Hi Mike. I am glad to hear you are in good spirits in spite of the complication you had with SAMs - I had not heard of that before now. Please keep us all posted on how the tests go with your cardiologist. I slept in a reclinder the first 2 weeks after I was released from the hospital and that worked well for me, but it was nice finally being able to sleep in my own bed again! Take care! Denise K
HI Mike,Hope everyday gets better for you. My doctor years ago told me to lay off salt. He said everything you eat has some salt in it and some more than others. That was my triglycerides were high. So I dont use salt in cooking at all and when I go out sometimes you can taste it. Its like licking a salt block, yuck. I try and get everything with low sodium or none at all. You get use to it real fast. There are a lot of other seasonings out there you can use just as well. Keep up the good work
For the long haul
It was good to hear from you. I was wondering how you were doing. I will be at CC on Monday for my pre-ops.
I have never heard of SAM's before.
Was wondering how long they were thinking your physical activity will be limited. Maybe that is something you do not know yet until cardiologist does more tests. I wish you well with that.
I have been doing a "practice run" with the 2000mg of salt. I have had problems the last two weeks retaining lots of water...real scary for me going into surgery. But you are right....salt is EVERYWHERE....does it make you wonder how much we consume when we have a "celebration" dinner like Thanksgiving & Christmas!?! Scares Me..
I hope your recovery finds you getting stronger each day....and I will remember NOT to lie flat in bed when I come home. :)
Yup, getting up and moving really works. Your body is designed to heal, but needs the stress of mild exercise for it to really kick in in high gear. As my GP said, our ancestors couldn't just lie around while for weeks to get better. Or rather those who did are not our ancestors. Evolution at work.
When I was in the hospital at UCLA I managed to go 1, 2, and 3 miles around the ward on the first, second, and third day. Pushed myself. Had to carry a whiteboard marker and put a hash mark on my door each time around the ward to keep track. Made me pretty motivated to get all the tubes out! Also got to meet and chat with other patients doing laps. That was a big help too as we got to support each other during our initial recoveries.
Great to hear you are up and walking...and on your way...
A room with a great view??? Heck could you have them reserve that one for me? I will be there hopefully about July 18th....& maybe stock the freezer with some popsicles... I.have a serious addiction since my right knee replacement in Feb!..
Mark is eating chicken & rice dinners out there in Cali after his OHS....but I just want popsicles!!!......So give them a heads up ok.....with all this hot weather here in Ohio...we may have a shortage....and that will make for a very long stay @ CCF!...lol..
Take Care.....and keep walking & breathing....(and of course...tickin)
Way to go Mike! Now let the healing begin. One secret is to push yourself physically. Just a little bit more than you think you should do is just right. The activity jump starts ancient healing pathways hard won by your ancestors through billions of years of evolution. Your ancestors form an unbroken line of winners - including you! -- DVB
So glad to hear all went well with your surgery and you got a perfect repair! I am 4 weeks post surgery and enjoying a week on Hilton Head Island, SC with my husband, children and grandchildren this week - can't believe how good I feel at this point in my recovery. Wishing you a speedy recovery. Take care and God Bless!
Good luck Mike! Unless you are taking some sleeping pills, guessing it will be near impossible to sleep tonight. Don't worry though, time accelerates at this point and it will be morning before you know it!
Will say a prayer on your behalf that the great doctors and staff at CCF successfully repair your mitral valve. You are in great hands!
I'll be thinking of you on Monday. I'm just starting this journey - consulting with the surgeon in a couple of weeks - and it's really great to be connected (electronically anyway) with so many people who dealing with the same stuff. Thanks for journaling!
Mike, its Tiny again..thanks for replying. I have had extreme fatigue and shortness of breath, edemna, constant fluttering, I feel like iam walking around with weights hung over me...I was diagnosed three years ago with mvp with regurgitation (mild) but since my symptoms have gotten worse. i had an echo this week just waiting on results..she did mention it looked as though i had an extra heart beat. I dont know if thats the mvp or something new. I do have chest discomfort as well..so who knows. I was just curious to see what your symptoms were...I am 37 and was diagnosed at 34.Good luck on your surgery..I will pray for u and your family. Should I need to have surgery I know where to start...Here!
Yes, Chris had the robotic the first time 9months ago, but we found out on 3month post echo that the repaired had failed. This time Chris had it done full sternotomy. He is pleasantly surprised however that the sternotomy is less painful then the robotic was. If you want his story is under Chris Hanson.
Best of Luck, Mike!
It is currently our 2nd visit here to CCF in 9 months for mitral valve repair with Dr.Gillinov. Our first visit we were impressed with CCF and how well it's run. Our second visit (we are currently here) has been much the same. Chris my husband had his mitral valve re-repaired on Wednesday 20th. He is doing very good, he made it to step down unit on thursday around 2pm exactly 24hrs after surgery. He is free of all wires, tubes, and IVs. He has been on several walks around floor.
