sprinter to distance and am looking forward to running a marathon. An example of a work out of mine is 6-9 mile run (9 min pace) and then in the pool for a mile. I will speak with the surgeon (interventional cardiologist) on thursday now that all my docs agree that closure is the best way to go for me. Are there any of you out there who have had this procedure and are running/cycling/swimming like before? I will obviously ask all of this during my appt. I just want to hear from real live people. Thank you for any information.

theresa28
New Member


Date Joined Apr 2009
Total Posts : 1
   Posted 4/3/2009 1:17 PM (GMT -7)   
 I am having my PFO closed friday the 10th. i will let you know what it is like. Of curse anything is better than TIA's and the stroke i had in Feb. I had a hard time trying to get info on it as well. I hope to no longer have migraines after this. So if you are interested in closing it I would say go for it. If you have any questions on PFO's I will help if I can my email is theresa.caywood@autoinsuranceexpress.com
 
 

Nancy Poplar
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 4/10/2009 7:34 AM (GMT -7)   
angielov- I am also a female/mother/athlete. I had my pfo closure done 7 weeks ago. My story is similar to many you will read...adult athlete, training for triathlon, has a stroke, find a pfo, etc. I waited over a year from the stroke before I had the closure procedure. It was actually when I told my cardiologist I was running a marathon that he said if I was going to continue to do marathons and triathlons I needed to have the closure. And frankly, my body was telling me the same thing...I had slowly become more and more tired after each event and each run I would do...breathing was slightly labored.
So here I am 7 weeks out and I have been running for the last three. So far everything has gone well. A little heartburn feeling and soreness at the incision sights (both legs) and being tired for about a week. I am very fortunate. I do have a tendency to push myself too far. After the stroke I was out running 5 to 6 miles by the second week...in hindsight, not smart...just alot of wear and tear on my body that needed rest. So I told myself after the procedure I would be a better patient!
Anyway, I am currently up to running 2.5 miles and walking 2 in one workout. I feel ok...somedays more tired than others. But for my sanity and health I will continue to move forward with caution. I wear a heartrate monitor and try to keep it within an acceptable range. I am hoping to be racing again by July (will have the "3 month" visit at the end of May). I would love to have the strength to get out and do a 6, but I know it will come with time and I just have to listen to my body and be smart. You are an athlete, you are use to "listening" to your body...if you do that I am sure you will be back before you know it You are young and athletic... :-) that is a plus on your side. I plan on looking back in July and realizing the last 3 months of not running like I wanted to was just a "blip". My best to you...

angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 4/10/2009 11:32 AM (GMT -7)   
thank you so much for your response Nancy! The information you gave is very helpful, especially about how you were becoming more tired after each event. I need my exercise to feel better and lately it's been wearing me out so bad I keep getting sick. I'm so exhausted I can hardly get out of bed on some days. Your story is very similar to mine. After my first stroke about three years ago, I got right back to running because it was the only thing I knew how to do. I had a leg limp and everything but eventually I pushed through it. Cognitively I am not the same. I have a difficult time with linear thinking and executive tasks such as organizing and following directions. It's been really difficult for our family to recover from.

I am also somebody who pushes too hard. And my new cardiologist said she would sleep better at night if I had the procedure done. In a nutshell - because the whole process has taken about three years. I also have committed to be being a better patient after this procedure as I want this thing done RIGHT!! It's nice to hear that you are back at it. Are you nervous? I am afraid that I will be fearful when I go back. I am so encouraged by your experience though and it helps me to think that I am making the right decision. Keep in touch as will I! Angie

Nancy Poplar
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 4/10/2009 4:10 PM (GMT -7)   
Angie-
Yes, a very similar story, down to my doctor telling me that while I ran my marathon he wouldn't be able to function! I am so blessed with my cardiologist and it sounds like you are too. Somedays I am amazed at the journey this has become, and in a positive way. The people I have met and who have risen to help and aid blow me away. In a weird way this has been a gift.
But enough philosophizing...I have nothing horrible to say about the procedure. I did all my research and then some. I figured as long as I am getting my body where it should be (healthier heart) then I can handle anything. The 3 to 6 hour bed rest was tough on me...I have a weak lower back. I suggest if you have an ipod you bring it...it helped keep my mind off my back. I also brought my girlfriends :) My husband is great, but my girls knew what to do!
If you have any questions, I would be more than happy to share more of my experience...but search this sight and blogs...lotsa info. Check out Dr. Sorenson's website ( I think that's his name). The site had a ton of info I found very helpful. The more informed, the better off...
As far as being afraid, hmmm, most of the time I am not. Just like after the stroke, you question every ache and pain. I never had headaches and still don't, per say, but when I get a pain in my head I still wonder. That may be with us forever, but I also look at it as an early warning device :) When I get a feeling near my heart area, I wonder, but remain calm and everything turns out fine. So, I guess I am a little fearful, but running is what I do...you know what I mean?!
On my first run after, I invited all my running friends and called it my "Grand Re-opening". They ran the 1 miler with me it was great (I so wanted to do more)! Surround yourself with positive people and when you go out alone, bring your cell. Angie, you are going to be fine and back before you know it :) I see it as a chance to reinvent my running self...become a better athlete:)
I have not started swimming yet, but that is just b/c of opportunity, not b/c I am not allowed. The outdoor cycling is killing me (doc is afraid of a fall...and I agree, if that happens it wouldn't be good). I think next week I will throw some spin classes in, just to get those muscles working and ready for the road, but very slowly...with caution.
Let me know when your procedure is...I would love to send some positive thoughts your way! And again, i will be happy to answer any other questions. The unknown can be scary, but the more informed the better...

angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 4/13/2009 5:36 PM (GMT -7)   
so I just got back from my appt. with the surgeon and I really like him alot. My husband came with me and we asked MANY questions. He explained that this procedure is only done on a very select and specific grouping of people and that in order for him to feel comfortable about doing it, he still needs more information. The last piece from him will come from my neurologist (who is one in the camp of thinking I'm "migrainey") who has only seen me twice. He will probably go and speak with my original neurologist as well. He actually called my cardiologist while we were in the appt and they both agreed that I did not sound like I was having migraines and she was absolutely certain that this procedure needs to happen. At which point he said that he needed to see the original tape from the echo (which had been done by a yet DIFFERENT cardiologist) and then determine whether he needed to do another one. So, getting closer.

He also said I would be running in a week and pretty much doing what ever I wanted to. Out of everything I've read and heard, this doc made it sound the most simple and with the most easy recovery. They've done about 200. They haven't had any of the serious complications I've read about and asked that I would please not be the first - ha ha. Plavix and aspirin for 3 month.

May I ask where you had your procedure and who your surgeon was?

Nancy Poplar
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 4/13/2009 8:40 PM (GMT -7)   
Angie
I went to NY Pres/Cornell. My surgeon was Dr. Geoffrey Bergman.
Some quick background...
I felt I knew everything there was to know about the surgery and the possible after effects. I had asked all my questions and understood every one of these cases can be slightly different, very individualistic. But I had this need to know more about my surgeon. I have a friend who worked for Dr. T. Feldman (PFO surgeon) @ Northwestern....called her and the first thing she said when I told her I was going to have the procedure was, "I am thrilled you are finally getting this done! You are going to be out running before you know it! I have sat in on many of these, if you have any questions I can answer them. And your surgeon is one of the best." I do believe there are really great cath surgeons everywhere. I did alot of research!

Those comments calmed me tremendously. Not so much the surgeon part, but the fact my friend was so calm about the procedure. I was not lulled into believing it was "sunshine and roses, " but it helped me to hear someone I knew and trusted...trusted in the procedure.

Even the day of there where were some moments of..."Do I really trust this surgeon? I don't hardly know him..." But the cardiologist who I totally trust, trusted this surgeon...somewhat of a leap of faith! Besides, my body was telling me it was getting tired, not better, and I wasn't willing to risk another incident, not with 4 kids. And my cardio doc told me if I wanted to continue to run long distances (meaning more than 5!) then I needed to have this done. For me...I need to run to be healthy and sane...and now, to help ward off other stroke or heart issues...so, I had no choice, in my head and heart.

I also am on plavix and adult aspirin for 3 months and will be on aspirin for life. My cardio guy is very conservative and said no running for three weeks and then only 3 miles and under before the 3 month check (bubble test). I wondered what was the big deal if I felt well...he was worried about clots around the device, dehydration causing clots, and falling (can cause the device to move-not good!). I appreciate his concern so, like I said, model patient for now. Do look at the Sorenson website...some really good information.

So, moral of the story...it is up to you and your family which direction you take. Either way, you aren't alone...that is a comforting thing :-) Please keep me posted...positive thoughts your way...

angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 4/16/2009 6:14 PM (GMT -7)   
Things don't look so good right now. My current neurologist doesn't believe that I've had strokes or tia's but migraines and is telling the surgeon she advises against the procedure. Now my cardiologist is going back to my original neuro. My primary care doc called me today and says that this whole thing is complicated and that she needs more information. I am so frustrated. so so frustrated. I really feel like giving up right now. I haven't ran in like three weeks because I am so exhausted all the time. Sorry to complain, I just thought I was almost at the end and now it looks like it may continue and I can't imagine at this very moment continuing. I know it will all work out for good - just at this moment...

