My name is Michelle as well and I am facing surgery to correct severe mitral valve prolapse/regurgitation and just found out last week that I will probably have to have a replacement because I have bi-leaflet prolapse. Did you have the same problem? I am just curious as I was told it is very uncommon to have bi-leaflet prolapse and that it would be difficult to repair. So glad to read that your surgery went well.
Hi Michelle-My name is Joan and I am just starting the process of trying to find a surgeon, etc for severe mitral regurg (anterior leaflet). Of course I am scared, anxious about the surgery and hope it can be repaired vs replaced. I am so happy for your progress! You are in my thoughts and prayers :)
Just found this website it is 2AM and I am so very grateful to be able to read some stories. Our son was diagnosed with a proximal aortic aneurysm this past Dec.he is a healthy 34yr old father/husband. I am an RN and have worked in surgery and on the floor and am having alot of difficulty absorbing the news.....finally finding some personal stories is helpful. I will follow your progress and keep you in my prayers.
Excellent news Tim and Michelle. So happy to hear Dr. Gillinov could repair the valve and that it is working well. If you read this before being moved out of ICU, feel free to request a room facing downtown. The views are so nice.
Will say a prayer that you have a smooth, quick and painless recovery these next 4 to 5 days.
I'll be thinking of you tomorrow. You can do this! Remember to keep those ice chips close by and take those deep breaths. The spirometer needs to become your best friend for a while, use it often!!! I will be watching for your updates!
I haven't been on the site for quite a while but happened upon your story tonight. As Deb Z. told you, I had the unfortunate opportunity to have both the robotic and traditional surgeries for mitral valve repair. The robotic surgery was performed in September of 2011 (I was 42 at the time) and the sternotomy was performed nine months later in June of 2012. While the overall recovery time and restrictions were greater for the sternotomy, the pain and discomfort were greater with the robotic surgery. Sleeping was much easier after the traditional surgery as well.
As Deb also mentioned, once the chest tubes are out (I had 3 with the sternotomy) you'll feel much better.
Even though I had to return to Cleveland for a second surgery, I was still impressed by the facility and the staff. It's a pretty amazing place and you're in good hands.
You've gotten good advice from Deb, Linda, Holly, Thomas and all of the others (Hi guys). If you have any questions or concerns along the way, please let us know. I'm sure one (or all) of us can be if some help to you.
Hi Michelle, I'm glad you are going ahead with surgery on Thursday and that you've made a decision on what type of valve to go with. You can see from the replies to your journal that you are in good hands.! I will be praying for you and wish you well.
I did go to rehab for 8 weeks, some of it overlapped with me starting back to work, I just went on my days off. It was a great experience and I am so glad that I went through with it. It helps you build your strength back in a safe environment where your heart is monitored.
Remember..... be the patient and let the professionals take care of you!!!
Go for it Michelle! Dr. G. is definitely wonderful and also a rock star surgeon! It's true what he said about the surgery being scary...it is for us patients, but for him it's just another day at work, not scary at all. When I asked him "what do you do if you can't get someone off of bypass his response was "that's never happened to me". With the thousands of valve surgeries he has done...that made me feel even more relieved and convinced I had made the best choice. I will be thinking of you tomorrow, but let us know if you decide to wait until Thursday.
Linda THE Tiger, aka Linda Dixon
I'm glad you feel better after talking to Dr. Gillinov......I knew you would! Isn't he great?!
I will also tell you that for me, the absolute worst part was the waiting. I wish I could have moved my surgery up a day (or a few months) because I was so ready to get it over with.
I was not a candidate for robotic surgery either, but after reading what Chris Hanson wrote, I am glad I didn't have it. He had his valve repaired robotically (by Dr. Gillinov) and then had to have it redone via sternotomy 9 months later. He said the sternotomy was easier! My pain never got over a 3, and I was expecting it to be excruciating. It wasn't. Your sternum will be numb the first 36 hours, so the only pain you have in ICU will be from the chest tube or tubes ( I only had one). You will be in good hands, and I know you will do great.
Stay strong and Godspeed,
Hi Michelle. I too am scheduled for surgery for Aortic Valve replcement on Thursday at the UVA. I am a Firefighter/EMT and I have choosen the Bovine tissue valve to avoid blood thinners and any potential lifestyle change. I relied greatly on the past experience that my surgeons had with the different valve types to help with my decision. I dont think there is a right or wrong answer on valve choice, you just need to understand each.
It is very interesting to read about such a similar valve situation just 8 months after I dealt with mine. I am similar in age (36) and had mitral valve regurgitation as well. I elected to have mitral valve repair by Dr. Gillinov back in May. It was supposed to be a robotic repair but the robot broke the day before and I learned as I was heading into surgery that we had to go with the conventional approach. However I felt ready for this after reading that Dr. Gillinov does the robotic about half as often as he does his surgeries manually.
