TOF- a current update

I know I have not fully finished my story of my life with Tetralogy of Fallot up until now, but since I have things going on, I thought I would take the time to share them.

It had been several years since I had seen a cardiologist, and in September of 2011 I decided I should go. I found a new Dr then I had last seen a little closer to my home. I am very thankful that I found one that I really like. He went through my whole history and made sure I fully understood my heart condition and what the risks now and in the future are for me.

In November I underwent a whole bunch of tests- blood work, stress test, echo, mri and a lung function test. Oh yeah and x-rays. When all was said and done- my cholesterol was sightly higher then they would have liked, my heart its self was in good condition, but there was a narrowing in my right pulmonary artery causing my right lung to not get very much blood from my heart. The percentages of blood flow to my lungs is 82% to the left and 18% to the right. It was determined that it would be best to do a cardiac cath.

On March 13th I went in for my cath with the expectation of stents being placed and older stents that I had being opened. I was very disappointed to wake up from the procedure to find that they had not been able to open the area up. They were able to confirm that my heart is doing well.

It has been decided that they will have to do surgery and another cath to open that area up. Part of the narrowed area is inside my lungs and they can not reach that area through surgery, thus the second cath will be needed to open that area up once again.

I will be seeing my cardiologist mid April and will start the process of scheduling the meeting with the surgeon and then the actual scheduling of the surgery. My prayer is that I will be able to wait until early August as from May to the end of July I am running with my oldest son to baseball.

Random thoughts about me

I know I want to get back to telling the story of my living with TOF, but that will happen again another day. Today will be a random thought blog. My 15 year old daughter tells me all the time how random I am.

My husband Dan and I met about 3 weeks after I turned 18. He was 23 at the time. We were married less then 6 months later and will be celebrating our 20th anniversary this year. While things have no been easy; I would not want to go through any of this without him. He has supported me both physically and emotionally that I don't think I could have gotten through a lot of things otherwise.

I have always wanted to be a writer, but have never really share that with my kids, yet they have such a love for writing. My oldest 2 kids are both writing rough drafts of books that they someday hope to publish.

Something that most people who know me are surprised to find out about me is that I love public speaking. I would love to be a speaker. Speech class was my favorite class in high school and it was one of the few classes I got an "A" in.

Something else that some may find odd about me- I really don't like fruit. Unless it is a dessert. Like I won't just sit and eat an apple. I will devour an entire apple pie- with ice cream please. However, I love many veggies- like broccoli and red peppers.

I love to play video games. I am not very good at it, but I do enjoy it. However I am too competitive and start to yell at the tv. If I can't do what I am supposed to do, I get upset.

Ok.. Any questions?

After Christmas

Ahh the holidays are past, the kids were blessed with way too much. My husband blessed me as well. It was wonderful to be together as a family.

This year I really tried to get the little kids to understand what Christmas is really about. That it is even more then being about Jesus as a baby but that his birth was not what he came to Earth for! It was to become a man and give his life as a scrafice for our sins. Christmas would be pointless without Easter.

My life growing up with TOF (Part 2)

My year to year living with TOF was pretty calm. I had doctor appointments for my heart yearly. One of the things that I clearly remember is having to sit on a table for 5- 10 minutes for an EKG. These days that test is much faster. As a 8 year old kid though I hated it. I hated having to just lay there. I also hated going through having an echo. That was another of the just lay there kinda tests. Even today though that is still a long test. I have caught myself many times falling asleep just laying there.

When I was 7 I had my valve replaced. I do remember some of the time spent in the hospital. It was over Christmas vacation. One of my favorite things I remember was ripping up paper with my room mate to throw over the nurses on New Years. I also remember that I didn't even stay awake for New Years.

When my valve was replaced my Dad was told that it would need to be replaced in 7- 10 years. My valve ended up lasting much longer than was expected.

Most of my childhood was lived without medical limits. I was allowed to do what I could without being told not to do this or that. The biggest issues I had to deal with was protecting my heart from infection. The biggest health concern was strep throat. It was an infection that I got several times a year. I was one infection away from having my tonsils removed at one point. When my sister would get a strep throat they often would put me on antibiotics as well.

I had a cardiac catheterization when I was a freshman in high school. At that point they simply put a balloon into my valve and opened it up a little. There were no concerns about needing surgery and I continued on with my life.

