Sunday, April 29, 2012

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. 

Thursday, April 19, 2012

And the Verdict Is.....

A New Zipper or Open Heart Surgery. I am not a candidate for a Melody Valve. The area that one would be placed dilated well beyond the 28mm maximum for the Melody. So, my option is an Edwards Tissue Valve. Next week I will call to make an appointment with the Cardiac Surgeon.

A zipper certainly would make this easier!

During the Cath, my doctor had planned to place a stent in the area of my original Blalock-Taussig shunt. He had found in the past, that the area usually narrows over time and mine was 55 years ago. He found no narrowing at all! That was the good news! He also found that I also don't really have a functional pulmonary valve at all. No wonder I get short of breath with any kind of activity.

The thought of a major open heart surgery is frightening, just because I have done it before. It is something I never imagined I would need again. After all, back then I thought I was "fixed".

I know I have an incredible new life ahead of me after this surgery. My mission with my new life is the bring awareness to all CHD patients that they need this very specialized care. I will also make sure my former cardiologist learns about my new, fantastic, healthily life with NO thanks to him!

Thursday, April 12, 2012

Today is for Abby

This very beautiful girl, Abby, was born with the same heart defect as I was, Tetralogy of Fallot. You can read her story HERE. Monday she was listed for a heart transplant. Her family got "THE" call this morning! She should have her new heart this afternoon.

I found her on facebook a year and a half ago. Her wonderful mom, Nicole, set up a facebook page Abby's Perfect Broken Heart, before she had open heart surgery. I instantly found my heart bonded to hers. She did remind me of Little Joanie, only more outgoing as she faces life. She acts and sings. She is the big sister to five (yes 5!) little brothers.

I made her the quilt in this picture. It was I way I could give her my love and to hug her everyday.  Please keep her in your thoughts and prayers today. Also, please think and pray for the family that gave her the most precious gift of all. Like her facebook page and give her your good wishes. Go to fb link

I can't even be bothered, be nervous, or worried about my upcoming surgery when I have this incredible girl to inspire me everyday. I love you Abby! I am going to come see you after I have my surgery and we will be able to RUN together!

Wednesday, April 4, 2012

Now It's Real

I just scheduled my Heart Cath. Now it's real. It's not something I'm just talking about. I'm really moving forward with the plan. So on April 17th I will know which surgery I am facing.

This feels so different from when I got my AICD. That all happened quickly and no time to think. 

Now there is a date with two weeks to think about it. I never faced a heart cath without my Mom by my side. My mom, who drove me to every single cardiologist appointment my first 20 years. She rented a cabin so I could go to my 6th grade camp when the school wouldn't let me go. My mom, who stayed in a crappy motel for two weeks when I had my Open Heart Surgery. The list is long, but you get the idea.

Don't get me wrong. My family and friends are wonderful and supportive. I know they will be there and do anything I need. 

But right now, I want my Momma.

Billie Jean Carter Gier 9/5/30 - 5/24/02