Just note heart surgeons here are some of
the best. Best of luck to you. Just remember to up with pain med's and coughing and deep breathing. We will say a prayer for you and your family.
I am sitting waiting on discharge update, and had my MVP repaired on Monday. It really wasn't as bed as I had thought it was going to be...waiting WAS really the worst part (not to jinx myself before discharge).
We have two boys (1.5 and 3.5). If for some reason I am not out of here tonight, we MIGHT bring upholder one since i have all my tubes out.
Hi Mike, isn't Cleveland Clinic just amazing? I was there in March for aortic valve replacement by Dr. Gillinov and I was completely pleased! I will have you in my prayers on Monday, I know you will do great! The hard part is almost over!
Linda Dixon, AVR 3/13/12
Just read your journal about younger kids and thought I'd answer your question and share what we did. I had surgery in September (Mitral Valve Repair). We have two boys 7 & 9 at the time. Our 'plan' was not to have them come to the hospital. I didn't want them to have that memory etched in their little sponge brains. Our plan was also for me to be home in 4 or 5 days. Turns out I was in the hospital for 8 and the boys came to visit at day 5 and again on day 6. It was absolutely joyous for me and a big relief for them to visit and see me. We talked with them in a very 'matter of fact' way leading up to the surgery and they got extra big hugs throughout the ordeal. I wish you and your family the best wishes and a very successful surgery!
After reading some other responses I will have to learn more and see what the surgeon recommends about my 11 yr old being there. Like Kate, I too want to think positive, but am also thinking about the 'what ifs' and want to discuss that with my husband this weekend. Not an easy conversation, but one that should be had none the less. I am 45, he is 58 and he has pushed this conversation off for far too long. I started a Mother's Journal years ago and told my son it is his someday. I will begin to add to it again now and remind him that it is for him if something should happend to me. But, we will all be fine, we have the support of our family, friends and each other. Keep up the Faith(I knew there was a reason I was given that middle name). Karen
Sounds like a good plan, Mike. We will do something similar; my husband will be with me Monday and Tues; hopefully he will be home by Wed. I want him back home with our son asap.. I would much rather have him home with our son.. it will make me feel better and ease my mind knowing they are together. Thanks for the prayers; I have moments of super strength and moments of teary weakness.. guess that's par for the course. Thanks again; best of luck to you. KR
Welcome to this site. I have found it supportive; I hope you do, too. I share your concerns; we have a 7 year old. It is rough.. to say the least.
We have told our son that mommy is going to get her heart fixed.. will be away for a few days. I try hard to be very strong and positive in his presence.. as if it's no big deal. I described it to him as a long visit (few days worth!) to the Dentist... something he has done a few times very recently. Like the dentist, I told him it is going to be different and time consuming for Mommy, but once "my appt. is over" I'll be home and all will be fine. I will be having surgery on Monday; I have a week's worth of little notes, gifts for him to open every morning while he is with his grandparents.. silly things.. but notes that tell him how much I love him and that I'll be home soon. I have been advised to not have him come to the hospital - too scary - and I think, knowing my son, it would be too upsetting. I look forward to having him welcome me home through the front door!! On the very serious side.. I wrote a note should God decide to call me home early.. but I hope to never see that again until I am 999!
Best wishes, I think we are all in Good hands...I will add you to my prayers. Kate Rooney
Hi Mike, glad your surgery date is set! Sorry I can't help you with the question about children, mine are 25,28 and 30. Have you heard which method of surgery you will be having?
I had the DaVinci robotic Mitral valve repair on April 25th in Mayo Clinic, Rochester MN by Dr. Burkhart and Suri. They did an excellent job and have tons of experience. I was also told that they have to screen everyone before deciding if they can do the robotic, and they didn't really say what the deciding factors are. Some of it is build, weight, general health status, and my CT was clear. It's only been two weeks and I'm feeling better every day. I am driving, started cardiac rehab this week, and only take ibuprofen or tylenol as needed for pain, which is usually at night or in the morning. I'm on coumadin and a baby aspirin for 6 weeks until the annuloplasty ring epithiliazes, to help prevent clots, then I can stop those medications. The incision/robotic puncture sites are pretty sore that first week, and lots of bruising, but I'm able to do so much more than I thought I would. Good luck with everything ahead, I'll be following your journey!
I just responded to someone else's inquiry regarding how we handle our children thru this. My 11 yr old son is finding solace in talking to his older sister. I never thought about him seeing me post-op..hmmm. I see alot of bloggers seem to wait long for their surgeries. Perhaps I am in worse shape as I was diagnosed at 3am Tuesday and have a surgeon consult on Monday. If you read my story you will learn more. Is the wait because you are not as severe or you want a specific surgeon? Good luck in your journey and I'll watch your journal. Karen
Dr. Sabik did my aortic valve replacement in May 2010. I cannot say enough wonderful things about him and his team.
