First , you and your family are in my prayers.
Everything happens for a reason and God never gives you more than you can handle.
Having experienced the full sternectomy I can honestly say the worst part was the anxiety and unkown leading up to the day of the surgery.
You are in good hands and will be better off after the surgery.
Of course the hospital gives you a small heart shaped clutch pillow for when you sneeze or try to get up. You will rely upon it for about two months, my exoerience.
When I got home I slept in a reclining chair for three weeks, the got up the courage to sleep in my bed, the best night of my recovery. I was only able to sleep 2 hours at a time for about two months.....but once you pass the two month time...IMPROVEMENT COMES QUICKLY.
Keep us informed
LAS VEGAS NV
Chris, I have been reading your journals and have you in my prayers. I know its not a cake walk but I had a full monty, sternotomy for mitral repair and doing great. I was home alone at 2 weeks, driving at 4 weeks, walking 2 mile at 7 weeks. I am 54. My repair was success and I personally feel it was because I chose a sternotomy. Surgeon has full viewing. I know its a personal choice and everyone differs but I would rather not be on coumadin. I hate going for the weekly blood work, trying to get levels correct. Whatever you choose, I know you will be fine and it will be the right choice for you. Again, my thoughts and prayers are with you and I know you will get through this and be on the road of recovery soon. Janis Kielbasa
I think that you and I were in Cleveland at the same time, I had surgery on 9/20. Lots of post op weirdness kept me in house for two weeks. However, things have leveled out for me now. I can't imagine what you feel like. All I can tell you is that I will pray for you and your family. I will pray for your strength. You know what, coumadin is no biggie. I am used to it now. Don't let that dissuade you from a replacement. Be at peace and God Speed to you brother.
I have been trying to find some words that would be of some comfort to you, but I'm not sure there are any. I feel so bad that you have to go through this again! At least you will know what to expect this time around, and maybe it won't be so scary? Please keep us all posted on your next step, so we can all send you prayers and positive energy....it truly does help.
Hang in there and stay strong!
P.S. I do remember asking Dr. Griffin (cardiologist at CCF) if it was safer to get a replacerment valve rather than a repair, and he told me repairs are better because there are fewer complications and they last longer. Apparently the "last longer" part isn't always true, but I don't know about the safer part. Just thought I would pass that along.
Best of luck. Your journal first caught my eye because I grew up in Brookfield. You and I are in the same boat I'm - awaiting a mitral valve re-repair operation. I'm scheduled for surgery at Mt Sinai hospital in March. My first surgery was 6 years ago at Emory University hospital. That repair has failed (although not as quickly as yours). I had a consultation with my Mt Sinai surgeon on Feb. 1, and asked him if he personally would need surgery to repair his own valve, and he wanted to look outside of the Mt Sinai team, what US surgeons would be at the top of his list. He mentioned two, one being Dr Gillinov. If you'd like to talk further, my contact info is firstname.lastname@example.org
Just emailed a friend who might be able to shed some light, and or refer you to his doc for another opinion.
I believe his doc was right here at Froedert.
Please forward your email.
Our prayers are with you and we are here if you need us to take your boys anytime!
Chris, my heart (bummed as it may be) goes out to you. I just can't even imagine being in your shoes. I am sure this decision is even tougher than the first was. Truth be told, it makes me feel a little uncomfortable. But I know that things happen beyond anyone's control sometimes and it doesn't mean they did a bad job or made a mistake. Dr. G. does have one advantage over anyone else in that he has already "been in there" and seen the landscape. My prayers will be with you, I hate this has been laid on you. My daughter has a saying she got from somewhere that says "what doesn't kill us makes us stronger, ...has anyone seen my cape???"
I will be praying for wisdom in making your decisions.
After reading your last post, I signed up so I could get a notice when you updated your journal; particularly since I had surgery to repair my Mitral Valve as well last September, I tend to key an eye open for those surgeries. I just did not know what to say at the time. Still do not really; I can not imagine how it would feel to learn your Mitral Valve repair was not working and you were facing another surgery.
I do understand the uncertainty about what to do now. Others have waited a long time to have the surgeon you selected for your surgery to do their heart valve surgery, maybe you did as well. So I suspect he is one of the best available. Between that, and wondering about what will happen in the surgery, i.e. hopefully another repair; or, if not which, replacement valve to use, you have some big decisions to make in addition to dealing with another surgery and its impact on you and your family.
I do hope things work out the best for you and your family!
Hi Chris, just stopping by to see where you are at, so to speak. Has anything improved? Do you have a 2nd surgery scheduled? What was the response from CCF? If you would prefer to answer directly to my email, here is my address. I leave in 3 weeks, and am getting very nervous, not in a very good place the last couple of days. Feel like everything is completely out of my control. Anyway, I have been thinking about you and hope you are in a better place now than your last post.
