8 Months Post MV Repair (non robotic/minimally invasive)
Journal posted on June 1, 2012
Wow, time flies! I regret not posting earlier because I find everyone else's posts so helpful.
My life and health are back to normal. Had a normal stress test with my cardiologist and he doesn't need to see me for 6 months. Still have occasional PVC's but the doctor doesn't recommend any treatment for them. I don't feel them. So, I'm completely off all medication including aspirin.
My scars are nominal and basically hidden (bikini line and bra line) but have a little bit of numbness around the incision sites (not worth a complaint).
Heart wise, my twinges and heart pains are gone that were so common prior to surgery. I had a few right after surgery but haven't had any for a couple of months. The bone weary tiredness is also thankfully gone.
Excercise is still a little bit of a mystery for me. I just don't seem to be able to build up my endurance for jogging for more than 6-8 minutes at a time without my heartrate getting too high to continue (175). I've always worn a heart rate monitor while jogging pre and post surgery. It's been frustrating and snail's pace slow in trying to get back to a solid 3-5 mile jog. So for now it's a good walk with a little bit of jogging thrown in most days. Tough and unfair to even complain about it given some of the other patients who haven't had as easy of a road to recovery as I have. But wanted to share for those that it might help.
One of my biggest learnings and changes I've made after cardiac rehab was how much dehydration affects my heart. While being monitored during exercise the cardiac nurses pushed water on me and it almost instantaneously improved my irregular heartbeats. Now, I recognize if I'm dehydrated and try to drink lots of water everyday (especially in the mornings before my walks).
Good luck to all of the patients looking forward to surgery and continued heart health to those in recovery!
I'm so thankful to be on the other side of surgery!
Recovery is pretty much moving right along with daily walks (up to two miles at a time), driving, and now cardiac rehab. My husband Steve is back to work and the kids and house responsibilities are back with me. I even worked in the classroom 4 hours yesterday. I wonder how long it will take to get the matching socks back together? I'm staying away from lifting heavy things (like the kids) but other than that I don't feel limited in my activity. With that said, I will be sending the dog to get her monthly baths rather than destroying our bathroom with that chore ever again! Thanks Jeane for setting that up! Definitely a positive outcome of the surgery.
The first couple of weeks home, I really struggled with the extreme but short dizzy spells every time I stood up. They have pretty much gone down to mild and only once per day. The incision sites are healing fine. I'm still sore where they stretched open my ribs but now it feels good to stretch instead of painful. I even sneezed 3 times today (heater kicked on for the first time) and though I felt it; I wouldn't say it hurt.
Coumadin is a mystery. I think by the time my levels get to be 'therapeutic' it will be time to discontinue it altogether. The only other thing I'm taking is Metoprolol .25mg/day. I'm hoping to get rid of that too but the cardiologist hasn't mentioned an end date. I'm still having PVC's but no 'runs' so I think that's considered normal during recovery.
I'm looking forward to my first of 24 (3x/wk for 8wks) cardiac rehab session tomorrow. I was sold when the nurse explained one of the benefits is to build exercise self confidence. So when I'm out on my own exercising I know what's normal and when it's time to slow down and rest. I'll be curious to see the age diversity of my group.
Good luck to all of you with pending surgeries. Thanks for sharing your journals here.
Going into my surgery my goal was to get the best repair possible. It was difficult to think past the surgeon decision. Looking back I wish I would have thought to consider the post surgical care in a teaching hospital and how it works after the surgeon has completed the surgery. Don't get me wrong, I think I received excellent care post surgery, it just was different than I expected. My experience taught me that once the surgery was done and without complications the care of the patient is really turned over to the 'team'. The 'team' being made up of a fellow, rotating year 1 resident, nurse practitioner, medical students, the on duty charge nurses and nurses. This team has a recipe for care that they follow for each patient that is dependent on the daily x-rays, lab work, and patient vital signs that dictate their prescriptions for care and medications. While I can't find fault with the recipe or the outcome of the care, I found it to be impersonal and frustrating. I think if there was a little more respect and communication between the outstanding nursing staff and the 'team' it would make the post operative care more efficient and productive.