Nancy Poplar
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 4/16/2009 10:39 PM (GMT -7)   
angie
hold on friend! this is tough, i know. i went more through it when i had lyme disease and everyone thought i was crazy. it is so hard to keep the "fight" for your own health up, but you must...you are your only advocate, you know something is not right and you must pursue it. your cardiologist seems to recognize the seriousness of this, stick with her path. this isn't the end of it...there may be more hills to climb...
when i had lyme my primary was scoffing at it. i know it is hard right now, don't give up sister...dig deep!
you are a female athlete...we don't give up...we dig down, find our strength and keep running the path. have you tried to just go out and walk? if you are like me, that word isn't pretty...but now i embrace it b/c it is going to get me back to what i love to do. try a long walk, clear your head...i know you are bone tired, but exercise (not running per say) and fresh air can do wonders for your frame of mind.
i know it can be a lonely road and somedays you feel like it is you against the world and you are exhausted and you just need to vent...if we didn't scream, cry, kick and spit every once in awhile how could we move forward? you are allowed to do that you know...vent away!
and if all this wonderful pep talk doesn't move you to get tough and keep the fight for your health going...go up and watch those babies sleeping...we do it for them :)
i am out here...keep me posted...do your research...you are strong, you are!

angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 5/19/2009 4:41 PM (GMT -7)   
Hi Nancy- Great news!! Scheduled for procedure on the 29th of this month. Trying to manage expectations as far as how I may or may not feel after. What is your energy level like now that you are this far out?? I just feel like I have been tired for so long. It would be amazing if that improved. So grateful that the wait is over.

Nancy Poplar
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 5/30/2009 6:19 PM (GMT -7)   
i am so happy for you...you are now on the track to a better you! by the time you read this you will be home and taking it easy...yay! please keep me informed. it is like pregnancy stories...i want to hear about your experience :)
hope all is well...be kind to yourself!

greenhope
Regular Member


Date Joined Oct 2008
Total Posts : 113
   Posted 5/31/2009 10:06 AM (GMT -7)   
Angielov,
 
How are you feeling?  I hope all went well.  Please let us know as soon as you are able to.
 
I was reading your posts about getting back to running after your procedure.  You will probably be fearful when you start going back, but you will make it... we have made it through much more difficult obstacles.  The first time I started running on the beach (about a month ago), I was so nervous I cried before I took my first jog under my boyfriend's watchful eye, but I did it - mostly walking and a little running.  And about 2 weeks ago I started going back to the gym I had been going to for the past 11 years.  I hadn't been there for almost a year and I was terrified!!!  But, again, I just did it and it felt wonderful.  Once I started running on the treadmill I couldn't stop running or crying (I picked a corner treadmill so not too many people would notice the weird lady crying!).  Running is a big stress reliever for me and not being able to do it for almost 7 months was almost incomprehensible to me.  And, then my mind in its infinite wisdom reminded me of another activity I loved doing and hadn't done much of since being a mom - reading!  So, try to do things that you enjoy and that you CAN do while you recover.  And you'll see that one day your body will tell you, "it's time," and you'll hit the pavement with all the passion and energy you have been accumulating for just such a moment.
 
You can do it.  All your PFO pals are supporting you!!!
 
Greenhope
 

angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 6/1/2009 4:28 PM (GMT -7)   
Yippee!! All is well. Thank you Nancy and Greenhope for your support. If you happen to be interested in details (I always am) Please read on...

I was first up friday morning. surgeons came to see me before hand. When I asked which device they would use, they said it would probably be the Gore-Helex with me but wouldn't know for certain until they got in there. I was very proud of myself as I was pretty alert for the whole procedure. Definitely comfortable and a little out of it but awake enough to look at the screen and to ask them "how big is it??" I also had to "bare down" at certain times and hold my breath at others. They said the hole was about one centimeter which was ten times as big as the TEE (trans-esophageal echo) showed. However they were prepared for this because the TEE doesn't always show size and dimensions accurately. They did end up using the Gore device called the Helex and I am now a card carrying member. I keep a card in my wallet which shows model and serial number of my implant.

I came to find out that mine was a "good size" hole. From what I have read, out of the 20 - 25 percent of people who have this, only 6% are as large as this. So, that being said, I am SOOO grateful that this procedure was done. The first cardiologist I saw said it was barely a millimeter and not even worth mentioning. I knew something was very wrong with me starting over 3 years ago, especially with the onset of the complications of my second pregnancy. No one could figure out why it was happening. It's scary to think what would have happened if we wouldn't have caught this. I am very grateful to the doctors who were committed to getting to the bottom of my tia's/strokes, colitis, and other neurological problems/brain lesions.

