Cindy's Journal

Rose Madura  If i had this concern, I would either ask a social worker (hospital could help with that) to suggest which place would best serve your dietary needs.  Or, call around yourself to rehab facilities and ask them.  You have to be your own advocate most of the time.  Godspeed.

Marie Myers  Certified Rehab facilities should have a dietician that would handle questions and concerns  like that. I would directly call the place and ask to speak with the dietician.

Rita Savelis  Most facilities should have dietary choices. Call ahead and find out. Otherwise eat what you can and you'll be fine even eating less than normal. There are always vegetables and fruit on offer. I didn't have much appetite for a long time after OHS and just ate vegetable soup.

Susan Lynn  I had dietary choices at the hospital.  I mainly craved fresh fruit and no one gave me a hard time about ordering it.  I'm sure any healthcare facility could provide gluten-free options.   Best of luck! 

Deena Z  Protein is your best friend post surgery, so wherever you go, request a high protein vegan/vegetarian diet, if you do not eat meat or fish.

Yumiko Ishida  I think a lot of it depends on your insurance and local regulation. In Arizona, where I live, a regulation went into effect relatively recently, prohibiting providers for charging out of network rates if the service was refer to them from a hospital that is in network. Before that, I was being charged out of network rates for services the hospital sent out, mostly labs. Most of them accepted the in network rate once I complained about it, but it got a little messy. I strongly encourage you to talk to the hospital before your surgery. Most of them offer a payment plan. The biggest cost is the hospital stay. In monetary terms, the surgery itself is pretty straightforward. 

When I had a stroke two years ago, it was unexpected, and I had to pay back the hospital in installments. For my surgery this year I planned ahead, but am still trying to figure out exactly what I owe, 8 months later. The hospital statement is not very clear, so I am relying on my insurance’s claims records. The insurance records tells me who filed a claim, the amount, what the insurance allows, what they paid, and what is my responsibility. In my experience, insurance records are more accurate than the hospital bill, so don’t take the hospital bill at face value, and insist on paying them only what your insurance says is your responsibility.

David Augustus  You can read my story and journal as I had my bicuspid aortic valve replaced 10 years ago.  Finding this community is a great start.  Find a surgeon you trust and believe that you will be better than before.

Richard Munson  You need a good cardiologist, and a good surgeon and a good hospital that specializes in mitral valve surgery. More than one opinion is important. Then you can get into specifics regarding your valve issue. In my eyes the biggest question is can it be repaired instead of replaced. If possible repair is a better option. Other options are minimally invasive vs. full sternum surgery. A fib considerations etc. i ‘m sure others will have thoughts. Maybe some in your area can recommend hospitals and surgeons. 

Richard Munson  I also forgot an important thing. You need to take control of this process rather than let it take control of you. I always say. You are your number one health care advocate. I think most doctors appreciate an informed patient. Stay away from the ones that don’t. 

George Gardopee  Hi Cindy. You have definitely come to the right place for information and advice. I strongly second Richard’s advice about finding a surgeon (and a hospital) that excels with mitral valve issues AND that can repair rather than replace.  I was almost pushed into replacing my mitral valve after having endocarditis but what I learned on this site convinced me to seek a surgeon that does repairs as mitral valves can be repaired a very high percentage of the time.  I was also beyond terrified for the 18 months between my diagnosis and my surgery.  I found the anticipation to be much worse than actual surgery and recovery. 

I was able to get mine repaired at the Cleveland Clinic (which I can highly recommend), but I also got surgical opinions at AGH in the Northside  (I am also in the Pittsburgh area, by the way.)  The “Surgeon Finder” feature on this site is useful for locating specialists in mitral valve repair.

Ask anything here - the members on this site are very generous and extremely supportive. If you have the patience to wade through it, I have detailed my experience in my journal.

Michele Renee  Hi Cindy! I am now 7 months post op from mitral valve repair. I am 47 years old and was diagnosed with MVP at 35. My biggest advice, like others have said, is be an advocate for your own health! Originally I was referred to a surgeon with not much experience with repairs only replacements. So I pushed to find someone with more experience. My cardiologist referred me to cedar Sinai in which I researched and found a surgeon that honestly made the entire process not so scary. She was kind, comforting and her entire staff was amazing. I had to go through some insurance struggles, but it was worth it. 

The surgery went well, I did have affib after surgery which is a typical side effect. The biggest thing I suggest is having someone to help for at least the first month of recovery with food, errands, etc  because you won’t be able to do much or drive for a bit. 

I took the full 3 month leave from work, and am thankful I did. I also started cardio rehab and that was a lifesaver. Really helped me get my energy back. 

Be prepared, it’s just as emotionally challenging as physically challenging. I have always been healthy so I thought the recovery would be easy. It was longer than I expected. But it’s all worth it! I feel a million times better after having the surgery and am back to my everyday life. This site is amazing for any little things that come up, having a support system and people sharing the same symptoms or side effects after is extremely comforting!

If you’re on the west coast I highly recommend Dr. Joanna Chikwe. She is amazing in every way and truly saved my life.

You got this!!!! 

Susan Lynn  Cindy- Welcome! You've already received wonderful advice. I'm also from Pennsylvania, but the other side of the state. I had minimally-invasive mitral valve repair at age 57. As George mentioned, the waiting is worse than the surgery and recovery. Don't let your imagination run away with you. Heart surgery has come a long way! Do your research. Find the right surgeon. You'll be putting this behind you before you know it. We did it, you can too!