I ended up staying 8 days. I was hoping for 4 - 5 days but I had a small leak in my lungs that took a few days extra to expand. 95% of my discomfort was gone after the second of two chest tubes were removed. Those things are terrible!
Luckily, and one of the reasons I chose USC was that my nephew and niece are second year residents at the hospital. Their insight into the processes and care were helpful for me to understand how decisions were being made concerning my care. Thanks Stu and Alexis!
I met some really terrific people especially the nursing staff. The USC cardio thoracic nursing team are a group of committed, professionals that I can't thank enough for their patience and excellent care provided to me for the duration of my hospital stay.
Home now and on day 13. I saw my cardiologist on
Friday. He lowered my Coumadin, raised my beta blocker and added Benedryl to try and help with an itchy rash I think I was getting from all of the meds. I am off the pain meds and walking a few times a day around the neighborhood. He said we wouldn't know if the repair was a success for a year. He did an echo and an ekg. I still have a little bit of air in my chest cavity. I think it's gone now. The echo showed trace regurgitation but he discounted this as a long term result until the heart is fully healed from the surgery (really I have to wait a year to know if I'm done with a leaky valve?). The EKG didn't show any PVC's. I'm relieved with that finding because that was the secondary symptom that prompted me to have the surgery.
I am sleeping comfortably in my bed with a mound of pillows even though I had planned to sleep in a recliner.
My heartfelt gratitude to my husband, sister, Mom, Dad and Nancy for covering the homefront while I got my heart fixed.
Looking forward to cardiac rehab with my inlaws at Torrance Memorial in the next couple of weeks and ultimately a solo walk/jog with my dog to my favorite lighthouse trail where I can watch her chase rabbits early in the morning.
Mitral Valve Repair September 13th - USC - Dr. Starnes
Journal posted on September 26, 2011
Hello HVJ Friends,
I am home and delinquent in updating my journal.
I had MV repair completed at USC with Dr. Starnes and his 'team' September 13th.
He did as planned and repaired my mitral valve with a minimally invasive, nonrobotic approach. I'll quote directly from the operative findings rather than try to recap and miss something important. "The mitral valve had a total prolapse of P2 with many broken cords. This was resected a a quadrangle resection. The anterior leaflet was also prolapsing in the A2 area were 2 sets of cords were also placed. Once this was completed and a ring inserserted, we were able to have a competent valve coming off bypass. Postoperative echo revealed no stenosis and no regurgitation. Clamp time was 46 minutes. Pump time was 70 minutes."
I woke up in ICU with a comment that I was having a hard time breathing. My Oxygen saturation was fine. I just couldn't take a deep breath due to the draining tubes.
Hearing that both leaflets required repair along with the confirmation that there were torn cords reassured me that we'd made the right decision to have the valve repair rather than risk a replacement later.
Thanks goes to Dr. Starnes and my cardiologist, Dr. Lurie for guiding me to a successful mitral valve surgery at the right time.
Completed the CT Angiogram on Wednesday at Torrance Memorial. I would recommend the radiology department at Torrance for any of you in the South Bay. They have a new CT scan machine and all of the staff were terrific. I would also recommend this noninvasive test especially for patients without a history of heart disease nor other complications prior to heart surgery. I'm not sure why someone would go for the traditional angiogram or TEE if they didn't need it when there is a less invasive test out there. The CT Angiogram gives the surgeon information prior to surgery including if there is calcium build up or blockages that may need to be dealt with during surgery. My plan is to go to Torrance Memorial for everything (including rehab) except the surgery (USC) since it's local and my cardiologist has an office there.
For the test I needed my heart rate to be in the 50's and steady so they could take the images between beats. I was in the 60's so they gave me a beta blocker which worked for the heart rate. I had about 30% PVC's (premature ventricle contractions) which made it a little challenging but ultimately they got it done in one shot. The PVC's didn't really change given the extra beta blocker.