Feel free to read through my journal as my wife and I kept updating it throughout our stay at CCF. I also took quite a few photos if you don't mind looking at some significant bruising.
Obviously you know you are at one of the best places in the world for heart surgery. Hopefully you will be able to relax and take in all the info you get from Dr. G tomorrow. I believe that after you speak with him you will be in a better place and understand what is the best route for your situation.
Best of luck and look forward to reading your next update.
I am sorry to hear about the overwhelming amount of information that is coming your way all at once. It is hard enough to process the fact that we need heart surgery in the first place. If it is any comfort, try to rest tonight and let tomorrow be a new day. Your appointment tomorrow will shed more light on your path. As for being a candidate for repair or replacement, I completely understand. I am not an excellent candidate for repair either as my valves are so diseased. However, my surgeon will work on a repair but I have chosen a mechanical valve as my backup plan. My main reason being that I do not want another operation in 10 years when I am older. I will have to take a blood thinner and make lifestyle adjustments but it is a small price to pay in exchange to be able to have a life. We will pray that you will have peace of mind and that the doctors will know the best treatment plan for you. In the meantime, know that you are being supported by all of us.
Thank you for your post. It is so comforting to hear from other people facing the same unknowns. We also appreciate being able to read the responses of others to your posts.
My husband and I will be at Cleveland clinic next Wednesday for 3 days where my husband will have pre op tests for mitral valve regurgitation. Dr Gillinov is his surgeon, too. We know he is not a candidate for robotic surgery and until we meet with Gillinov, have no idea about what procedure he will do. We will return at later date for surgery. My husband is very analytical ( retired physicist) and has tons of questions. This is his first surgical procedure and he is reading everything he can find out about it and is well aware and fearful of what can go wrong.
Like you we will also take a plane. From Santa Fe we face two planes with a change and all day travel. We are worried about that too following surgery. Thanks to you and the people answering your posts, we feel better.
We understand your fears and send you positive energy and sunshine from Santa Fe.
We will look forward to your coming posts and wish you all the best for your surgery.
My name is Holly and I had MVR in April, 2012 at Mayo Clinic in Minnesota via DaVinci Robotic Repair. I am also a nurse. First of all, the waiting is the hard part. You will do fine once that is out of the way. My experience was a very positive one. I was in the ICU for only 4 hours before they moved me out, I was extubated on the table in OR before I ever woke up, so I have no memory of that. Walking was not that bad, if they give you a choice of the chair or the bed, chose the chair!!! My biggest problem was nausea after surgery, but I tend to do that with anesthesia, so not everyone has that problem. I didn't have any problems with a-fib, but when they gave me metoprolol, my blood pressure took a dive, so they discontinued it after the first dose, and never put me back on anything else! I had some problems with my kidneys not wanting to work, but a dose of IV lasix helped fix that! The pain was nothing like I imagined it would be. I thought it would be the worst pain I ever had, but it was tolerable! I had a PCA the first day, but after all the nausea, we stopped it and I switched to Ultram and Ibuprofen, and that's all I needed! I took my first walk the evening of surgery, and it went pretty well. It's hard to describe how your chest and side feel afterwards. My whole right side was numb, and yet had a very "heavy" feeling, lots of pressure, and I had to remember to take those deep breaths! That numbness will stay with you for several months! I had surgery on Wednesday and was dismissed Saturday morning. We stayed overnight in a local hotel and then drove home to Kansas which was about 8 hours in the car. It's really not as bad as you envision it, I had pillows and we stopped every two hours so I could walk around and stretch my legs and body. The bumps were the hardest part! Iowa has some pretty rough roads. You will do fine on the plane ride.
One of the things I feared was getting my chest tube out, as many people have said it is painful, but honestly, it wasn't bad at all. I'm sure there is a difference between the robotic and the "open" procedure and where they place the chest tubes! Mine was right below my ribs on the right, and there were only two of them.
It takes several months to get back to feeling well, even after the robotic surgery. I returned to work after 8 weeks, doing 12 hour shifts and it was HARD! I couldn't believe tired I got. So take it slow, and don't push yourself. It took me a good 6 months to "forget" that I had open heart surgery!
I know you'll do fine, as a nurse you know what's expected of you, just don't try to over-analyze everything!!! Enjoy being the patient and let the nurses take care of YOU for a while!
I'll be praying for you!
I had MVR done via robotic surgery just over year ago (Dec16, 2011)...I have my jurnal here, you can read some of my comments and experienecs there, my name is Ivana Pleic. My surgery was long, about 9h, i was on machine for 4h... but it was success:)
To answer some of your questions: :
*how long Ill be in icu: i was in icu little longer, anout 3 days, due to the very low blood preassure i had after surgery. I did not tolerate medicine for that well, so i was not able to stand straight on my feet for few days, was very dizzy...but that was the only reason for keeping me there...i had chest tubes removed morning after the surgery, pain was alomost non-existant...just overall weakness and feeling sleepy and tired...