I know you have to be frustrated with the process but I also know you remain positive, recognizing your family is the most important aspect of your life. From the report it sounds as if the post-surgery leakage is not as bad as originally suspected - Good News! Keep us all posted on any upcoming information. Enjoy life and we'll talk soon.
Well that's a bummer Chris, God bless you, I cannot even imagine how you must be feeling. I'm stressing over 1st, hopefully only surgery and you are facing this. I am so sorry. After reading so many journals, etc. I am sort of getting the idea that mitral valve repair/replacement may be more difficult than aortic valve repair/replacement. Do you know if that is the case? Dr. Gillinov is going to do my surgery, so I will be interested in what he tells you and if you are satisfied (well, as much as you can be). Take care, and I will be thinking of and praying for you.
Sorry Chris, I forgot you already know about how to do everything. I've "talked" with so many on this site, I honestly get the stories mixed up sometimes. For sure call Dr. Gillinov, or go back. The part about getting the disc though....that is still the same...very easy and quick to get it yourself.
Chris....go get your disc yourself. All you have to do is go to the facility that did the test, sign a release and they will put it in your hands. They have to by law. No way you should have to wait that long. Of course I am assuming you didn't have it done a long way from where you are.
You will need reports and discs of all the tests you have had done to send to Dr. Gillinov. I just found it much easier and faster to do it myself. I work in a hospital and it really is no big deal in getting this stuff. They just require that signiture. And it didn't cost me anything for them. That may be different at other facilities, I don't know, but there is a limit to what they can charge if they do.
I'm really sorry to hear your TEE results weren't more positive. I hope you can get some answers soon. When I tried to get my eccho, TEE and heart cath discs sent to CCF, I spent weeks trying to get them from my doctor. They finally told me they only had written reports.....no discs. After a lot of phone calls to many different places, I was finally able to get them quite easily from Waukesha Memorial, which is where I had all my tests done. You need to call the records department at the hospital and then go in and sign some release forms. I hope this helps. It has to be hard waiting. I hope you aren't having too many symptoms. Good luck......I will keep you in my prayers.
I am sorry to hear about your plight. I am also a MV repair patient who just celebrated my 1 yr. anniversary. I was also somewhat devastated to have learned that my valve still leaked slight to moderate however; I learned that the matrix used by the echo, to determine the degree of leakage may not entirely coincide with what the doctor can hear. In other words, take a step back and realize that you have options and that yours may not be as significant as first presumed. Each one of us has a unique situation. If you are not fully satisfied with the information you have at hand than seek additional opinions.
All the best to you. This will be resolved in due time.
Chris, My heart sank when I read about your leeking problems. I wish you all the best, you have two beautiful sons and a wife to look after as you said. Despite the ordeal, I know that everything will be fine for you at the end. Good luck Chris! Christine
Hey Chris - I have found it is very hard to understand God's plan for us, while in the midst of it. Know that you will come through this, and that you have lots of people praying for you, and wishing you well. Merry Christmas to you, Sam & the boys, and good luck on Monday. dpk
Chris, I just had my mitral valve repaired by Dr. Gillinov. My first post op echo showed some regurgitation. They told me it can take a while for the heart to recover from the trauma of the surgery itself. Maybe your echo results are not as bad as they sound. There's always hope to hold on to. Maybe Dr. Gillinov will have words of encouragement when you speak to him. barb tesno
Good luck to you on Monday.Amazed the hospital or Dr.is working Monday(the day after Christmas).Hopefully,the tests will bring good results.You have a bunch of us who are rooting for you.Take care,Here's wishing US ALL A HAPPY ,HEALTHY, NEW YEAR!!!! Ricky
So sorry to hear your news . . . perhaps further tests will show better results. One question - was your surgery robotic???
I had my aortic valve replaced at the Cleveland Clinic (Dr. Sabik) in May 2010 and am extremely pleased with my results and everything that happened at Cleveland. That said, if it looks like you need a repeat surgery, even if you end up going back to Cleveland, I would get a second opinion at a different major heart center just to get a different point of view.
Dear Chris, I am so sorry to hear your latest update. I hope the TEE test comes back with better news. I am having mitral repair December 28th at Nothwestern/Chicago. Have you considered going there for a 2nd opinion? I understand your sadness about the leaking afterwards. I have you in my thoughts and prayers for good news. You will be fine, no matter. Keep us updated. Janis Kielbasa
Chris, so sorry to read your valve is leaking. I can tell you that sometimes the Echo looks worse than it really is, or at least with the aortic valve. Two years ago, my echo indicated the valve area to be only 0.7cm. A follow up cath showed it to really be 1.3 cm. So maybe the TEE will give better results. As far as where to go if you do need repeat surgery, go with what your research and instincts told you before, Cleveland is the best and Dr. Gillinov is supposed to be the best. Sometimes things happen beyond anyone's control and for sure if you go back for a repeat you probably will get "extra special" attention. But I can understand how you might be reluctant. I will pray for guidance as you make the decision, if you have to. Maybe you won't have to. Echo's are pretty subjective depending on the tech who does it, the cardio who interprets, etc. Good luck and keep us updated.
