I had my appointment with Dr. Berdjis last Wednesday. I had an echo done when I got there and then Dr. Berdjis and I talked about what it showed. I definitely have significant pulmonary valve regurgitation. The shape of my pulmonary valve still puts me in the running for the Melody valve. If you look at his drawing on the bottom right, the lower part appears to measure 30mm but does narrow to 15mm. 30 is too big for the Melody. Depending on what is found during the Heart Cath of how much the narrow part can be dilated will determine if it can be used. Also during the Heart Cath, Dr. Berdjis will put in a stent at the site of my original Blalock shunt. That can be seen on the upper left of the heart.
If Dr. Berdjis feels the Melody Valve can be done, it won't be done at this time. We will have to get an authorization from the insurance company. Even though it is less invasive, less risk, less cost, it is not a "labeled" use for it. The insurance company may declare it "an experimental, off label procedure". We will then proceed with letter writing asking for approval to do this procedure. This may take up to two months.
If the Melody Valve is not possible I will be facing Open Heart Surgery. Something I never imagined I would ever need again. I do not look forward to having my chest cracked again, but given the possibilities for my overall heart function improvement, I won't hesitate to do it if that if it is the option given to me.
So now we wait until the Heart Cath is scheduled in the next couple of weeks. It will be a short stay, 23 hours at the most.
This explains a Cardiac Catheterization (Heart Cath) http://en.wikipedia.org/wiki/Cardiac_catheterization
Tomorrow, I will have my Echocardiogram. Tomorrow, I hope to find out which surgery I am facing. The less invasive Melody Valve. Here is some information on the procedure. http://www.medtronic.com/melody/procedure.html
Or, option 2, Open Heart Surgery. For you that love to watch surgery, here you go. Warning, it does show cutting, stitching, blood, no guts, because it is a heart .http://www.youtube.com/watch?v=i9jrNh2wFzE&feature=youtu.be
I'm sure you can imagine which I would prefer. I am prepared to go either way. The thought of going hiking, which is something I had never done, is so very exciting. As is excited as I am about that, I think being able to carry my 20 pound grandson Jimmy up the stairs will be even better.
So, until tomorrow....
Since I am facing Heart Surgery in the next couple of months, I'm going focus on eating healthy, cleaning out the clutter in my mind and house, and letting go of some baggage.
So, here I sit sipping my Green Tea without sugar, enjoying the smell coming from the oven where tomatoes, red sweet peppers, carrots, onions, and garlic are roasting, thinking about my future. The veggies will be soup for dinner.
Diet wise, I going to start with NO white sugar, flour, and rice. Timing to start this could be excellent as Jim is going to Vegas for 4 days. I can clean out the frig and the pantry, hit up Sprouts, Trader Joe's and the Farmer's Market. I also warned my friends on facebook the may be getting goody baskets because I can't give up baking.
Clutter, actual physical clutter is my biggest and most annoying vice. Something I have attempted to give up for my entire adult life. I have stupid, sentimental attachments to too many things. I now have such an exciting future ahead of me I need to really to be free of it. Peter Walsh, I need you!
Then there is the mental clutter. I am going to give up getting caught up in all those stupid facebook debates. My husband and my son get caught up in some dozy back and forth posts. When someone posts things that aren't true I will resist the urge to educate. I admit I get so irritated when people disrespect our President, and I try not to respond. So, if you post something that involves politics or religion and I don't "like" it, it probably means I literally don't like it. ;p (winking, sticking out my tongue).
Baggage. Letting go of those things from the past that just weigh on my mind and heart. There is one relationship in my life that is not what I want it to be. I've tried, but it just doesn't work. I'm giving my self permission to let go. I have plenty of people that want to be in my life and I am no longer going to worry about someone who doesn't.
Memorial Day Weekend 2008, spent at one of the most expensive Newport Beach Resorts, Hoag Hospital. That's the joke my husband likes to tell. I had to wait until Tuesday to get my AICD. They weren't going to call in a team on a holiday weekend. Not really a fun vacation, and then 8 weeks off of work to recover.
I was anxious to get back to work. but it wasn't easy. I couldn't help lift patients with my left arm and I just plain ran out of gas before the end of the day. I could feel the AICD pacing my heart. I told my cardiologist this, he couldn't believe I could be that aware of my heart. When I went to the Pacer Clinic it did show that I was being paced 60% of the time. Don't tell me I don't know What I feel!
Work just keep wiping me out. I would be useless the day after I worked. I would tell my cardiologist about this and his reply was "Maybe you should stop working, if you are able to". My manager was great, even offering me 4 hour shifts. It just wasn't fair to my coworkers for me to work at a slower pace. The 4 hours shift never worked either. I was always leaving at least 3 patients still getting treatment to my coworkers. I could see it in their eyes. I imagined the things they were thinking and saying. I tried to make it for 10 months. So I had a talk with my manager and told her I just couldn't do it anymore. It wasn't fair to the unit.
While at work one day I had a chance meeting with wonderful doctor who happened to be an ACHD Cardilogist! I really wanted to be evaluated by him, but he was not in my insurance plan. We did toy with the idea of paying out of pocket for the consultation, but never did. I could kick myself now! I kept telling my doctor how I was feeling and tells me things like "You're fine","You are one of the healthiest people I've seen today."
Jim tried to make it seem wonderful. Like I was "retiring". Inside, I felt like a quitter. After a year of so called retirement, I found a part time paperwork nursing job. I am so grateful to have found the job I have. Not quite as fulfilling as patient care., but I at least I am working as a "nurse" and earning some money to go see my grandbabies.
Last week I finally saw a ACHD Cardiologist. Because of that visit I have a new job. Not literally, but a new focus. It involves surgery, a new pulmonary valve, and a future that will involve RUNNING with grandbabies!
These grandbabies!
Jimmy
Xavier
Jane
Will
I had originally created this blog to reflect on my life with a congenital heart defect. Life took a few bad turns and the focus went elsewhere. Now back to the business of the heart.
My cardiac life was going pretty smoothly five to six years ago. I did have occasional arrhythmias, but nothing that lasted for any significant amount of time. I had just discovered ACHA, the Adult Congenital Heart Association. On their website I learned about the new specialty of ACHD Cardiologist. I have been seeing a highly respected Adult Cardiologist, a "regular" cardiologist. I would question him on in regards to my special needs of care and he would reassure me he has experience with adults with CHD.
I did order a book from ACHA about complications of Tetralogy of Fallot post surgical correction. I read that Sudden Cardiac Death is the most common serious complication. Any complication that includes the word "death" seems pretty serious. Next was arrhythmias.
I am very thankful I only experienced the second most common complication. Because of this newfound knowledge I knew I was in trouble that evening in May of '08. Out of the blue, my heart rate went soaring to 180-200. I came inside, sat down, tried a few Valsalva maneuvers (holding your breath and bearing down) with no improvement. Jim, my hubby, just got out of the shower and I told him "I think we need to call the paramedics." He was so fantastic and calm. Long story shortened, ninety minutes later I was cardioverted with 100 joules, while conscious, into wonderful sinus rhythm. A few day later I became a proud owner of an AICD (automated implantable cardioverter-defibrillator). This was the weekend my heart life changed.