At 18 I met the love of my life and shortly after meeting we got married. After getting married my thought begun to think of motherhood. While I did not get pregnant right away there were changes made in how I would be followed from a cardiac stand point. My case was transferred from Children's Memorial in Chicago to Northwestern Memorial. There I was followed by a dr who also specialized in cardiac issues in pregnant women.

My first child was born in 1995. My pregnancy was pretty uneventful until the end. It was at the end that I developed high blood pressure. My son was born at 38 weeks with no complications.

Shortly after my son was born I started experiencing shortness of breath. It was determined that  the shortness was being caused my narrowing in my pulmonary arteries. About 7 months after my oldest was born I underwent another catheterization where they placed stents in my lungs to open them up.

Ok this is where I will stop for now. I will try to get the next blog up soon.

My lif:e with TOF: Tetralogy of Fallot (A heart condtion) part 1

I was born with a heart condition called Tetralogy of Fallot. I am not going to take the time at this moment to fully explain what that is. It is a condition that is encompasses 4 different problems. You can read about it at the mayo clinic siteTOF.

I was 3# 13oz at birth. I spent the first month of my life in the hospital in an incubator.I was not given much chance at life, less than a 30% chance to live 48 hours.

When I was born things were much different then it is now. Surgeries these days now take place when babies are just months old. When I was a child I did have a surgery at 3 months old, but it was not what they call a repair. (Again to save time I will not try to explain what that means here. TOF repair  ) My repair surgery was done when I was 5 years old and 2 years later I had a valve replaced. 

Most of my life was pretty quiet. I went to the dr once a year. I remember having a lot of x-rays, ecgs and echos (ultrasounds of the heart).

I have been told that because of this prolonged time in the incubator that it affected my learning abilities.I did struggle through school. Although now as an adult I am in college and doing much better. In high school i was a C student I am now a B student. I still struggle with my reading as I read very slow, but I am finding that I can do my work better. When I work at it, which is something I am avoiding right now.

 

I hate thinking of titles

It has been a while since I last posted. So much has happened. Maybe some day I will get to blog about all the ways God has blessed our family in the past year or so. Tonight though that isn't what is on my heart. As a mom of 8 I can't tell you how often I hear, "Oh I could never do that! I don't have the patience." I have to be honest.. I don't either. I have had to learn it. There are days that you can tell I still have a long way to go. I get overwhelmed easy. There are days my older two kids look at me and say, "Go take a nap Mom." I do, I need it. Then there are days that all I can do, and want to do is hug my kids and hold them close. I love watching them interact with me, and with each other. It is such a blessing to watch. Today my little 5 year old son was mad cause he wanted to play with the 2 year old sister and the older ones were playing with her. Then this evening the older 5 had some games going and they were laughing and having a good time. I wish I could take credit on how I have raised them, but it isn't me, it is all God. God has brought them through several trials in the past year that has brought them all closer. Yeah they fight, but they have learned at a young age that family is important. Watching them grow and learn is what makes being a mom of many so wonderful. It isn't always easy, but I have learned that most of the time it isn't them that is the problem it is me! I get selfish and mad when things don't go my way. I want them to do the things I want them to NOW and I don't want to wait. That is when every thing that the kids do get on my nerves. Those are the moments that being a mom of many isn't easy. It is my attitude that needs to be changed. That doesn't mean that the kids don't need to be corrected for their behavior, they do, but how I handle the situation sends more of a correction then the actual correction. I am far from the perfect mom, I don't have perfect kids, but I love them and feel so blessed to be their mom.

Veterans Day blog

As I was getting ready to say thank you to those who have served our country in times of war and in times of peace, I realized that I have always been surrounded by veterans. Because I don't know much about my moms side of the family- I really don't know who there has served, but I do know several on my dad's side.

Both my Grandfather and my Grandmother severed in the Navy, as well as my Dad and my Uncle Ken. I did at one point want to be in the Navy as well. There were questions over if I could serve because of my heart issues. I ended up not going into the Navy.

However, the line of service didn't end there. My brother is currently serving in the Air Force. He has been to both war zones several times during his service and has been in several close calls, but I'm thankful to say that he is currently home safe and sound.

Thank you to those I know and those I have never met- for being willing to put your life on the line to defend our freedoms and those around the world that have no one else to stand up for them.