Ashley's Guestbook

Hi Ashley, My name is Lance and I have Mitral Valve regurgitation and Aortic Stenosis. I have interviewed with Dr. Trento and Dr. Raney at Hoag Hospital. I have an appointment to see Dr. Starnes. My question is how did you finally decided on Dr. Starnes and not Dr. Trento? I can\'t seem to make a decision. Happy to hear that you are doing much better.

Dear Ashley, Thanks for posting. I\'m 46, and have mitral regurg. Your blog is a blessing for me, as I wonder what young women experience. (you are a lot younger than me...) Thanks for taking the time. Hope you are feeling well now. -Jennifer Turner

Ashley, I returned to work at 11 weeks. I maybe could have gone back at 9 but I was scheduled for 12 weeks and figured whAt\'s the hurry? There\'s no right or wrong answer to your question. Listen to your body. Ricki Shine

Hi Ashley. I\'m 5+ weeks post op for same condition as you (at UCLA); had OHS, none of that minimally invasive stuff - give the surgeon a good view and lots of workspace I say. Going back to work next week at the 6-week mark after starting cardiac rehab 2 weeks ago. But everybody is different, everybody starts off from a different place, and everybody heals differently. Your cardiac rehab is making you stronger, those 2 hour naps just mean that it is affecting/changing/healing you. You can probably see progress already. The question I\'d ask about going back to work is will it slow down recovery? The answer may be yes if you would otherwise decide to push it during rehab and take the long naps, since that\'s at least half day right there and to do some kind of workout on the days you\'re not in rehab. I\'m with Barry: hard but non-injurious activity improves healing and recovery. It does this by recruiting specific adaptations generated by 4 billion years of evolution experienced by your ancestors. That\'s why they get you up out of bed and walking so quickly after surgery. Did you consider returning part-time if your workplace allows it? That might get you the best of both worlds. -- DVB

Hi Ashley, I took the full twelve weeks that my insurance offered and am not sorry I did that , because my body needed that time mentally and physically to heal. I also went for cardiac rehab in my eighth week and did about 25 sessions which helped me a lot. So don\'t worry about the norm just do what your body tells you to do. Everybody\'s recovery time is different. Sara

Hi Ashley....friend... In a way, perhaps doing the whole 12 wks for recovery may be good...in a way, maybe the work social environment may be good...may be good to be with people....it is really, I\'m sure, what works best for you. If I wasn\'t retired, I know I could have been back to work before 6 wks..that\'s me...not you or anyone else. At 6 wks I\'d started running, completed a Sprint Triathlon, and a 5 K (3.2 mile) running event, done a 50 mile ride on my bike, etc. ...but, I had this \"drive\" from somewhere to move, move, move. I think moving, doing, speeds the recovery and builds on itself. I\'m only telling you this stuff I\'ve done to try to tell you it can be done. I\'m and old guy and not at all a strong athlete. If I can do this stuff, dang, just about anyone can...especially young people. I\'m struggling with some stuff, for sure, like the mile hill that has been eluding me conquering it. It beat me again, yesterday...but what I\'m sayin\' is...gotta do stuff. I will tackle that hill once a week, at least, until I conquer it....won\'t quit \'til I do it. I\'m 12 wks post surgery now & I guess 5 wks into 12 wks of rehab. Rehab here for me is heavy sweat, I mean dripping wet...they are building my strength...but it is their program philosophy for their patients to work HARD because science shows the long term rehab results are better to produce healthier patients. If you want to see something that some say is motivational, inspirational, Google ...or easier..go to youtube, and search The Butterfly Circus. ...Barry on the mtn in NM.

