Know-stroke.org-Exercise Guidelines for PFO Patients Needed
The PFO Research Foundation recently met in Washington, DC for its first PFO Summit. I attended the event and was hoping for both practical and selfish reasons to get some clarity on exercise guidelines from some of the world’s top authorities on PFO. Instead, what I learned in one of the breakout sessions aimed at developing better guideline documents and educational materials for patients with PFO disorders is that we have a great deal more work to do to get better patient information out there. I reference a recent post to my blog from Sept. 28, 2010, at know-stroke.org to illustrate this point:
“I just found out I have a PFO after a cerebellar stroke and ministroke in 27 months. I am 45. Should I be scared to do cardio, how much, how long, what should I avoid? Thanks Dave, I appreciate reading something from someone who seems a lot like me.”
What should this person do? Known PFO, positive TIA/stroke and would like to continue exercising/working out. Is cardio fine? Are weights OK? What about swimming? Climbing at altitude? Diving? We know these situations may present increased risk but where do you draw the line?
Patients are turning to the web and patient forums for guidance clearly because they are not getting answers from their physicians or device manufacturers. It’s simply not enough to tell patients “you can’t avoid the valsalva maneuver*” in daily life. No kidding doc, really? Is that the best advice we can give?
I learned “off the record” after running a marathon that perhaps (running long distances) was not the best decision for me “down the road” with a PFO occluder on board. This inside information was shared with me by a physician recently after my primary cardiac physician had cleared me and stated after more than one year post PFO closure “if my legs could carry me that far and my brain was crazy enough to talk my body into 26.2 miles then my heart would be fine”. OK, so, what is safe? What should PFO patients be doing for exercise (or not doing) 1-3 weeks after closure? How about after 6 weeks? What is really so special about 6 weeks? Why not 1 year (or more)? Should every occluder device have its own post-op protocol based upon the design? Perhaps. What about exercise guidelines for known PFO/stroke confirmed without closure like the recent post on my blog I illustrated above. What about known PFO, no stroke, no closure but enrolled in clinical trial related to migraines? What about guidelines for that same patient sent home on meds or following sham closure procedure. Follow me?
[Personal Sidebar] I had contacted the device manufacturer that built my heart plug several years ago after I had PFO closure. I asked them, -NO-I challenged them to get their patient education website completed and build a useful patient resource to assist patients that were in my shoes. That was well over 3 years ago. The result: Still no website for patient education. Nothing. I’m still waiting…
Who’s to Blame??
Blame the FDA, insurance companies, poor clinical trial enrollment, whatever excuse we want to make, this is certainly not “best medical practice”, it is not acceptable and is in fact poor medical practice. As a practicing physical therapist, if I sent someone home after a total hip replacement and didn’t remind them that there were clear post operative hip precautions that they should be aware of following their procedure (and based upon the technique and specific device they had implanted in their body), I could be fired and sued if they went home and blew out their hip because I didn’t educate them. That is simply part of my job! Why are heart plugs different? The last time I checked they were still being inserted directly in the center of our most vital organ.
“Patients can’t continue to afford to be the pigs here. Patients are literally putting their “hearts on the line” and deserve so much better. When I ran the Boston Marathon in 2009 I didn’t recall any pigs passing me with a clinical trial advertisement on their bib.”-DP Dansereau
I certainly hope this post serves as a challenge to industry and physicians to be more responsible and get our collective acts together to set things straight for patients. At least that is why I continue to write this blog, and yes, industry, this blog creation was and remains my direct response to your failure to step up and do something. Truth is, I write most of my content on lunch breaks and late on Friday evenings after my responsibilities as a dad and business owner are complete. (This is at least my excuse why I frequently have typos in my posts.) I write this blog because in some way it helps patients ask more educated questions and hopefully make their medical care takers stay on their toes, at least that’s what I’ve been told. I have no financial disclosures to report, don’t know any venture capitalists, and have no potential gain if PFO closure proves to be a slam dunk for stroke prevention or migraine relief. I just own the peace of mind that I did something. Now, I must get back to my patients, and then perhaps go out for a run later this evening when I get done here at work.
Or should I ? Who knows? I’d love for you to comment here if you do….
Better Exercise Guidelines for PFO Patients
By David P Dansereau
For know-stroke.org
* Valsalva maneuver: A maneuver in which a person tries to exhale forcibly with a closed windpipe so that no air exits through the mouth or nose as, for example, in strenuous coughing, straining during a bowel movement, or lifting a heavy weight. The Valsalva maneuver impedes the return of venous blood to the heart.
