I had a good visit today with my surgeon. The outcome was that we wait for surgery. There are two reasons why.
#1 He feels I'm too young
#2 I am not eligible ...Read more
I had a good visit today with my surgeon. The outcome was that we wait for surgery. There are two reasons why.
#1 He feels I'm too young
#2 I am not eligible for a repair.....I would have to have my valve replaced. The reason why is because both of my mitral valve leaflets prolapse and both are extremely thick. Those 2 combinations he said make it extremely difficult and pretty much impossible to repair.
He said he felt that if my current condition could be monitored for as long as possible we could postpone surgery and that would be the best outcome for my life. He then said that while I wait cardiac surgery will continue to advance even more over the years and my options could be much better. He said that my 2 options right now would be a porcine valve which could last between 10-15 years and then have to be replaced again or a mechanical valve which would last a lifetime except that I would have to be on a blood thinner which he said opens up a whole other can of worms.
While I was in his office he spoke to my Cardiologist and suggested that I be put on a Beta Blocker medication to lessen the pressure on my heart. He also thinks that may help my Ventricular PVC's. While starting the Beta Blocker he wants me to go through Cardiac Rehab so I can get back to exercising but be monitored to make sure everything is working the way it should and I can have the confidence that I won't pass out dead. I feel pretty good about our visit and guess I have now entered the phase of the waiting game. He said it could be 6 months from now, a year from now, 5 years from now, 10 years from now...or longer. He said he hopes to see me when I'm old. So for now I can breathe and not be concerned about surgery for the moment and be grateful that they will be monitoring me.
Kimberly Biddick Glad you got some answers and feel better about your situation. That always makes things so much eas ... Read more
Kimberly Biddick Glad you got some answers and feel better about your situation. That always makes things so much easier. Did they determine what it was that was causing the ventricular misfiring you mentioned? Is that the same as the PVCs that he is treating you for with the beta blockers? Hopefully that will help along with the cardiac rehab. Keep us all posted!!
Wiliam Height Gladys, that is good but don't be afraid to get a 2nd opinion because I don't think valve disease kno ... Read more
Wiliam Height Gladys, that is good but don't be afraid to get a 2nd opinion because I don't think valve disease knows any age. Severe regurgitation usually needs an intervention especially with misfiring, so timing is critical. I had a similar, very complex diseased Barlow valve, typically found in "young" patients and my surgeon believes strongly in repair vs replacement--do you want a replacement? The right surgeon will repair it. My surgeon co-authored the paper on Barlow disease here:
I have a very good group of physicians around me. Both my Cardiologist and my Primary Care Physician called me over the past couple of days to check on me ...Read more
I have a very good group of physicians around me. Both my Cardiologist and my Primary Care Physician called me over the past couple of days to check on me and see how I am doing. They also were able to tell me more about the Cardiac/Thoracic Surgeon I will be meeting with on Tuesday which put my mind at ease. I will see how I feel Tuesday after meeting with him.
I do feel that through this process of finding out about my condition and everything leading up to this point that the Lord has been aware of me and there with me. I know he cares for my well being as well as that of each one of us going through our different heart procedures and health issues. I know that He is aware and wants the best for each one of us. I feel at peace about everything for the time being and know that if I keep my mind and heart focused on the important and right things in my life everything will fall into place. Sometimes what we want isn't always what is best for us. It would be super easy and naturally comforting to be able to go to a hospital that is known for having expertise in the heart and very highly qualified surgeons. But I also believe that there are hospitals that are still good and have very qualified surgeons capable of dealing with my case even though they are not as well known. I have checked my options over and although they are limited to a hospital that may not be nationally known in dealing with the heart I have faith that I am watched over and as long as I go with what I feel is right everything will work out for the better in the end.
Hoping that everyone enjoys this beautiful Sunday. I am off to church with my family!
Much love-
Gladys
Tammy Pilcher Beautiful post, Gladys! I'll keep you in my prayers too!
Jim Gleason Lovely post. The Pre-op worries were the worse part for me. I was well cared for by a great team and ... Read more
Jim Gleason Lovely post. The Pre-op worries were the worse part for me. I was well cared for by a great team and post-op discomfort was not what my mind had imagined. Keep posting for us all.
Jim Kelly-Evans You're in my thoughts, Gladys...sending hugs.
