Roxanne's Guestbook

Roxanne,It was a very costly year for us.Now when my cardiologist wanted test in December(I was at Cleveland Clinic in June)they would not ok them.My cardiologist said he had never referred anyone and had this happen.I was back in the ER last month having a cardioversion because my heart rate got above 200 & would not go back in rhythm.$5500 visit! On another subject,we have a family member who has cystic fibrosis and had both lungs transplanted almost 2 yrs. He is 24 now! Hope your daughter is doing well.Debbie

Hi Roxanne, So sorry for what you had to go through.It's hard enough to have a serious heart problem add be facing surgery.Then do what you had to do to get there and if I got this straight you don't need MVR surgery. I don't know all these terms about heart yet so I don't know how they will treat what they found that's causing your problem. While your waiting for whatever I would sagest doing some research on your problem and see if some natural medicines they don't study or tell people about could help your problem. Or there are things that can help with hearing after surgeries too. Always tell your doctor before you try something due to other Meds. your may be on. Hope everything turns out great for you.

Hi Roxanne- I am thinking of you on this roller coaster ride.. So glad you have support from friends and family... Thank you soooo much for sharing this with all of us. Your posts mean the world to me, to follow your daily posts have been a blessing. I hope you have some good rest time to re put together your life after this major change. Know that you now have some great friends in this group to talk with and share your ups and downs. This group is an amazing blessing to have others to hold us up in the scary down times. Please email me anytime and if you ever want to talk. I'm a great listener and would be happy to give you my phone number...xo janise

I am glad you dont have to have surgery. I have postural orthostatic tacycardia syndrome as well. It is rough . I have bicuspid aortic valve with stenosis.. This site has been such a help. Praying for your health! Best Holly Arnold

I can't imagine the frustration you must be feeling. And more importantly, as you said, now you don't know what to think, who to believe, who to trust at this point..... I firmly believe that TRUST is a critical factor in heart valve surgery. If you are not sure if you trust the CC, seek help elsewhere. You MUST be able to trust both your surgeon, and the health care team that will manage your recovery. My husband had MV repair surgery, performed by Dr.Steven Bolling at the University of Michigan Cardiovascular Center on January 24. Since I had read Debbie's Journal before we had our pre-op consult with Dr. Bolling, I point blank asked him if he had ever taken a patient into the operating room intending to do a MV repair, and upon doing the intraoperative TEE decided NOT to do the repair. Dr. Bolling said he had never done so. He explained that the decision to perform a valve procedure should not only be dictated by the presence or absence of valve dysfunction diagnosed by intraoperative TEE, but should also consider the patient’s comorbidity, and the influence general anesthesia may have on changes in the flow of blood through the heart that may affect the echocardiographic grading of valve stenosis and regurgitation shown on the TEE. Hope you had a much better outcome today, after further discussing your situation with the cardiologist(s) and surgeon(s) at CC. Keep us posted. We encourage you to be your own best advocate. Ask questions until you get the answers you need! With the right team, your will be on the road to recovery and a better quality of life in no time!

Hi! You should read my journal! I woke up in recovery at Cleveland Clinic! On the vent,all the wires etc...to find out Dr.Gillinov changed his mind.I could go on but I won't.I hope and pray you have better care.

Hi Roxanne- My thoughts are with and I so relate because like you I have been told surgery now by cardiologist and not now by the surgeon all within 48 hours. So I got second opinions here locally with one no, one yes, and one maybe. The roller coaster is extremely stressful. I too am now headed 8 hours away to Cleveland Clinic for the final word on surgery scheduled for Feb 20. What I have learned as I read posts and various articles is that when to operate for regurgitation is not an exact science unlike when you have a broken bone or burst appendix and experts disagree. May I be so bold as to suggest you take a deep breath and step back to gather your thoughts so you can identify and ask the questions that will bring you peace. Please keep us updated.

Just take a deep breath and look at this a a trial run. When you have to go the next time you will be better prepared. Be glad that you are not having it early. The longer you put it off the better. I promise you will feel better about this delay very soon. My thoughts and prayers are with you.

Roxanne I hope you have a clear and correct decision tomorrow. I cannot imagine how frustrating this has been for you. You are in my thoughts. Best of success tomorrow,