Debbie cross  Thank you Gabi.I have been praying for Rachel and her family.I can't imagine how difficult this has been for her.So glad you are doing well! I am just afraid of the entire process now,and the"best heart valve surgeons" are all 9+ hours away.I sent records to Chicago and they wanted me to have another stress echo last month,and wear a monitor again.My insurance denied the test.After paying for all the testing,doctors,OR,at Cleveland Clinic(which they had approved)Now who knows.

Debbie cross  Thank you so much for sharing your story! I am in the process of sending my records to Dr.McCarthy.Since I can't have surgery here I want to have a plan in place.The dizziness/fainting episodes have not been as frequent since I have been on Cartia,but I still have them.The fatigue is truely a pain since I homeschool.So nice to hear you are doing well,Thanks again

Debbie cross  Hello Renee, In 2006 I started started having my first dizzy/fainting episodes.I was at the the cardiologist office(had annual echocardiogram)and an intern came in,and very happily explained I would be going to St.Louis to Barnes Hospital to have my valve repaired or replaced!He had not had the opportunity to hear many valves like mine,he said and He was pleased! I on the other hand felt like I had been kicked.You always know the day will come but I had just lost my Dad(Barlow valve) a few months before.About that moment my cardiologist came in and said, yes eventually she will need surgery,but not today.He said he felt it would probably be 5-6 years.My symptoms have progressed.After my stress echocardiogram and then an emergency cardioversion my cardiologist felt it was time for a surgeon to review my records.That was in February.When Cleveland Clinic called in March and said I needed to have surgery within 6 months I began to mentally prepare( like you are doing now)We all know it is difficult,but you pray and look forward to getting surgery behind you and living! To have now actually gone to surgery,and not had my heart repaired is difficult to accept. I am sure my cardiologist is correct, we should get a second opinion.I am just not prepared to go there today.I know how worried you are,but I am so happy you are getting your heart repaired!Can't wait till you are on the mend! Best wishes,

Debbie cross  Deb, my cardiologist said Cleveland sent a letter with the results of my testing.He said the OR TEE had the leakage at a 2 ,but the echocardiogram on Monday(2 days before),and the stress echo in December showed 3s.He feels the deterioration of the left ventricle and atrium,along with the worsening of Afib and other symptoms are clearly reasons to repair.He also said leaking valves handle loads differently and being under anesthesia in the OR is different than up and moving.He found it difficult to understand why they would disregard all the other test.Especially when we were told the afternoon before how necessary it was to have surgery now.

Debbie cross  Joe, I agree, you are having surgery at a great place! I was so impressed with the cardiologist from Mount Sinai that did the Webinar.They explained so much.You and your wife will be in our prayers.Can't wait to read your journal on the other side!

Debbie cross  Michele,church is what keeps me focused! It was strange to read in our bulletin( June 30)that I had heart surgery Wednesday at Cleveland Clinic!Last Sunday a revision! It's really hard to explain.I watched the video Adam posted from the Mitral valve conclave,Dr.McCarthy said many mitral valve patients also have Afib,and leaking tricuspid valves.I have an appointment July 31st. Just trying to enjoy the summer with my youngest! So good to hear from you!

Debbie cross  Michele,I get it about the scar.I guess I was so convinced I would be having robotic surgery that until the day before surgery when the surgeon said I would be having a sternotomy,I had not given it much thought.I actually had another issue that was going to require a plastic surgeon be present(for the robotic mitral repair) The day of my"non-surgery" was our 31 Anniversary.We have been through a lot together! I am so happy to hear that you feel better.Sounds like you made the right decisions! I do believe in miracles, and answered prayers!

Debbie cross  Kathryn, we are feeling weary after this ordeal and very unsure about it all! My cardiologist has requested all test results and I will meet with him in a few weeks.We will just have to start over.

Debbie cross  Gabrielle, I do hope this does not happen to others.I have not heard of anyone else having this experience.I feel like you, It was not meant to be.Thank you for your encouragement.

Debbie cross  Brandy, I have not. My cardiologist has sent a request for my test results and wanted to review those first.I just have to enjoy the summer and have faith this was meant to be.

Debbie cross  Michele, what were you told about your regurgitation/ leakage? The surgeon was so convincing the day before that it was time. Also after Cleveland Clinic called in March and told me I was a good candidate for minimally invasive, we were surprised that he felt my best option was a full sterotomy.( because he said mitral,tricuspid, &afib/ maze procedures) To be honest I went back to the hotel, cried, prayed, and got prepared. When I went to the OR. Wednesday morning I was ready to get this done and feel better! When I woke up on the vent and saw my husband and son I was so happy. I had made it! Then they told me. What really upset my husband and son was the doctors lack of concern.I had the vent, lines in each arm, line in neck(with chest wires),& catheter. They could not find anyone to give orders for removal and/ or discharge until 5-6pm.The only thing the surgeon offered when pressed was I guess you need to see an eleltrophysiologist.( for Afib) Like you I continue to pray.It is difficult to know what/who to trust now.I am sure the fact my father died (2006/just after his 66 birthday) from what seemed to be a lot of bad diagnosing that colors our attitude about this. He had several doctors watching his valve for years. His health was steadily declining. They had done a T.E.E. just afew months before, told him to wait. He went to the hospital in heart failure, was stabilized and had valve replacement surgery. He never woke up. I still have an 11 year old(& 27,28 yr old) When they tell you its time, then oh wait maybe not? Really? I would really like to know how often people wake up on the vent having had no surgery.

Debbie cross  Shortness of breath, tired, fatigue and lightheadedness, almost fainting spells since 2006 have been more frequent. was wearing a monitor and went/sent to ER. For cardioversion in January.

Debbie cross  Deb,thanks, you have been so helpful. I can only hope that they made the best decision (from the O.R. test. We felt we were in the best place, with the best surgeon. I can't understand how the previous testing led them to such a different conclusion. Time will tell. The staff at Cleveland Clinic were wonderful. Yes,so wonderful to hug Jack!

Debbie cross  Once they told me I should have surgery within 6 months, we have been preparing for it.I would have been great Tuesday if the surgeon had said, you're not ready(, our test show)When I woke up I was on the vent,had 3 lines in(one with wires to chest), and catheter. You would just expect a place like CC.to be able to come to this conclusion before this point. Lots of worry,stress,and a VERY expensive stay.Can only imagine my insurance company?

Debbie cross  Shelly, you are correct about the T.E.E I have had them before. I thought that might be 1 of the test they would do.He did not say specifically to Phillip.JUST told him they took a final look from inside and felt it didn't warrant surgery. We are not sure what to believe/ think.

Debbie cross  My cardiologist referred me to Cleveland clinic. Sent all my records,they called me and said Dr.Gillinov felt I should have my valve repaired within 6 months. I needed to wait until school was out. When we met with him Tuesday I said I was surprised about the Tricuspid valve.He said they have much better imaging. He was very upbeat in the OR before they put me under, but barely spoke with me after.we are exhausted. I still have the lines drawn on my body ( could not take a shower)We just left this morning not knowing what to do .

Debbie cross  Hello Deb, We leave next Saturday.My surgery is the 26th. Thanks for the info.I am finally feeling better about it.We really don't have much choice! I read your journal yesterday,it made me more comfortable.Still,the drive back 12-13 hours! Yikes Hope all is well with you!