I requested two cd's (one for the surgeon and one for my cardiologist). This is key! It's so hard to get in touch with the right people that I've learned to request things when I am there during the appts so I don't have to spend alot of time later getting to the right people for the information. I ended up going back the next day with my two boys and two nieces to pick up the CD's. They were ready and I was able to deliver one of them to my cardiologist in his office in the same hospital and mailed one to the surgeon.
My cardiologist called the next day to say there were no other complications and confirmed that there were significant PVC's. I told him I didn't think the current beta blocker was working and asked if I could stop taking them because I get so tired with them. He said the opposite and said I should double the dose since he was conservative in the dose amount to begin with. Ugh! I was disappointed because they already tire me out.
In a way, having the increasing PVC's does reinforce for me that I should have the MV repair done. I mostly don't feel them. I feel so good some days that I wonder why the heck I'm even having the repair. My perception is that I should be alot worse off than I am to need heart surgery. I wonder how many people are walking around in my situation and don't even know it.
The bottom line is I want to make sure the surgeon can repair my valve rather than replace it. The longer I go without the repair raises the risk of not being able to repair the valve.
MV Repair Scheduled with Starnes @ USC September 13
Journal posted on August 19, 2011
Summer is almost over, kids go back to school in a little over a week and my MV repair is scheduled for Sept. 13th.
I'm Starting to count down the days until surgery. It's hard to believe some days that I even need heart surgery. I met with my cardiologist and found that some of the cords are tearing so it's time to repair to avoid the replacement. We met with two surgeons in the LA area and decided on Dr. Starnes. I believe there are excellent surgeons in the LA area that have significant expertise and outstanding results with MV Repair surgeries.
I chose Dr. Starnes because it means ultimately less time on the heart and lung machine because he's not going to use robotics. A neighbor (works for Edwards Life Sciences) shared with me this variable in using robotics vs. nonrobotics with all other things equal. Dr. Starnes preferred method of the type of repair I need is minimally invasive, nonrobotic. I think the time to get the robotics set up, adjusted take more time. I also like the idea of more direct contact for the surgeon.
Another 'option' we decided on was to have a CT Angiogram done. The surgeon said due to my age (43 on Monday) and relative good health it was optional to even have an angiogram. Since I'm having the heart surgery anyways, I'm the type that would like to know if I may have some other issues prior to the surgery so we opted for the least invasive CT angiogram. It's scheduled for next week at the local hospital rather than USC.
Thank you to all HVJ contributors, your experiences and insight are very helpful! I can't imagine this journey without this resource. THANKS ADAM!
Almost six years after my diagnosis my cardiologist advised me that it's time to choose a surgeon. Thank gosh for Adam's websites! I can't imagine being in this position without these resources.
Since 2005 I've had severe mitral valve regurgitation. My cardiologist has been monitoring me every 6 months with a stress echo. In April I had a dizzy spell while on vacation and was anxious about my regular May check up. Additional irregular heartbeats were picked up following the stress echo. I wore a monitor (cool patch device with no wires that I mailed in after a week) following the echo which turned up regular PVCs. My Dr. was expecting premature atrium contractions but I had premature ventricle contractions. He's prescribed a minimal dose of daily beta blocker and I self prescribed cutting out my daily caffeine. I really haven't noticed any difference on the medication and off the caffeine except mild caffeine headaches. Increasingly, I have 'twingy' and sometimes painful heart pains. These pains are the same ones that got me into my general practioner 5 years ago. They normally go away within a minute or two but about a week ago they stayed with me for at least an hour until I eventually fell asleep. My cardiologist acknowledges them but doesn't think I'm actually feeling my mitral valve. I do feel my heart and it does ache pretty much every day.
What's crazy is my daily life really hasn't changed, other than I can't wait until my kids go to sleep so I can too!
The bottom line is, it adds up to needing a valve repair and I need to figure out who will do it.
For people who have traveled for surgery, did you visit the surgeon/facility before your surgery? What advice/recommendations would you have for me? My first priority is to have the best possible repair even if it means more hassle and time to get it done.
