Hello everyone and welcome to all the new people to the forum!
Jeannamarie - I am so happy your procedure went well! It was better to have it done now, rather than to wait until your body deteriorated further, I think. And you are back to work already... that is awesome! Please keep us posted on your continuing successful recovery. We all love to hear the good stories!
Dejaboo - I am sorry to hear you are still having so much trouble blood clots and hemorraghing. I have to say, now that I am off Plavix, that my periods are back to normal. When I was taking Plavix, I had TERRIBLE cramps combined with constipation first and then diarrhea. Now that I am off the medicine, my period are back to normal which means almost no PMS for me thankfully! I hope you enjoy your Summer - you deserve it!
PFOMOM - welcome to our wonderful forum! I think most interventional cardiologists can perform a PFO closure, although some have more experience than others. I "lucked out" with my Int. Cardio bec. a friend recommended her dad's doctor. It turns out he has done many of these procedures... he may be considered to be one of the top in this region but I am not sure. I agonized for a few days over mentioning names here, but I decided if it helps our community why not. My amazing cardio who performed the procedure is Ramon Quesada at Baptist Hospital in Miami. He has a younger, up and coming doctor, who is "my doctor in the office." Let me tell you, all this medical terminology and terms I've learned in the past year or so, it's incredible... This awesome "doctor in the office" is one of the doctors who finally took the time to listen to my symptoms and take me seriously. He is the one who sat with me to help me decide what we should do and who showed us the 3 month echo that the PFO was closed and who took such great care of my emotional and mental health during this incredibly difficult period in my life. I truly feel that it is because of his listening ear, great ability to deal with patients, knowledge of his craft and superior reasoning skills that I am still alive today, because my body could not go much longer. He is the doctor in the office, because he is still young and is just now building his practice and experience, but boy, does he have a great future ahead of him!!! His name is Marcus St. John and he cares and he LISTENS! As far as your neurologist goes, since it seems we are in the same region, I would get a second opinion regardless of what he tells you. My first neurologist was a doctor I picked "out of a hat" so to speak, just from my insurance book after my TIA and the ER doctor suggested I go see a neuro. This first neuro seemed brilliant but ignored my symptoms... I later learned he was running a PFO closure study to prove the migraine-PFO connection. I did not have a history of migraines so I was not good for his study and therefore "dispensable." Although he is regarded as a brilliant neurologist (I later found out), he is not a "brilliant" doctor when it comes to caring for his patients. So, if this is the neuro I think you have (Forteza), please get a second opinion. I stopped seeing him because he dismissed my symptoms even though I kept telling him I felt exhausted and out of breath all the time. He gave me migraine medication when I don't suffer from migraines!!! Sorry... this is why I agonized over names, because in this recent life- changing experience, I got to see many dimensions of the medical profession and doctors, both wonderful and terrible! I hope this helps you, but please feel free to e-mail me at firstname.lastname@example.org should you need more information. If your neuro does not recommend closure, please seek a second opinion.
Beezy 84 - Life is like a box of chocolates, isn't it, you never know what you are going to get! The whole idea of a hole in my heart let alone an IMPLANT in my heart were so alien to me and yet, here I am 6 months after my implant and thanking all my lucky stars that I did it! It is so difficult to make this decision and life has no guarantees... all I can tell you is that my life post surgery is incredibly better than my life almost two years before surgery when my health deteriorated rapidly. I hope you follow your heart and your gut instincts and once you have made your decision, don't look back! Life is too short to live with regrets. I hope you will keep us posted. By the way, I have the Cardio Seal implant. No complications and after 3 months, the hole was closed!!!
withnail1969 - Welcome to the forum! I did not get any specific advice on flying, but I think each doctor has their own set of recommendations. I was not to see a dentist or get any type of MRI for 6 months. I think the cardio is the best doc to give you advice post PFO procedure, not the neuro.
I wish everyone much luck and wisdom in making their decisions. These are difficult times, but you can do it!!! I am living proof of this... my life is almost back to normal and I am enjoying every minute of it like you can't imagine!
