Lance posted a note for Ashley that says:
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.
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.
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
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.
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.
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!
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.
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.
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.
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!
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.
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
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:
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.
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.
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.
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.
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
What a timely post. I couldn't have said it better myself. I am having my surgery on April 21 and have experienced the exact same reaction - or lack thereof - from friends and even what little family I have.
I had been seeing a therapist to deal with my anxiety and better prepare myself emotionally for the surgery and I brought this situation to her attention. Unfortunately, she was not able to shed much light on the issue. But she did not think peoples' lack of interest and support was the result of their being afraid I wouldn't make it though the surgery, or not knowing what to say etc.
Very few of my friends have said anything about my upcoming surgery. It's like they don't believe me or something. I just don't get it. Someone to whom I've given an incredible amount of emotional support over the past year has not been in touch with me at all. So . . . I'm going to chalk this experience up to our choosing some really crappy, insensitive friends. I don't know about you, but I'm deleting them as friends immediately and they will never again hear from me. This is really disgusting behavior. I am really sorry for you as I know how terrible this feels.
These are all questions that I had. What did I do? I went to the ICU several days before my schedualed surgery date and I spoke with the nurses. That helped a lot. For one thing, I actually was there in the presence of other heart patients. The experience demystified the so called "process." My questions were answered. As far as the tube, yes, it was anxiety city for me; however, they now give you something where you don't even realize its in and its out before you know it.
I'm sure the procedure varies from hospital to hospital but I can tell you what happens at Cleveland.
My report time was 5:15. My husband and had barely sat down in the waiting room when they called my name. I was taken back into the prep area where all the 5:15 folks had their own spacious cubicle. I was told to undress and put on a hospital gown and lay down on a gurney. A nurse came in and took my vitals, asked a lot of questions (they ask LOTS of questions every step of the way - often the same ones - I should have made a recording.) I was given a pill - I'm guessing it was valium or something like it but I didn't ask. At some point my husband was allowed to come sit with me. I was probably in the cubicle for an hour when a very nice man came to wheel me up to the OR waiting area.
I stayed outside the OR for probably 15 minutes although it seemed much longer. A nurse came out of the OR and, you guessed it, asked me LOTS of questions. Finally they rolled me into the OR. It was big and bright - much different than TV ORs look! There were about 20 people scurrying about preparing for surgery - they all stopped dead in their tracks and I was introduced to them. Nice touch, I thought. I was transferred to the operating table (very narrow!) and a nurse and an anesthesiology fellow introduced themselves and started to put in IVs on my right hand and my left arm. The nurse on my right finished quickly (no pain!) and said "I'm going to give you something to take the edge off" I don't think I heard her finish that sentence and the next thing I knew I heard a nurse telling me to open my eyes and squeeze her fingers. It was over!
I know you won't believe me but the whole process wasn't bad at all. I did my best to stay calm throughout and I think it helped a lot. I had faith in my surgeon and his entire team and had no doubt I was getting the best care possible and so I just relaxed and took things as they came.
Good questions about how everything happens. I had a mitral valve repair at Mass General Hospital in Boston on Jan 18. While it's a different hospital, I am guessing the process is similar. If you are interested, take a look at my journal.
I n general, I found that everything went more smoothly than I had anticipated. A big part of it is your own attitude and expectations. It may sound trite, but keep confidence in your self and stay positive. That really helps.
sometimes the bloating is the result of the meds they prescribe to you prior to surgery so your heart doesn't work as hard as usual - eg beta blockers etc.. That can push your over into some water retention - but it will all reverse once you're thru the surgery
I used to weigh a lean 195lbs working out 3 times a week; had to stop that, pretty much lost all that sinew but I weigh about the same -no love handles - what else could it be : generalized water retention maybe ?
I suppose the puffy thing has something to d with retaining water caused by the heart not pumping properly??? I have the same issue and it has been getting worse. If you find out what exactly causes this please let me know. I was told to take a mild diuretic which helps a little, although I don't take them very often.
Hello Ashley, I had the robotic assisted mtral valve repair on Monday at Mayo. All went as planned and I am at home recovery today, Friday.
I wish younthe very best in your experience. I will keep watching your updates and progress.
Hi Ashley. I'm from LA and although I'm a Bruin, I'd feel comfortable at USC. I'm just now feeling the tired thing...bt you give me hope that everything will just be fine. I'm slowly getting ready for work but I will certainly take time to read your entire story and follow your Journey. Take it easy.
You live in LA? Isn't there more than one excellent surgeon there who could perform your heart-valve replacement? Does it have to be JUST THAT DOCTOR? I was told who the "best" surgeon for my valve in our town was. I did not go to him. The one I went to, recommended by my cardiologist, was wonderful. Perhaps there's a second possibility in such a big city of an excellent surgeon where you don't have to wait so long.
I can sort of relate with your frustration - I've been waiting for close to 7 months now for the same type of surgery - and when I go to see my cardiologist, the waiting room is full of much older people, so it's easy to feel resentfull...
but, hang in there - you're young but you seem to have a supportive boyfriend.