Paul's Guestbook

Hey Paul!!! Happy Anniversary! Time sure flies for you..... 3 years already??? Now you're getting ahead of yourself. Best I can recall it's been 2 years. Glad you're doing well and sounds like a new adventure ahead for you. I wish you well. Keep in touch!!

You're impressive! It's also good news -- at least I think it is! -- that you and Kath are returning to Nashua. All the best in this resettlement and in your new job. It had better give you as good a workout as you've had in your previous one, since that seems to have been all to your benefit! Love and blessings to you both, Kathie Reporting from the exit of the scrap heap where I nearly wound up after being struck by a car. I'm lucky, and life is good!

Dear Paul, Wishing you the best on this day, your birthday May 15th! One year ago on my birthday (April 20th) you were released from MGH from your mitral valve repair surgery. One year and 25 days later - you are still ticking and doing well! Have a wonderful day and wait till you see what I give you for your birthday! Love, Kathy

Congrats Paul. Glad to hear you are doing so well. My prayers that the good news continues. Thomas H. MV Repair 5/17/12 (robot broken so done the old fashioned way....)

Paul, Barbie and I are glad to see your still moving along,,hopefully the snow is gone and we will be up in a few weeks,,Looking forward to seeing Kathy and you,,,Best of Luck,,,,Barb and David

Bless you (and Kathy), Paul! Great encouragement and advice for anyone dealing with any scary health issue. I can especially appreciate the part about needing a good domestic support team (Kathy). The real reason we are in SF now is that, while we were lucky that one of us was up while the other was down, the family was panicking over the possibility that both of us might be down at the same time. And so the kids demanded that we live near one of them, and here we are in SF in our son\'s very large house. And according to Murphy\'s Law #1072, since coming here neither of us has been \"down\"! I\'m smiling ear to ear at this reconnection with my dear NH friends. -- Kathie

Oof. Hope you\'re feeling better soon, both flu-wise and rib-wise. Get your flu shots religiously. They cut down all-cause mortality rates by ~30%. Amazing. Best to you & Kathy in the New Year -- DVB

Hi Paul! Happy New Year! Let\'s hope for a better year for all of us! How is that pain in your side? Still have it? An xray would have shown if you had a fractured rib....i agree that the Dr. really didn\'t have any answers and was just throwing something out there to explain it. Sorry about you having the flu. It sucks. People are dropping like flies here with the flu and respiratory junk. We have been super busy at work (hospital) with more patients than usual. I have evaded it so far..... How are you feeling otherwise? No follow up for six months? Good for you for losing weight and eating healthier... I need to do better! Keep in touch and stay positive! Holly P

A fractured rib?? Hmmmm, wouldn\'t that have shown on a chest X-ray? Have you had one since surgery? Sounds like he\'s grasping at straws. Well, at least it doesn\'t appear there is anything going wrong with your repair. Now you just have to figure out how to \'eat right\' while on vacation. that\'s no fun. Nancy B

Hey Paul, I\'ve been thinking of you, and sorry I haven\'t checked in more often. You sure are being brave....not the least bit depressed about any of this?? I always enjoy reading your journal, you have a great sense of humor and I know that will carry you through what-ever is ahead. Know that I\'m thinking of you and keeping you in my prayers! After all, it\'s not in our hands anyway, is it? Holly

Hey Paul, Meant to write earlier, but things just kept getting in the way. Was pissed to read that your repair failed. Hoping that the 2-week (Holter?) monitor shows some promising news. I have been to see my cardio and an EP in the past couple of weeks to find out why I still have a missing p-wave. It\'s looking like it won\'t be an issue, but just surprised that these issues that you never anticipate can come up. Completely agree with DVB that going back to work would not have affected your repair. Sounds like a poor excuse the doctor might have thrown out there. Dr. Gillinov and the other docs I\'ve talked to stated you can run a marathon once the repair and rehab was complete. Again, hope the monitor shows good news and you can postpone or even avoid surgery. Regardless, your great attitude and sense of humor will see this thing through. Best of luck to you, -Thomas H.

