PFO Closure Part 2 of 2

Posted by Katieboot on 2/25/2010

 

Hi all:

I am headed back to cardiologist tomorrow to pick up a monitor to wear for 24 hours.  My heart rate continues to register high, even when I am not exerting.  I am about 10 weeks out from closure, did anyone else have this experience?

Thanks,

Katieboot

Posted by Beckdo on 2/27/2010

 

In October 2009 I suffered a stroke, left sided which took until February 2010 to diagnose. I have had multiple MRI's, MRA's, CTA's, CT's, echo, etc. etc. and finally the middle of this month I went to a cardiologsist who did the "bubble test" and found the "hole".  My next visit was to another cardiologist to talk about repair. After reading up on this on the internet, at this time I have decided to NOT go ahead with closure, at least for now.  It sounds to me as if the risks are greater than the benefit, but yet, knowing you have a hole in your heart and have had 2 strokes is majorly worrisome and always in the back of my mind.  The doctors also wanted to put me on Pravastatin 40mg. and Coumadin, which I did not take.  I am going to stay on my 325mg. aspirin and my blood pressure medicine and I have added Red Yeast Rice to hopefully be a "natural" blood thinner.  My cholesterol is not high, but they want to keep it that way. I have bad cardiac history, my father fell dead of a heart attack when he was 35 years old. So...... I am so totally torn, worrying I will have another stroke at any minute, but then I just don't want to bring on other problems with surgery, there are so many things to consider, I was told you could have a stroke during the procedure and also there is no guarantee of not having another one even with the repair, I think of the risk of staph and other complications.  As for the Coumadin and Pravastatin, all I have heard about them is HORRIBLE, but I know they prescribed them in good faith as that is what they have been trained to do for patients like me.  I am not a non-compliant patient up to this point, but I have balked at the procedure and 2 new medicines.  The Lord gave me enough mind to make this decision on my own based on what I know about it, I am praying he will see me through this.  Any thoughts like mine????

Hello all,

Something positive...

I had my PFO closed 16 months ago.  I went to the cardiologist after 1 month, 3 months, 6 months and another 6 months.  Today was my second 6 month appointment and... I have a clean bill of health! My PFO has healed beautifully and successfully my doctor says.  More importantly, I have recovered completely.  I am running 4 and 5 miles again, and I'm still building up stamina and endurance so I can do more.  I feel really great!  I used to post here extensively when I was sick and recovering, but have not posted for a while.  I have some minor permanent damage to my left ear (a little hard of hearing) and I still sometimes mix up words or use similar words from the same context but that are not accurate.  I think this is all from the small stroke/mini-strokes or whatever I had, but it's something I can live with.  The important thing is that I feel great and I have my quality of life back.  I wanted to share this with all of you who may be facing this very difficult journey many of us have travelled through... I got to the end of the tunnel and I am seeing beautiful light again!!!  My cardio thanked me for doing my part in my successful recovery.  I thanked him for saving my life and giving me back my quality of life.  Today is a wonderful day for me.  I don't have to see the cardio again for another year.  The neurologist says he does not need to see me anymore unless I sense something is wrong.  The pulmonologist told me the same thing a few months back.  Those 3 doctors saved my life, because they listened and they cared when so many others didn't. 

I wish everyone much luck and wisdom in making your decisions.

Greenhope

Hello- I"m 4 weeks removed from my closure and I'm really starting to feel like myself again. I meet with the cardio this friday for an echo for a follow up. I'm hoping I don't have to wait until 6 months to hear that the hole is closed. After the procedure, I was told my shunting was minimal.

I'm looking forward to going to the gym again. The gym used to seem like a chore but since it's been taken away from me for the past 6 months I'm craving to go back. I've always been a free weight guy but this whole experience has proven how important adding cardio is to your workout. Plus it will get me in shape for the next season of Jersey Shore...kidding of course...

One recent event came from a trip to my Neuro. My ldl cholesteral is 98 and she wants it under 70. If I can't get it down on my own, I'll be forced to go on a small dose of statin. Don't want to do that. She just wants to be safe eventhough my cholesterall didn't cause my 2 mini strokes.

