Introducing myself!

[Kimberly]

Hello, my name is Kimberly and I wanted to let you know I have spent time reading so many inspirational stories of heart and healing here!
I am a 44 year old who was diagnosed in August with a silent MI in LAD, heart failure, LBBB, mild mitral regurgitation, wall motion abnormalities, EF of 50-55%, diastolic dysfunction and I have a 60% stenosis in the right mail artery so CAD. I started Coreg, Nitro, Renexa, teckturna, Imdur, Lasix, lipitor already on metformin for diabetes.
I had my follow up echo in January and had hoped for improvement. The results are now global left ventricle dysfunction with 40%ef, wall motion abnolmalities, enlarged left atruim, and MODERATE mitral regurgitation. I am 2 months into cardiac rehab. I am still SOB and some chest pain.
When the doc gave me this newest info, I didn't ask any questions and I don't have an appointment for 2 more months. I think I was just in shock because my ef had fallen and my regurgitation went to moderate.
With some of this information, because I am sure I am missing some, am I in the "Waiting Room"? Is this something they will want to repair for me with everything else going on?
Thanks for your time and for all of the encouragement that is available from all of you!!

Kimberly

 

[ALCapshaw2]

Welcome to our World Kimberly!

I'm not familiar with all of your issues BUT, when it comes to Complex Heart issues, it is usually best to find Doctors with Experience dealing with those issues. Since your heart is already enlarged, I'm thinking it would be wise for you to start interviewing Surgeons who have experience with your issues. At some point, enlargement can become permanent and NOT be reversible, even with a successful valve replacement. Surgeons like to FIX your heart problems Before the damage becomes permanent. (Old School Cardiologists often prefer to wait for 'symptoms' to become severe before recommending surgery. To my mind. symptoms are a sign of DAMAGE being done to the heart.

The Cleveland Clinic is rated as the #1 Heart Hospital in the USA. How far are you from Cleveland?

'AL Capshaw'

 

[Mentu]

Hi, Kimberly, welcome to VR where many of us share some of your problems. I, too, have some diastolic dysfunction because my left ventricle was damaged by my bad valve before surgery. Some of the medications can assist the heart and at times reduce the hypertrophy when the initiating problem is resolved. As Al said, most of us do not have experience with complex problems such as your's. I suggest you begin by speaking with your cardiologist and ask where you are along the path to surgery. Sometimes they think they have answered our questions not realizing that they were not clear. Ask him again. To ask questions, you don't have to wait until an appointment. I often write them down and fax them to my doctor. He or his physicians assistant will then call me with answers. You probably also want to ask your doctor "How many patients like me have you workied with?"

 

[Greg a]

Kimberly , a heart felt WELCOME to our OHS family glad you are getting some of the information that you are seeking and there is a wealth of knowledge here for the future .....
a list of acronyms and short forms http://www.valvereplacement.org/forums/showthread.php?27413-List-of-Acronyms-and-Glossary

what to ask pre surgery http://www.valvereplacement.org/forums/showthread.php?26668-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/forums/showthread.php?19034-Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well

 

[Kimberly]

Thanks everyone!
Al I live about 3 hours from Cleveland. Its funny you mentioned them because when I was 1st diagnosed in my hometown I did not believe that I really had these problems. So I called Cleveland Clinic with my cath report and echo results and saw Dr. Nair at the Cleveland Clinic about 3 days later. At that point the MVG was only mild plus and we did not talk about that. He focused on the heart failure and other issues including the electrical issues. I wore a event monitor for 30 days and mailed it back to them. I then got a call from Dr. Nairs office saying that there were some conduction delays and PVC's and that I needed a follow up appointment. (originally I had gone only for the 2nd opinion, not to become his patient) After heavy thought, I made the decision to start with Dr. Mark Burkett of the Toledo Medical College University Heart & Vascular Center. He is wonderful and spent a lot of time with my husband and I explaining the issues but again the MVG was only mild. Our first appointment he noticed a murmur which I had never been informed of and ordered the repeat ECHO. This is when the MVG was now raised to moderate and the EF down to 40%. I trust him and decided to stay with Dr. Burkett and it is only 1 hour away. Much more convienent if I have an issue.
I know that if/when I need the valve replaced I would need to find a surgeon and maybe then I could return to Cleveland as they were an incredible group of physicans! How does that work, when you say to begin interviewing surgeons? Do I need a referral from my doctor for that or is this something I do on my own? I think the hospital that Dr. Burkett is associated with has a great reputation but I have never thought about a surgery of that magnitude either! This is so confusing & terrifying!
I read the pists here and I am in awe of the courage and honesty in which you communicaite. This has been so good for me because although I am in cardiac rehab I have not found any solid connections there. The other patients are quite a bit older then me and seem to stick with each other. I find it discouraging at times.
Thank you new friends for letting me join the waiting room, it appears I will have good company!

 

[ALCapshaw2]

A good question to ask ANY and ALL Doctors that you go to is
"How much experience do you have treating patients with my issues?"

When it comes to Heart Surgery, the vast majority (90%?) are (relatively simple) Coronary Artery Bypass Grafts which involve placing a shunt (typically leg vein or mammory artery) into the external coronary arteries. Valve Replacement involves cutting into the heart, removing the diseased valve, and sewing in a replacement valve which is more complex. Surgery of the Aorta is even more complex and is best performed by specialists typically found at the Major Heart Hospitals. Another benefit in using a Major Heart Hospital is that the Surgeon's staff and Nursing Staff have 'seen it all' and know what to look for and how to deal with 'complications' during recovery.

You can start 'surgeon shopping' by asking your cardiologist for his recommendations OR, just call CC (or other hospitals) and ask which surgeons have experience dealing with your issues. Once you identify yourself as a potential Heart Surgery Candidate, most Surgeon's offices will just ask that you send in your latest Test Reports AND copies of the actual tapes / CD's of Echo's, Cath's, etc. When looking for 'second surgical opinions', I've experienced extremely rapid response with appointments in a week or two without referal from another Doctor.

 

[drivetopless]

Welcome, Kimberly, and good luck in your wait. We are here for you.

 

[Kimberly]

Thank you everyone for the warm welcome! I have so many questions!!

 

[nngbwh]

Hi Kimberly and welcome aboard. You came to the right place for questions. We are all here with you. Shoot the question away.

 

[Nupur]

Welcome, Kimberly! We are the same age, and I am a mom (of just one : )
I don't know much about the other issues except the mitral regurg. There are many others more knowledgeable than me. I just wanted to say "welcome to this wonderful community".

 

[Johnz]

Hi Kimberly. I've only had the mitral valve issue (and ventricular tachycardia, to boot), but I'm glad you joined this forum and can take the valuable advice people want to share. I'm a huge fan of the Cleveland Clinic for comlex heart surgery, fyi.

 

[Eva]

Hi Kimberly and welcome aboard. :smile2:

I answered your other post before reading this!

Depending on your insurance, you may or may not need referral to interview surgeons. One of the questions that come to my mind to ask the surgeon if he will be the only one who will operate on your heart. If he needs assistance, what is their experience? Do not feel shy. You are the employer here and the surgeon is your employee!! A bit of good news to share with you is that my left ventricle which was quite enlarged before my surgery dropped back to normal size three weeks after my surgery.

Welcome aboard again and ask as many questions. I always repeat to my husband that I wish I had found this great community long before my surgery.

 

[Rosebud54]

Kimberly, if I was you, I would go to the Cleveland Clinic and get a second opinion. 3 hrs is not that far. I only have two things wrong and my doctor's are not waiting around. God Bless.

Carol