There were alot of people in my operating room. Students and observers behind the glass. Dr. Kar seemed to be teaching. Also someone from the GORE company who makes the helex was there. I learned that it will take about a month for my skin to completely bond and close over the device. The device is made up of gore-tex and is very bio-friendly (meaning that my body will adapt well).

My leg had a little bit of a hard time closing up. I had to stay on my back flat for about ten hours (no lifting the head) because of bleeding. Over all the experience was very good. I have had many hospital experiences, even at Cedars-Sinai (the hospital I went to) and this was by far the best experience I've had. The 6th floor cardiac ICU nurses are really good. Everybody really knew their stuff. I will see doc this week in his office. I was told that they are one of the only teams in the world that do this procedure the way that they do. No TEE or intubation at the time of the procedure. It really is quite amazing the ease of it. No echo even on discharge!! I was amazed.
I am still in bed alot as I am taking all of the rest I can get before our schedule goes back to normal. My husband is taking a couple days off of work to take care of the kids.

I have had a terrible deep cough since the day of the procedure which seems to get worse at night. It scares me a bit to be coughing as hard as I am - both because of the catheter site and the implant.

and on a final note - I have gained so much weight over the last several month from not exercising and "emotional eating" that I feel really uncomfortable. But hey, I am sharing that only because I know that this is a small price to pay for having my health.

Thank you for all the support and sharing your wonderful stories with me.

Love,
Angie

Post Edited (angielov) : 6/3/2009 5:44:47 PM (GMT-6)


Nancy Poplar
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 6/1/2009 7:01 PM (GMT -7)   
angie_
congrats! job well done...it actually sounds like a carbon copy of my story...right down to the bleeding and laying flat for what seemed an eternity. i also was worried about the coughing opening up the incision...but this too shall pass. i think i spent a week sleeping on the couch b/c i was fearful of movement in the bed opening up the already precarious incision.
but here it is 3 months already...going in for my follow-up this week or next. i am a little fearful it won't be closed, but pushing that out of my mind and thinking positive.
the weight will come off once you are feeling yourself and somewhat active again. everyone is so kind to drop of meals and dessert-which was my downfall :( life will get back to "normal" soon enough ;)
angie, i am so happy for you. take strength in the fact that you knew your body and you fought for answers and for your health and you did what you was right...good for you!
best of everything and keep me informed on your progress. rest, b/c you'll be back to running before you know it!

superheart
New Member


Date Joined Apr 2013
Total Posts : 2
   Posted 4/8/2013 1:06 PM (GMT -7)   
Hi All,

I am new to this site but not new to heart issues :( I have RVOT and had an ablation of my rt ventricle 3 yrs ago. I am 40 and an avid athlete. My RVOT was found when I would pass out during races. After the ablation I was feeling great and fully recovered....yes it took 10-11 months to get back to where I was which was frustrating but I had so many wonderful friends who walked/jogged with me on my road to recovery. I fully can relate with greenhope....I was scared to death to run after my procedure and also cried because I was so happy to be able to continue running.
Well, that was the short story and now for about a year, I have been struggling big time! I am so tired (which was one of the most annoying symptoms of my RVOT) lightheaded all the time and have such bad shortness of breath. Before, my ablation I was about a 1:45 half marathoner and 1 yr post ablation I was back to about 1:50. Please don't get me wrong....I am so grateful that I can still run that I really don't care how fast I am running but the frustrating part is that it no matter my speed running is sooooo hard and miserable for me. Running/exercising has always been my outlet and running with my friends has always made everything better. I can barely breath at an 11 min pace and forget about carrying on a conversation. When I spoke to my cardio he sent me to the pulmonary dr and they tested everything and my VO2max was amazing so it was not my lungs. Next, during a stress test my O2 dropped to below 80% and I had to stop since I almost passed out. In Oct, I woke up in the middle of night with left arm paralysis. I called my cardio and was sent to the Neuro for an emergency MRI.....yes he thought I'd had a stroke. Nothing on the MRI but it could have been an TIA or massive migraine. Oh, yes I have had consistent migraines with auras all my life and just have grown to live with it....I am a suck it up and deal with it type of person. I've also had left arm weakness and have found that I can't open jars anymore. Bottom line is that I have become pretty much exercise intolerant. I can barely keep up with my husband on a walk and I am usually the one yelling at him to move it :) I recently went and saw another cardio who thinks I may have PFO and given all my symptoms. I was shocked....um after ALL the tests I have had trying to figure out what is going on with me. I would have thought they'd have found it. Apparently TEE is the way to go so I am now trying to get that scheduled.
What I was wondering is if any of you had desaturation of your O2? and what were your symptoms before they figured it out?
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