*pain control - great, i has no pain, was of morfine second day and on regular pills tylanol+advil every 4h...
*was walking hard?...not really, but you do nto have any energy in you...i remember first shower 3 days after the surgery when i got in my room, with the help of teh nurse - i felt after like i have run ultramrathon twice...very scary feeling...everything feels like major workout, but again, no pain:) *How long before you felt the difference after surgery??...i am not sure, i did not have any symptoms, so it is hard for me to judge...i did have major headaches for many years and there was no cause, mri did not find anything..they dissapear after the surgery 100%:)
*I have to fly home, how fun will that be?....no worries there...you will be comfortable, take pain pills regulary or it will hurt:) you will be very tired and sleep a lot....but that is always good while in plane, right - to sleep? i live 1h from the hospital, drive was ok, i slept:))) after getting dressed, ready to leave hospital etc. you will be so tired only left is to sleep...
in general, i had good experience with davinci surgery...recovery was easy, i was snowboarding 6 weeks after - you can read that in my jurnal...
any question, i will gladly answer you...
Michelle--Another patient standing in line,waiting my turn to praise CClinic. My procedure was the old fashioned AVR, but in some areas there are parallels. First, YOU WILL WALK. You will walk sooner than you can imagine. The stronger and sooner you walk, the sooner you go home. Stair climbing, too.
Pain Control is top-notch. I understand that younger, more muscular people seem to experience more pain. CClinic will keep you ahead of your pain if you let them. The lingering pains that go home with you are "Aleve" type. In all cases, it is up to you to advise on this issue. If you stay ahead of the pain, other healing seems to move smoother.
I went home in a rough riding van, in a wheel chair. After a one hour trip, I walked in the front door alone. I was interrogated at length before discharge was permitted. You will be fine. CClinic won't let it happen any other way.
You asked how long ago I had my surgery, and it was 15 months ago.....October 2011.
Walking after surgery is not painful, but you will experience extreme fatigue. Try to walk as much as possible though. It will help you heal faster. We drove to CCF from Wisconsin, and traveling home wadn't bad at all....it was a 7 1/2 hour drive. I went home the day after discharge, but I was in the hospital a long time due to arrhythmia and blood pressure problems. It is scary thinking about going home after being monitored so closely in the hospital, and then all if a sudden they unhook you and turn you loose on your own. It all seems to workout though.
I had most of my pre-surgery energy back at about three or four weeks and was getting really antsy to start rehab.
if you have any other questions, my email is firstname.lastname@example.org
Stay strong. You will be in my thoughts and prayers.in the days ahead.
I had my mitral and tricuspid valves repaired by Dr. Gillinov at CCFvia mini sternotomy. I was pretty shocked by how little pain there was.....nothing like I imagined. The worst part is the waiting.....I guarantee it! You will love Dr. Gillinov. He is kind, genuine and will answer every concern you have. And he is the ONLY doctor who has ever given me his cell phone number and email. He will respond to any message or email within minutes of receiving it. He told me the only time he won't return a message is if he is in surgery or driving.
I think it would almost be worse to be a nurse and actually know what is really going on. Just stay positive and know you are in great hands at CCF.... It is an amazing place!
Godspeed and good luck!
Hi Michelle, just saw your journal entry and wanted to invite you to read my journal. I had my aortic valve replaced by Dr. Gillinov at CCF in March and I cannot praise him or CCF enough! I was discharged on day 4 and flew back to SC on day 5 and it has been amazing. You will love Dr. Gillinov (if you haven't already met him). If I can answer any questions you might have, please feel free to contact me.
Linda THE Tiger
aka Linda Dixon, AVR 3/13/12
(843) 383- 8732
(843) 858-6492 (cell)
I had an aortic valve repair at Cleveland Clinic 5 weeks ago. The facility is amazing and does stand out compared to other hospitals I have visited. It is their organization and universal friendliness that truly makes them one of the best. In addition, everything at the hospital is well integrated and meant to function as a single entity which shows and makes your stay much easier.
My surgery was different than the one you will have, but I am sure you will receive the same world class treatment I experienced. We were so I pressed that my father was just there for a cardiac consult for his valve and blockages.
Hi Michelle, a month ago I had an aortic valve replacement and a repair of an aneurysm of the ascending aorta. My suregry was very different than yours, well two different diagnoses. But, I had my surgery at the Cleveland Clinic. And, I'm a nurse practitioner. I want to tell you that Cleveland Clinic is an excellent hospital. Every appt, test, etc is very well organized and the nurses are EXCELLENT. You are in very good hands. I felt confident as a patient there. Good luck with everything! Maria