Sharon Coyle is discussing. 
carol Marler, and 
Brad are discussing. 
Michele, 
Pam are discussing. 
Sharon Coyle 12:26 am on January 1, 2011 Permalink |
Original posted at fightfor7.com by Sharon Coyle (Jamie’s mom)
December 25, 2010
Hi everyone,
We have so much to share with you all in regards to a CHRISTMAS MIRACLE but let me fill you in on some background first. First and foremost we wish you all a very Merry Christmas. I”ll take you back to a couple years ago when I first heard of an e-stim machine called the walk-aide. When Jamie was in spaulding they had used a similar machine on her hand. When we heard of the walk-aide Jamie wasn’t ready for it at the time. I contacted blue cross just to ask questions and get some info about the machine and of course ended up angry with our health coverage. We are the strongest country with the weakest health coverage for our children. My grandmother used to have a saying penny wise and dollar foolish. That sums up health coverage to me. I was watching a t.v. show that had a marathon runner on and she was a stroke survivor that could no longer run unless she wore the walk-aide. I remember it like it was yesterday when I coulnd’t believe that anyone could clearly see the benifits to her but her health coverage stated what I hear much to often and that is that machines like these are concidered experimental. Believe it or not they say the same thing about the benifits from acupuncture. Keep in mind that acupuncture is over 4,000 years old. I guess one could claim that blue cross is just a little behind the times. There are many benifits to Jamie with the use of this machine. First off it helps with foot drop so the wearer is safer. It corrects the foot to step properly to avoid long term problems with the knee, hip, and back. It is a full time job caring for a child that has had such a set back medically and advocating for that child is hard work on top of that. As a parent you just want to focus on your child getting better. Being an advocate is a very nice way of saying you have to become a fighter for everything your child needs. No one can ever underestimate a parents love for their child. I will never get tired and like the great Tedy Bruschi put it ‘NEVER GIVE UP’ my fight for Jamie. You all remember Dave Dansereau who Jamie considers part of our family. Dave who advocates for all stroke survivors young and old went on a mission with us to get Jamie the walk-aide. Dave got the ball rolling with a lady named Sarah Rotondo who works for a walk-aide company. Sarah has been working very hard with me and Jamie to win this battle with blue cross. We have never met with Sarah in person however she treats Jamie as if she was her own child and we are so grateful to have been connected with her. This brings me to Melanie Pellowski. She is the best reporter for varsity life if you ask me and Jamie. Melanie has done several stories on Jamie and has helped Jamie to bring awareness to child stroke through these stories and by sending viewers to Jamie site. So now we come upon Christmas Eve. The day was going great. We were enjoying family,friends,and great food. My beat friend Lisa LaZenberry stopped by later in the evening with her husband Chris and son David. I suggested that Jim made us a cocktail to make a toast that we are all healthy and happy. My friend Carin Martinez had given us all the fixings to make magaritas for this occasion. As Jim was making the drinks a text was coming in from Sarah Rotondo. This is the text exactly. ” Hi Sharon,I hope you and the family are looking forward to a festive and relaxing Christmas. I have some great news,someone saw the news piece on Jamie this past Monday and called our office in Austin to donate a walk-aide for Jamie. The walk-aide showed up at my house today and I can come to RI next week to get it programmed for Jamie.” UNBELIEVABLE!!!! CHRISTMAS MIRACLE RIGHT!!! There was not a dry eye in the house. I was trying to fight back the tears as I didn’t want Lisa’s husband to see me cry. I have that rep as being tough and wanted him to keep that idea. This is the best Christmas. A complete stranger caring for my baby. We don’t know who you are but thank GOD for people like you on this planet. It kills me that children in this country have to go without sometimes but know Jamie doesn’t have to. I can’t tell you all how much this means to us. This will be life changing for Jamie. This machine is so expensive but it can accomplish amazing things for the user. I thank you so very much from the bottom of my heart. May God Bless you always. We are humbled by all the support Jamie has and greatful for each and every one of you who help support her. Lastly we would like to thank Nick Mattera for all his work on this web-site so we can remember all the good things to take away from this journey. Not that we will ever forget Friday,December 24th,2010 the day an unknow person made an incredible impact to our daughters recovery. GOD BLESS Jamies mom