Linda Dixon (didn't need to hear your story, hopefully going to Cleveland to Dr. Gillinov for AV replacement soon, LOL.)
I am so sorry to hear about your status.You are young and will bounce back fast.Your family is with you in this. I am 48 years old and had my mitral valve replaced last year by Dr.Cohn at Brigham and Womens in Boston.Hopefully the news on Monday is a better one and you dont need to go through this again so soon, but in case you have to do this again, consider Dr.Adams at Mount Sinai in New York. Hoping and Praying that you don't have to do this again so soon.
I think of you and your family often, and had expected to hear much different news than your latest post revealed. Not unlike yourself, I feel pretty devastated about the news of the leakage. Nevertheless, I know the ultimate end to this process will be your complete recovery.
We are so sorry to hear your news. We can't imagine how you must be feeling. Try to stay positive! I know that's easier said than done. You are young and healthy and you will bounce back. Take care. We are sending lots and lots of prayers to you and your family.
Shelley and Dan
Chris, just read your post. My MV repair was one year ago. I never thought that the surgery might need to be repeated. I am thinking positive thoughts and pray that you will receive good news on Monday. God bless you. Maria Williams
My heart goes out to you. I'm sure you are searching for some inner strength right now. The only thing on your side is you know the path of recovery and how to take care of yourself. Best wishes. You don't have a choice so be resilient.
Having said that when they looked like opening me up again I was there saying "no way!"- not for at least 15 years anyway.
Hi Chris, I am a 55 year old living in San Diego and originally diagnosed with severe mitral valve regurgation after results from a stres echo. My surgeon indicated initially that therewas too much valve damage to make a repair so replacement was the direction to go in. I requested and received a follow up TEE. The results were much better than the echo and my condition was then changed to moderate prolapse and no surgery is recommended any time soon.
Maybe your TEE will produce better results, I am hoping this for you.
I was very sorry to hear about your news that your surgery may need to be re-done. My own research has led me to believe that heart valve surgery is tougher than many let it be known. I have met several people who have had to have follow up surgery to fix the first unsuccessful operation. Do we know how many re-surgerys are needed?
I love you more than you know and you have NOTHING to be sorry about. We will do what ever it takes. I will always stand by your side. I love you with all my heart. Does Cleveland offer a 90 refund?!?! If not they should... Keep your chin up and just note that the boys and I love you. We will all do what we have to get through this.
I'm 3 months out from a MV repair in September. Still struggling with irregular heart beats here even with cardiac rehab. I understand the frustration and doubt following what was supposted to be the end of a problem. More than ever it seems like the heart has a mind of its own and recovery and healing is different for everyone. I feel for you and your family with such surprising and disappointing news. Hopefully you get better news after the TEE. Thanks so much for posting the update. Good thoughts coming your way. Debby T.
Hi Chris, this is Barb. My husband & I have followed your journey & are so glad things went well. Well be taking the same journey in about 6 weeks. We fly into Cleveland on Sunday Dec 11th, have 2 days of testing and then Dr. Gillinov will robotically repair my mitral valve on Wed the 14. Thank you for sharing your story.
Had minimally invasive MV Repair surgery at USC Sept. 13th am 43 with two young sons too. The night sweats lasted about 6 days for me (started in the hospital, I was there for 8 days). The second night home, I slept with a towel and a new t-shirt nearby to change during the night. I think I have the nerve sensitivity too, I thought it was from rubbing too hard trying to get the leftover tape off, I'll have to talk to my Dr. and see what he'd recommend for that. I'm looking forward to cardiac rehab starting next week. I hope you continue to feel better everyday! Thanks for your post. Debby T.
Hi Chris. Glad to read your post. Sounds like you are doing very well. There are some "weird" physical reactions to heart surgery like the nerve sensitivity you described. The issue regarding stamina was also surprising. Keep the faith - you are young & you will feel stronger everyday, especially after you start cardiac rehab. My surgery was 10 months ago & I can easily walk 4 miles on the treadmill in 60 min. I'm 65 years old & feel 10 yrs younger since the surgery.
Take care. Maria Williams, Ft. Worth, TX
Wow what a ride we had. Just wanted to let you know I finally got out and now I'm supercharged with a pacemaker. OH well. Feeling pretty good and going home tomorrow. Still have a-fib, but it is trying to get back in rhythm. Please send me your email. I would love to keep in contact with you and Sam. Keep up the fight. Glad to be on the other side.
Congrats ... on going home !!!! There is nothing like sleeping in your own bed :) I have been watching your journey as I progress along my own recovery path .... If you have any questions don't be shy I will try my best to answer :)