Thanks for any and all advice.
PS: I have read Adam's book (first edition) and used his heart surgeon website. I'm debating whether I should get the 2011 edition.
Thanks for signing my guestbook. I think my pulmonary pressure increased to 40??? I'm not sure but I could find out for you. In any case it dropped back down on my next echo so my Dr. has been a little more conservative with surgery recommendations.
Dr. Gillinov (Cleveland Clinic) wrote an article earlier this year that recommended mitral valve repair surgery for anyone with severe regurgitation and were asymptomatic otherwise. I think this has been a more proactive approach for cardiologists and has fostered alot of debate. So, I am not surprised to hear that surgery was recommended to you if you are experiencing regurgitation and increased pulmonary pressure. I think there are many cardiologists who would recommend surgery for patients experiencing two or more 'symptoms' including mine. Let me know how to get into touch with you if you'd like to chat more. My email is firstname.lastname@example.org. Take Care. Debby
Pulmonary pressure down, surgery deferred, & nice lunch date
Journal posted on January 14, 2010
On Dec. 30th, I insisted my husband come with me to see Dr. Lurie with full expectations my pulmonary pressure would measure high again. I'd been taking for granted that my regular echo appts would show no changes and went last summer by myself when my pulmonary pressure did show a change and my Dr. suggested we start thinking about the timing of my surgery. Boy was I scared and wished I wasn't alone after that news.
Then, in December, Dr. Lurie actually called to remind me to make my appt. I was procrastinating and just putting it off until the new year. He really wanted to set a time for me to get a 3D echo and terrific tool to help understand especially the mitral valve issues in preparation for a surgeon. He's worried we'll miss the 'window' of being able to do a repair surgery vs. a replacement. He's perplexed with my case, has solicited opinions from experts and thoughtfully advises me wait another 3 - 6 months every time I see him. This has been going on for 5 years since my regurgitation was picked up during a routine physical by my gp.
Last year was exciting (not in a positive way) when my pulmonary pressure went up and Dr. Lurie had an indication that the severe regurgitation my mitral valve prolapse creates was creating a second issue and would need to be repaired.
The timing of the surgery is THE question for me. I understand that is not an option it's just when is the optimal time to get the repair done to avoid a replacement and reduce the number of future valve surgeries.
In any case, my echo showed the pulmonary pressure was down relative to the summer reading and my husband and I enjoyed lunch before the babysitter had to go.
I'm on to another 3-6 months waiting while I continue to jog, eat right and wonder if I'm tired because of my busy life or because my mitral valve is leaking.
Mitral Valve Repair Surgery some time down the road for me..
Journal posted on September 22, 2009
I am 41 and was diagnosed with severe mitral valve regurgitation 4 years ago after feeling some off and on angina around my heart.
Currently, I am being monitored by a cardiologist in Torrance, CA every 6 months with a stress echo. My cardiologist, Dr. Lurie, looks for any change at all during these visits. There has been a slight increase in pulminary pressure over the last year but no other symptoms for him to go forward with a repair at this time. I do continue to have occasional 'twinges' around my heart area (unexplained by the Dr.) but otherwise am completey asymptomatic...no heart chamber enlargement, no shortness of breath, no swelling...etc. I excercise (jog) 3-4 miles most days to stay in shape for when I do have to get the heart repair surgery.
I really believe that I was probably born with the mitral valve prolapse. My Mom and Dad both have varying degrees of MVP and an arythmia (requiring medication). I think having two kids back to back in my early thirties following training for and running my one and only marathon when I turned 30 led to the severe regurgitation. I remember feeling the same 'twinges' around my heart during training and during the pregnancies. The cardiologist doesn't associate my 'angina' with the mvp and or regurgitation but it's in the right area, occured around the same time I was diagnosed and is otherwise unexplained.
My cardiologist has confirmed that our goal is to have my mitral valve repaired prior to needing a replacement. So, it is just a matter symptoms appearing and/or changing and continuing my regular 6 month check-ups.