Nancy D Gladys, I had my surgery at a local hospital close to home and had a wonderful experience! It is a r ... Read more
Nancy D Gladys, I had my surgery at a local hospital close to home and had a wonderful experience! It is a relatively new heart hospital, but was so well run and I felt so comfortable with my new cardiologist and surgeon, I decided not to go to one of the close major centers and I don't regret that decision for a moment. The thought of being away from home, the added stress to my husband, and wanting close follow up care was important for me. You will know what is right for you and although it may not be how others would proceed you have to do what is right in your mind! Stay strong, take good care!!
Gladys Waters Thank you Nancy! It is so good to hear that you had a wonderful experience at your local hospital. I ... Read more
Gladys Waters Thank you Nancy! It is so good to hear that you had a wonderful experience at your local hospital. In my situation with my 5 children and husband, it is definately a better decision to stay close by. I am glad all went well for you!!!
Nancy D as I am sure it will go well for you!! Having you close to home makes it less stressful all the way ... Read more
Nancy D as I am sure it will go well for you!! Having you close to home makes it less stressful all the way around, and if you find you aren't comfortable or your primary doctor is steering you a different direction you will know if that is right for you. I know I did the right thing, and it worked well with less stress!!
As of yet I do not have a surgery date but I will be meeting with a cardiac and thoracic surgeon in my Drs. group. I had a good cry this morning because the ...Read more
As of yet I do not have a surgery date but I will be meeting with a cardiac and thoracic surgeon in my Drs. group. I had a good cry this morning because the hospital and surgeon I wantef doing my procedure are not within my insurance network. I can't find any reviews, etc. on the surgeon I will be seeing and it worries me a bit.
Gladys Waters The surgeon my Dr. has me going to is Dr. Steven Hoff. I wanted and he would have recommended Dr. Kev ... Read more
Gladys Waters The surgeon my Dr. has me going to is Dr. Steven Hoff. I wanted and he would have recommended Dr. Kevin Accola but he is not in my insurance network. 😞
Barry Van Gemert At your age make sure you can find a doctor that can repair vs. replace your valve.
Patricia Garcia Yes Gladys, Barry is right. Just ask lots of questions. I had a repair done in 2002 and it failed i ... Read more
Patricia Garcia Yes Gladys, Barry is right. Just ask lots of questions. I had a repair done in 2002 and it failed in 5 yrs. (calcified with scar tissue around the repair ring). I then had it repalced with an advanced porcine valve that was predicted to last 16 yrs. and only lasted 8 yrs. I just had my 3rd valve surgery 1/12/15 and this time I have a mechanical valve and that is predicted to last my life. High maintance and I pray to God that I don't have to do this again. I am also a mom and have 4 children with my youngest being 2 1/2. My children got me through this. If this is your first time a repair is such a great advantage if it can be done and I pray that it can for you. Don't get just one opinion and settle for one opinion. Likewise to you I have dealt with my Mitral Valve Prolapse since I was around 10 yrs. old and as I got older it started to leak to the point of severe 4+. Also my first valve surgery for the repair was done as a minimally invasive procedure. (under the right breast with a 3-4 inch incision. There are many aortic valve problems and less mitral valve on here, and some have both. Regarless we all have experienced this on here or are going to. Any questions please ask I will help as best as I can. I understand how you feel as a mom. We don't get sick and are the foundation of our family. You will get through this and we are on here to offer support for you.
Meredith Bray I had the same issue - my cardiologist recommended a specific surgeon, then my primary doctor couldn' ... Read more
Meredith Bray I had the same issue - my cardiologist recommended a specific surgeon, then my primary doctor couldn't find them on the list so referred to someone else. Turns out the PCP was using an old list - a 6 year old list! I called the insurance company and confirmed that my preferred surgeon was indeed on my authorized provider list, and then enlisted help from a Humana Patient Advocate. She works for Humana, and has an office at my employers headquarters. Maybe your employer has one? She helped me navigate through the process of bypassing my PCP's referral (to a retired surgeon!) and into my preferred surgeon's practice. Just because the doctor's office tells you something once doesn't mean they are correct. Also, just because the insurance company tells you something once doesn't mean it's correct. This is your LIFE we're talking about, be aggressive!!
Gladys Waters Thank you everyone for your words and advice. My doctor as well wants me having the minimally invasi ... Read more
Gladys Waters Thank you everyone for your words and advice. My doctor as well wants me having the minimally invasive surgery so he is sending me to a surgeon that does that. We will find out on Tuesday if I'm a candidate.
www.mitralvalverepair.org/images/publications/etiologic_classification.pdf