Been eating a lot of granola, berries, fish oil pills, flax seed, yogurt and really cutting down on the junk food..chips, cookies, nachos, pizza, burgers, fries....all things that I've been eating all my life. Always been a thin guy so eating what I want has never been a problem. I"ve been adjusting pretty well and feeling pretty good. Couldn't cut the coffee out of my routine..somethings you just need!!

I look forward to sharing some GOOD news with you all this friday.

JP

 

Thanks Kitt...a lot to deal with for a 35 year old guy..but I certainly don't take life for grant like I may have done before. Life is truely too short.

For one so young you are very wise as you are right on, life goes by to quickly and we need to live each moment to the fullest. I will keep you in my prayers and know I wish you peace always.



Katieboot



Great info and I am glad you are going to make taking care of yourself and taking life a bit easier a priority. I am just so very happy your tests were normal. Do stick with us.



Gentle Hugs to all,



Kitt

Well, the results are in after my 5 week echo. I still have some shunting but per my dr. only 3 bubbles got thru when I bare down. For the next 5 months, I need to continue to take it easy...ugh..My restrictions aren't that bad but not the clean bill of health I was looking for. I can go back to the gym but need to be careful. No heavy weights over my head which is totally fine. I can lift light weights and do light cardio which was great to hear. Being inactive since sept has been tough.  I'm not in any danger of displacing the device and they are not worried about any clots forming and passing thru the hole which caused my two strokes. I'm on a full dose of asprin daily to thin my blood and with the hole closing, I'm not in any danger of another clot passing thru. I'm being told this is precautionary. I already feel like 2010 is going to be a good year. I wish you all well with your recovery and search for answers. This PFO stuff is still so new but the treatments have come a long way in little time. I really feel lucky that my 2 strokes didn't leave me with any visable effects, other than ADD...which I think I've had since birth anyway!!! At work I feel as sharp as ever, maybe because this journey has proved that I can overcome some pretty big obtacles after initial doubts about ever being the same. Something to be said for surviving 2 strokes and jumping back into fast paced work enviroment and each day I feel stronger physically and mentally. I thank the Lord every day and so thankful to have a wife that is as tough as they come. She made every appt. for me and got the wheels from my first appt to the PFO closure....by my side on every appt and there to tell me it was all going to be okay...even though she had no idea. She's very persausive. Oh yeah, all this while she stayed home with our two young children. Don't underestimate the support system we all have around us and the toll it takes on them as we fight thru the tough time. 

 

Kitt- your husband will be in my prayers for a fast recovery.

JP

Hi all:

Just a quick update and a quick question for all folks who have undergone PFO closure.  I am continuing to feel better and better.  I went for a slow 6 mile run yesterday and kept my heart rate under 150 (progress:)

Last time I went in for a follow up with my neurologist, I mentioned that I thought a support group would be very helpful for folks considering closure and recovering from closure.  My neurologist asked me to consider running it (I'm a clinical social worker).  I am curious if you would have attended 1xmonthly support group if one had been offered in your neck of the woods.

Hope everyone continues to be well.

Katieboot

Hello and I am happy to meet you. I am Kitt. I am glad you feel comfortable coming here and writing down your frustrations.



I hope your medical review goes well but the red tape does have a tendency to increase our anxiety. Try to stay in the moment and believe that all will go well.



Gentle Hugs,



Kitt

Just following up to say that my procedure went well. I was in and out of the cardiac cath lab in 40 minutes, including prep time. Doc inserted an 18 mm Amplatzer device to close my hole, which was 6-7 mm. I was told that the holes are almost always bigger than what they can see on an echo.

Anyway, I have follow up echo next month, and another one 5 months after that. On aspirin and plavix to control any clotting issues. Was out cutting grass and doing yardwork with no problems 3 weeks after the procedure.

Doc was nice enough to give me a souvenir, a picture of the device implanted in my heart. Pretty sweet.

After 2 TIAs and 1 confirmed stroke, I am scheduled for my closure on April 24th.  All I was told about recovery is that you were fine the next day.  Now that I have read all these posts, I am confused.  I told my boss I would only miss one day, maybe two if I have to spend the night.  I work a desk job, but obviously have to drive a few miles to get there.  Help!?