Post Edited (furface) : 5/13/2009 12:40:32 PM (GMT-6)
Good luck, Beezy84! I'm sure you'll be back to normal in no time. You are young and strong and this tough experience will make you even stronger. Too bad you had to go through such a tough time at such a young age, but you'll be a better person for it. I hope you will keep us posted after your procedure. I am sending many positive thoughts your way!
CatMom5, I'm sorry to hear you are still having trouble 1 year after your PFO closure... it must be real tough for you. I wish you all the best.
Withnail1969, I'm sorry to hear your symptoms are worsening. My main symptoms were just like yours, shortness of breath and extreme fatigue. Toward the end (until they finally closed the PFO with the implant), I would be so tired sometimes that I could not get out of bed to go to work; another day I walked for about 30 minutes and I came home exhausted, worse than if I had run a marathon. And I used to run marathons and have been running as part of a healthy lifestyle for 25 years, so I knew something was definitely wrong... as a result of the large hole and high level shunting, my heart couldn't handle the additional load on the right side and it was starting to fail and causing borderline pulmonary hypertension. Yeah, life was not fun during that period. You can read more details if you wish on previous pages of this thread and there is also a thread #1 and #2 with the same subject that includes lots of valuable information from many people who have gone through similar journeys.
Climbing4life - how are you feeling now? Do hope things have settled down for you.
Beezy84 - hope you are doing ok, I look forward to hearing how it was for you!
Catmom5 - you haven't had much luck have you? Hope that changes for you soon, let us know how you got on at the hospital.
Greenhope - thanks for your kind words. I already get palps when I bend forward, hoping the closure will make that better not worse!
I'm seeing the dr who will perform the procedure on Monday, what questions did you all ask? I know he does this procedure a lot but what else should I quiz him on - I don't want to forget anything!
Jeannamarie - so glad your procedure went well. Did you have the TOE/TEE whilst having the closure? I hated that test so much I'm hoping I don't need it again.
Thanks for sharing your positive news!
Good Luck today Beezy!
Thanks WithNail....I had my TEE Wednesday and like we knew, there is a leak around the edge of my device. The device hasn't shifted though. It's not a large leak so my Cardiac Surgeon has decided to take a wait and see approach. He thinks I'll do fine with the way it is right now but if it gets any bigger we'll have to do something about it. I'll have to have periodic TEEs to monitor the size of the leak. The good news is that I'm finally off the Plavix and just on 325mgs of aspirin every day. YAY, I'm so looking forward to no more bruising.
JeannaMarie - I hope it's the same for me, that camera experience was vile! The stitches bit sounds grim.... hope you are getting used to the Coumadin, I've been on warfarin for 10 months now and getting a bit fed up with crazy INRs!
Beezy84 - do hope all went well and you are doing ok. Look forward to hearing all about it!
Catmom - what a pain! Do hope your healing has just been a bit sluggish and future TEEs show an improvement. Will keep my fingers crossed!
Beezy84, I am so happy everything went well with your procedure. Please keep us posted on your recovery progress!
Climbing4Life, I am also very happy for you that your symptoms have subsided. It seems as if your heart has realized your new friend is here to stay! Please also keep us posted on your recovery.
We have a whole new life ahead of us, full of surprises and possibilities! As my neurologist suggested, go out and celebrate with your loved ones this great sucess story in your lives!
Great to hear Beezy84 and climbing4life are doing so well!
I've just met the Consultant who will do my procedure, he was great, he has done hundreds of closures and was very calming. I'm gonna have a GA which I'm fairly happy about as I hated the TOE so much. So I've just got to wait now, he said the maximum wait is 3 months but as I can go in at short notice I'm hoping for a lot sooner than that!
Stay well everyone.
Post Edited (irish4200) : 5/12/2009 5:37:40 PM (GMT-6)
Post Edited (furface) : 5/13/2009 12:42:16 PM (GMT-6)