Hi Ashley, It\'s ONLY been 2 weeks......you will be surprised how in a couple more weeks (and months) you will be feeling normal again! Be patient with yourself! Best of luck! Lori Wakat

Hi Ashley, I\'m glad that you have had the surgery and now can put that behind you. I\'m like you - mitral valve prolapse with severe regurgitation. Weeks ago my cardiologist told me I need to get my valve repaired soon, as in right away. I really appreciate your post. It is so good to see that your surgery was successful and you are getting stronger every day. Be good to yourself. You\'ll be feeling so much better really soon! Chris

Hi Ashley, It is great to hear you had such a great surgery with repair of your valve. I am sorry to hear about your med side effects. I am glad you are better now. I was not able to concentrate enough to read for over 2 weeks after my surgery. My vision was also a little blurry. I was gradually able to read and concentrate for longer period of time. It is frustrating to have to be confined and not be able to do things you would like to do. Give yourself the necessary time to heal so that you do heal properly. Discuss your symptoms with your cardiologist and/or surgeon to make sure everything is as it should be, just in case. It is better to rule things out than to let things go. If you notice anything unusual, call your dr. to check. I missed the signs of a bleeding ulcer about a week after I was home from the hospital after surgery, and I ended up back in the hospital needing blood transfusions. I don\'t think this is a usual thing, but just don\'t let something go without checking with your dr. If they say it is normal, then you will feel better. I wish you a great recovery. Just know that it takes some time. Let your family take care of you and do those things you aren\'t yet supposed to do. You will get there, one day at a time. My prayers are with you. Tia Phillips

Hi Ashley, Congrats on making it through with a repair!! I\'ve been wondering and waiting to see how it went for you. Thanks so much for the update, you have tons of support through your journal family, keep writing!!! Take care and take it one day at a time. Debby T.

Hi Ashley - I had my surgery on April 7th and i was walking 2 days later. If you are still feeling in a funk it could be the meds. Once you get off narcotics it makes a huge difference. That said - depression is pretty common after heart surgery. You should talk to your talk. Congrats on a successful surgery. Randa G

Say, Ashely...from the wannabe athlete guy...the remarks about depression are very important. If I had it, personally, I wouldn\'t admit depression to anyone, not even myself..I\'d be in complete denial..that\'s me..so I\'m not sayin\' I had or get any....hmmmmmm. I was just given a new Life is Good T-shirt that shows \"Half Full\" on the front....attitude is everything my hero, the chronic lymphoma cancer survivor athletic guy told me when I tried to see if I could figure out how to get some of his positive karma. ..but...anyway, in his book, Adam Pick pointed out participating in a heart rehab program was important regarding depression. I\'ve discovered through my research cardiac rehab in some areas is not really available, and where it is available, it is not all the same. None-the-less, I believe most health insurance will cover some amount of cardiac rehab. You are in Los Angeles, where there is everything, so you ought to be able to have a really good cardiac rehab program available when your docs let you know you are ready. I\'d guess, purely a guess, if you could get it at a major Universtiy hospital cardiac rehab place, the people giving it would be more likely to be working with the lastest, most up-to-date science regarding rehab. Make sure you get it. In the mean time...you see all those guest book people have told you to get out and walk...yep...just do it. Hope you are in an area where you can walk to neat places such as the Ocean or such. Best to you...Barry on the mtn in NM.

Hi Ashley! I\'m not an athlete like Barry but after my surgery I was up and walking 2 days after surgery and every day thereafter I walked longer and longer distances. Baby steps at first but each day I felt better and stronger. Unless you\'ve been told not to walk, get up off that couch and go. You live in Southern California where the weather is great - get out and enjoy the sunshine. Yes, you\'ll still spend considerable time on the couch for a while, but you\'ll probably feel better. That said, depression is a side effect of this surgery. I think the figure is something like 80% of all heart surgery patients get depressed to some degree. DON\'T ignore it. Talk to your doctors about it. If you read Adam\'s book, you\'ll see he got VERY depressed and he talks about a wonderful therapist he saw that really helped him. You\'re in the same area - maybe you could see the same therapist. Hope you feel better soon! Ricki Shine

