The Date is Set

June 8th. That is the date that has been picked for my surgery. I hope all the doctors can coordinate and the authorizations all happen in the next 22 days. I know things can change and be postponed, so I left room in my head for this to happen. 


Yesterday I met with my Surgeon, Dr. Richard Gates. His specialty is Adult Congenital Heart Surgery. I feel completely comfortable with him. I think he was the easiest surgeon to talk to that I have ever met. I found the most surgeons aren't always "people persons."

So, this is an Edward's Tissue Valve. I don't know if this is the exact make and model, but you get the idea. A couple of great things about this type of valve. I won't need to be on anticoagulants, such as coumadin, longterm. Just aspirin, that wonderful, ancient drug, for 3-6 months. Also, when I need a new valve, as this one is expected to last 10-15 years, I will be able to have a percutaneous valve. I can just imagine how much they will advance in those years.




Next week I go to the hospital to meet with the Nurse Coordinator for the Adult Congenital Program. I get the grand tour and information about my surgery. I will find out everything I want or need to know about my hospital stay and recovery. 


Please feel free to leave ideas for questions I might need to ask in the comment section.

How Amazing is the Human Body?

On the 17th I had my Heart Cath. I remember my doctor coming to see me in recovery and telling me that he did not need to place a stent where my original Blalock-Taussig Shunt. There was no narrowing! I remember him telling me that the area that my Pulmonary Valve should be expanded too much for me to be able to receive a Melody Valve. We had hoped it might be an option because the procedure is much less invasive. I remember that he said something about other vessels, and he did "something" and "something" else. Hmmmmm. Versed. A wonderful drug. Just don't expect to remember everything after a surgery.

That evening, right before discharge, I noticed my back hurt pretty bad. I figured it was from laying on the not so comfy OR table with my arms above my head. The next day I thought it might be muscle pain from laying flat on my back but lifting my head up so I could talk to Jim and Mike. The next day after that I noticed it was more between my left shoulder blade and my spine. Did I call the doctor? Of course not. Being a good nurse I knew my pulse and blood pressure were good, I wasn't short of breath, my nails were pink, so it wasn't my heart.

Over the weekend it really wasn't much better so I reached out to fellow CHDers who both were Cardiac RNs. I have the right friends! Liz said it sounded like ablation pain. I don't remember the doc saying anything about ablation, but sure that makes sense, sort of. Mike said he thought the doctor said something about collateral circulation and it may have to do with that. Maybe that's what the doctor said. Sure, why not.

I could feel two, and sometimes, three distinct spots that it felt like the origin of the pain. I tried to explain it to the doctor on call. Of course it wasn't be my doctor that did the procedure. I reassured him that I was not in cardiac distress and my vitals were good. I didn't need to go to the ER. It was just pain. He suggested I take a boat load of ibuprofen and to call if no improvement. The higher dose did help.

In the morning I got a call from my doctor's office and to come see him the next day. When I saw him, he listened, checked everything. I asked him to explain the things from the heart cath to me again since I wasn't on any good drugs. When he got to the part about the coils he placed in the collateral vessels coming off my aorta I said "WHOA, that's the part I missed." So he got out his pen and drew on the examine table paper where these  vessels were and the coils he placed. He then explained that my body had grown these vessels from my aorta to my left lung. My body was compensating to get more blood to my lungs. He assured me that I will have adequate blood flow to my lungs for right now without them. He said they do this to prevent bleeding during Open Hear Surgery. These collateral vessels have a tendency to cause a lot of bleeding.

I told him that I had massive bleeding problem in my second surgery when I was 16. He looked and me and smiled. He said "Well, you were a pioneer." In 15 years my body had grown these vessels to compensate for my less than perfect heart. These vessels gave me more oxygen so I could function normal as I could. They served me well, but they also almost did me in.

He placed his hand on my back and said this is about were these vessels would be. It was the exact locations of the pain. I am amazed by two things. One, that the body has this incredible capacity to do this. I picture a meeting of the vital organs, someone comes up with the great idea of "Let's grow some vessels from the aorta to the lung and get her some more O2 going on in here." Two, that I am in the hands of such an incredible doctor that did something to prevent a possible complication of my upcoming surgery. 

Still a Maybe for the Melody

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

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....