Hi Paul. Ask for a quantitative measure of the \"effective regurgitant orifice\" area (ERO), \"regurtitant volume\" (RVol), and \"regurgitant fraction\" (RF) off your echo to get the most reliable grading. These quantitative measures are the best indicators of risk and the best diagnostics according to my cardiologists. Large studies used these to follow patients & outcomes, so you rationally assess where you are compared to those study groups. According to this freely available journal article: http://circ.ahajournals.org/content/96/10/3409.full \"The thresholds of RVol ≥60 mL/beat, RF ≥50%, and ERO area ≥40 mm2 provide a relatively high sensitivity for severe, grade 4 mitral regurgitation.\" Grade 4 is the usual threshold for surgery. Check out table 3 in that paper for quantitative definitions of all the grades. [Lead author Dujardin and co-authors are from the Mayo Clinic in Rochester Minnesota.] On an echo just about everybody shows leakage. The equipment is so good it can see the small amount of backflow that\'s needed to close the valves. I\'m not a doctor, so consider these discussion topics for your cardiologist. Best to you, my man -- DVB

Paul: I have followed your journey from the beginning and was really surprised by your recent post about your regurgitation having returned. Sorry to hear that but I have come to learn that it is not that uncommmon. First learned of your pending surgery when I saw a post by either yourself or your wife on \"Winni.com\". I have a summer place on Sleepers Island so your condition really prompted my interest as I had mitral repair surgery done in April \'10 at Brigham & Womens. Never posted on HVS because I didn\'t discover the site until months post surgery. Spent 6 weeks post surgery recovering at the lake going to the mainland every morning to do my walking. My recovery was pretty uneventful except for the fact that when I went to my GP 2 weeks post surgery he heard a murmur. I was really freaked out. Immediately saw my surgeon. He really downplayed the noise telling me not to worry about it, just \"go live your life\". Two weeks later saw my cardiologist (a B&W doctor) and he put my mind at ease. Bottom line I have a grade 2 murmur and they do an echo every 12 months to watch it. It hasn\'t changed in over 2 years and they tell me that my chances of resurgery are about 1 in 3 if I live for another 25 yrs. I am presently 65. Left ventricle has returned to normal size and EF is 60 so for now things are according to my heart doc \"excellent\". Keeping fingers crossed. Anyway, decided to jump on and send you a note just to let you know that if your leak is \"moderate\" and it doesn\'t get worse your not predisposed for another operation. My doc says he has many patients that have developed some amount of leakage post surgery and most never need surgery again. Let\'s just hope that neither of us have to do it again. Although, if we do it\'s better than the alternative.

Thinking of you from out here in sunny SF. Think I\'m gloating? Don\'t you believe it. It\'s been an unbelievably tough, tough slog with more and more to come, and I sure am missing my friends, and the whole environment, in New England! Been thinking about you, too, as you all have \"weathered\" the recent events . . .

Paul, That sucks, and very sorry to hear that. I think about having to do it again, and although I don\'t want to, at least I would know what to expect this time around the block. Keep us updated and will keep my fingers crossed that you don\'t have to go through that again. TrentV

Hi Paul. I\'m so sorry to hear. \"Strained the repair a bit too much\" is not on the list of common reasons for failed repairs, so don\'t beat yourself up, that\'s not the reason. For lists of the reasons see these papers (one with David Adams on the author list and the other with Marc Gillinov): http://www.mitralvalverepair.org/images/publications/whydomitralvalverepairsfail.pdf (figure 1) http://jtcs.ctsnetjournals.org/cgi/content/full/113/3/467 (table II) Understanding why the repair didn\'t work is probably a good idea so you can find the best path forward. For example, failure due to a ruptured chord that had been surgically shortened might indicate a different path to take than would failure because of continued valve degradation. If it comes to a re-repair, you may want to look at a center that specializes in them so you get the advantage of their experience and better outcomes. I wouldn\'t consider a replacement unless I had multiple opinions saying that a repair is not possible. Best to you -- DVB

Paul, I am so sorry! Cannot imagine how frustrated you must feel! Thank you for sharing your story in the midst of your frustration. One good thing that may come of this for others reading your story is to realize these are doctors/people and although they give us their best shot, they are not gods and sometimes things just don\'t follow their projected plans. It is still a mysterious process in many ways! Glad you are doing ok and my thoughts and prayers are with you as you work through next steps.