Hi Ashley I had mitral valve replacement surgery and a repair of my tricuspid valve last year and the key word is what Barry said, walk. I know you\'ll think, I\'m too tired. Make yourself walk several times a day, even doing laps in your home if the weather is bad. Trust me, the more you do the better you\'ll feel. Hope you went home with a spirometer and you are using it. All those deep breaths will help you get more oxygen and lift some of the fog. Have you tried substituting tylenol for some of the percocet? Check with your doctor first. Stay hydrated and eat small, frequent meals. If nothing helps, check back with your doctor, depression does occur and needs to be tackled early. If you read Adam\'s book, he addresses this. Good luck, you can do this, you got through the worst part and the medical staff performed their roles Now it\'s up to you and you can do it! Fran

Say, Ashley, don\'t know the uniqueness of your surgery, but can tell you as the product of the mitral valve repair done with the minimally invasive robot procedure, I was up and walking right away. We hung around Cleveland for a few days after the surgery and I walked more and more each day...would go out 30 min or more and walk back. As soon as I got home to NM, here on the mountain, was up to six miles right away, and within maybe a week walking on the level along the river with the Hound Dog, was soon up to 13+ miles. I couldn\'t stand a couch either. From the first day I was allowed out of bed, I guess in what they called rapid recovery ICU, I was on my feet. Within a day of surgery I was in the step down unit and started doing laps around the ward, at first very small steps, but it got better and better each time I took a walk. Walking turned into biking and running in no time. As young as you are, you can do better than this old(er) guy. One thing that helped me was I got stuck in my brain from a Nike song \"...everybody gets knocked down, how quick you gonna get-up...\". Damn, that tune phrase played in my head over and over and over and over...the good thing is it helped me get going. So, I\'m sayin\', if it is safe where you are and you can walk, just like the Nike saying...\"Just do it!\" ...Barry on the mountain in NM.

Ashley, Re the post surgery pain. I suppose different places may manage it somewhat differently, but overall probably with a lot of similarities. At Cleveland Clinic last month when I woke up the nurse told me to push this button if, on a 1 to 10 scale, if my pain was at 2, they didn\'t want it above 2. There was this IV thing connected to the button someway, IV thing apparently with morphine. I pushed that button every now and then, one or two or three times, and I can\'t even remember having any pain to speak of. When I was off the IV and was walking, the nurse also said to take \"the pill\" because it would make me feel better and walk better. I believe her. Per the age, though, if that enters in, I\'m at least 35 yrs older than you are....good luck..best to you, Lady. Barry on the mtn in New Mexico

Hi Ashley, I haven\'t heard about MV Syndrome but it totally makes sense to me! I just experienced the most awfully sad evening over a vacation last week that left me confused and wondering what the heck was happening. The following morning I had a significant dizzy spell that left me in the hotel room most of the next day. I also have severe mitral valve regurgitation (am older than you at 42) and am considering Starnes but have been procrastinating because I have two young boys at home. We live in the Southbay and would love to connect with you more! I know you have lots on your mind and your plate. Optimistic thoughts coming your way! If you haven\'t got Adam\'s book I have it and could give it to you. It\'s a great help in prepping for the surgery and post surgery. By the way Adam\'s surgeon was Dr. Starnes too so it should be even more insightful for you. Stay positive and keep us all posted. Best Regards, Debby T.