I specifically asked for him - I got his name from several people highly connected to the Cleveland Clinic. They said he was the best and I have no argument with their assessment.
As for the fact he will be gone after your surgery, I wouldn't be terribly concerned . . . he has a team of doctors, nurses, etc. who will be there to care for you. As Linda said, CCF works differently than many other places - it's a team approach. I think I saw Dr. Sabik himself only twice after my surgery even though I was there a week. I needed him in the OR - afterward I was well cared for by others.
You will meet with him the day before surgery (after 1 or 2 days of pre-op testing.) He will discuss all your options . . . . what kind of surgery, what kind of valve if you need a replacement, etc. He will spend as much time with you as you need. (You'll be amazed at what a kind person he is . . . not my picture of an arrogant surgeon who is the chair of heart surgery at a major medical center.)
As for robotic surgery - I don't know. It wasn't an option for me and even if it had been, I don't think I would have had it. (I know too many horror stories about robotic surgery . . . I prefer the old-fashioned way!)
I'd be happy to talk with you about Dr. Sabik and about CCF. Feel free to email me at firstname.lastname@example.org.
As others will tell you, open heart surgery is not nearly as bad as I'm sure you are imagining. The waiting is really the hardest part.
I had mitral valve repair surgery done by Dr Gillinov in December. I was scheduled for robotic surgery, but once I was in the OR they found that I was "too small" so they ended up doing a right thoracotomy. All the inpatient medical care is managed by the Fellows or Clinical Nurse Specialist, so the fact that your surgeon is going out of town should not be a problem, except is something goes wrong and you need to go back to surgery right away, another surgeon would have to do your reop. Good Luck, Barb
Hello Mike, I am scheduled for surgery with Dr. Eric Roselli at Cleveland Clinic on May 29th. I selected him myself as a second opinion. My cardiologist wanted to wait 6 months and repeat an echo, I was not comfortable with waiting and he was fine with me getting a second opinion and had my records fedexed to Dr. Roselli at my request.
Dr, Roselli reviewed my records then his nurse called me to say he was recommending a repair - I took his next available date. I will not actually meet him until May 25th after my pre-op testing is completed. His nurse stated that he is very confident I am a good candidate for the minimally invasive procedure - but he does not do robotics.
Dr. Mark Gillinov at Cleveland clinic is the only one doing the robotics is what I have been told and he is very good at it, if that is what you are contemplating, however, it may be a wait getting into him.
Do not hesitate to contact Cleveland Ciinic and ask for your surgeons nurse if you have any questions at all about the whole process. I have been on the phone several times with my surgeons nurse and she has been more than willing to take the time to answer all my questions.
I wish you well, and will be following your journal to see how things are going for you.
Take care, Denise K
P.S. Mike, the greatest majority of valve surgeries at Cleveland Clinic are done by the minimally invasive technique. Not sure about the robotic, I know they do it, just don't know how they determine if you are a candidate. I feel like it depends on the individuals own anatomy, etc.
Hi Mike, I had aortic valve replacement at Cleveland Clinic in March. I went through to TCI (to come in) protocol. I had just recently had most of the pre-surgical evaluation test done, so I had to send all of those to them to review. I had specifically requested Dr. Gillinov. It took me almost 3 months for my surgery to be done. Dr. Gillinov is very busy and had just released his book, so I feel like that may have had something to do with it. Even with this protocol, I still had to meet with a Cleveland Clinic cardiologist prior to surgery. They have you come up a couple of days prior to surgery for this meeting (I did not choose the cardiologist). This is just the way it works there. You will also have an echo done there prior to surgery, even if you have already had one recently. Echocardiograms are somewhat "subjective", a lot depending on the technique of the sonographer doing the test and also the cardiolgist reading it. They want their own staff to interview the patient. It's is not that they "dont accept" echoes from other facilities, they just want to see for themselves before peforming the surgery. As for seeing your following surgery, Dr Gillinov came by the following 2 days. But you will be in excellent hands with the nurses, CNA's and other staff. This is, of course, if you have no complications. I suppose that would be something to think about if your surgeon were not there, but they have so many excellent surgeons, I don't think I would worry about that. When you meet with Dr. Sabik (who I hear is excellent) ask him about his plans would be for you, if a surgeon was needed and he was not there. A lot of people don't really understand how the CCF is so different than other places. These surgeons actually work for Cleveland Clinic, not just have priviledges like in most hospitals. They do not have "outside" practices, they only work with Cleveland Clinic patients. They have a very informative website that explains the preop evaluation goes, etc. Good luck and if I can help in any way, let me know!