I can think of another occurence, but maybe not strictly MP Syndrome: about 15 years ago, whenever I would go to get work done on my teeth, they would tip me back too much - I would get irregular heart beat and it got worst when the dentist had to injected a lot of pain killer - I would then get rapid heart beat - and start to feel panicky - so I would ask to get up to go to the bathroom to try and calm down, I paced the hallway back and forth - couldn\'t calm down. So the dentist comes out and tells me it\'s all in my head, that I should see a therapist for this fear of dental work. Anyway, the next time I saw this dentist, he tells me he consulted with a cardiologist about my case - and was told not to use painkillers containing epinepherin - and since then I have not experienced any panic attack at the dentist so watch out at the dentist for epinephrine, it is a powerfull heart stimulant: http://en.wikipedia.org/wiki/Epinephrine

nope no surgery yet - I was told it would be done fall of 2010 - been waiting since. I\'m to have surgery at the Heart Institute in Montreal, but for the past year their waiting list for electives has grown longer - so people like me who can still get around aren\'t considered priority - even with arythmias, painful chest pains, swollen feet and belly - to be honest I\'m pissed off..getting yet another echo next Tuesday - we\'ll see.. thx pete

ok, ok, I apologize for being insensitive Ashley on my last post - plus Ruth may try to run me over with her car or something. Re: mitral prolapse symptoms - I my case I had a severe panic attack once - I had a really bad migraine and got ambulanced to a nearby hospital - the nurse put me on a adrenalin drip for the pain- they released me after an hour, but once in the car with my wife driving, my heart started racing like you wouldn\'t believe - I wanted to jump out of car and run in the fields...but we got home OK; my heart still racing we called a second ambulance to get me to a major hospital. The doctors there thought I had taken cocaine or some other drug - they didn\'t believe my story and the fact that I had mitral prolapse.. anyway it was the worts thing I\'ve ever lived through. other than that, I think it\'s psychological, unless you have severe symptoms like arythmia and tachy. regards, pete so my wife not really except when I went

Pete. Being an atheist has nothing to do with being unemotional. What a stupid comment! I think it has more to do with being a \"detached\" male.C\'mon, this is a young woman looking for a little support. Ruth

There are MANY MANY studies that talk about mitral valve syndrome. It\'s a well known fact that many people with MVP suffer from all kinds of nervous system issues - also migraines. Unfortunately, not too many doctors discuss these issues with their patients. You will also find this is usually more prevalent in women. Ruth

Hi Ashley, Yes, I am familiar with the syndrome you mention. I was diagnosed with mitral valve prolapse when I was about 30 yrs. Old. I am now 64. When I was younger I had severe palpitations and anxiety attacks and also chest pain. I was frequently rushing to the emergency room. Since then a lot has been studied and written about the \"issues\" that often accompany MVP. My friend, who is a psychiatrist and has been helping me with my anxiety, says he believes this may very well clear up after my surgery. If your pre-surgery anxiety is severe ask your therapist to refer you to someone who can do EMDR therapy. See my posts about this. It\'s fantastic, painless and quick. And it works. You can google EMDR to get more information. Best of luck. Ruth Howell

Ashley, hmmmmmm....mitral valve prolapse syndrome re nerves not getting enough blood, etc. I was diagnosed with this prolapse in 1978, which was benign...nothing...until it was discovered last fall it had progressed to what the medical people called \"serious regurgitation. I never really had any symptoms, unless you count trouble breathing on a 1.2 mile swim and running out of steam at mile 7 of a 13.1 mile run, both things that happened shortly before it was determined I had an issue. Never, since 1978 did I ever hear about the syndrome you wrote about. If I were you, which I\'m not, of course, but me...I\'d want to see the references, studies, and know how this theory came about....is there any reliable science to it. To me...who am I to judge...just a skeptic sometimes...but it sure sounds \"phishy\". Barry on the Mtn in New Mexcico

feeling connected? hmmm... not much interest or sympathy from the in-laws - I guess they figure I deserve it somehow :.)) I haven\'t talked about the surgery to my side of the family - they\'re all dead except for a few cousins... I guess it depends on how perceive you - I\'m not that emotional - remember I\'m an atheist. :.)) Other people I know view his surgery as a preventitive procedure - not a life threatening emergency - so they don\'t feel it\'s should such a big deal for the patient. I don\'t expect much from people in general -that way I\'m not disappointed. pete the atheist