Post surgery

It has been 3 weeks since my 4th open heart surgery. I am doing pretty well. I have had my sister and at least 1 friend say they can tell the difference already in how I look and how I sound. My sister said that she could tell almost immediately how much better the color in my nails looked once I got out of surgery.

So how am I feeling now? Well my body decided to go ahead and get a cold. Not just any cold, but a pretty bad one. I am doing better today then I have the last 2 days, but I am still feeling pretty sick. At moments I feel like I am wheezing. It is not a feeling I have felt often. I am seeing my cardiologist on Tuesday. I am sure that he'll listen to my lungs then. I did call him and he didn't feel I needed to go in unless my symptoms got worse.

The pain of the surgery is starting to get better. I'm not hurting quite so much. There are still moments where the pain is pretty bad. I had bad pain day the other day. It was also the beginning of this cold. I am having a little more pain now because of coughing so much.

I am so thankful that the way they do the surgeries has gotten better. I am thankful for not being so drugged up this past recovery. The day after my surgery they wanted me sitting up in a chair, 3 times a day for an hour each time. They did this around meal time. It was so hard to sit there. I did end up sleeping in the chair, which was what they expected. During the lunch time sit, I couldn't make it the full hour.

The next day was a little better. I sat up more. Oh another thing that I loved was that once they took the catheter out, they had a commode that I could have next to my bed, no bed pans! hehe that was nice.  

open heart surgery

I am scheduled for what could very well be my last open heart surgery that I will need to correct my heart condition. I will be receiving a new valve at that time. This valve is expected to last 15+ years, at t hat point they could (by current medical abilities who knows what it will be then) just place a new valve next to the old one by during a cardiac cath.

It has been amazing in so many ways to grow up with a heart defect. It has allowed me to really see how much we have learned over the years about the human body. Many of the ways that they repaired my heart just 35 years ago, they no longer do.

I have to admit that I am very nervous about my surgery. I am worried for my children, especially my young ones who don't fully understand. I worry for my older ones who do understand way too much and are too much like their mom in the worry department. Added to the fact that this past year has been very stressful for all of us.

I do feel confident in God that I will get through this time. That there is still a lot God has for me to do here on this earth. A year and a half ago I started this journey towards surgery and as I was reading God's word I came across these verses. I stand still today confident that this is God's promise to me.

[Phl 1:21-25 NASB] 21 For to me, to live is Christ and to die is gain. But if I am to live on in the flesh, this will mean fruitful labor for me; and I do not know which to choose. But I am hard-pressed from both directions, having the desire to depart and be with Christ, for that is very much better; yet to remain on in the flesh is more necessary for your sake. Convinced of this, I know that I will remain and continue with you all for your progress and joy in the faith,

Tetralogy of Fallot and Pregnancy

There seems to be some debate and concern about me getting pregnant again. Much of the debate is simply over not having facts and only knowing that "Kayte has a heart problem."

Now I can understand many concerns. I have not always followed doctors advice and I have not been followed by a cardiologist in several pregnancies. So I do understand the concerns and am learning from my past.

I do want people to know that this pregnancy I will be followed closely by my cardiologist, I emailed him the night I found out I was pregnant to make sure he knew that I was pregnant. He called me about 10 am the next day to talk over my first how I felt about being pregnant and to go over my past pregnancies. He is very much aware that I have had home births and that I was not followed for some time by a cardiologist. I have not hidden any information from him. When I first met him a year ago, we went over all my past pregnancies. He told me at that time, and in not the exact words this time that my heart condition tolerates pregnancy well. That is not to say that there are not things that he is concerned about.

There are 2 main areas in which he said he is most concerned and will be watching. The first is the delivery of the baby. The main concern there is that I don't push too long. He also said that he did not feel that this was going to be a big concern. This is an area I have gotten rather good at LOL. The last 3 or so babies have come out in less then 5 minutes of pushing, and my last guy was out in 3 pushes, it won't be too bad.

The second was the first few weeks after birth. He asked me how my energy was after the babies were born and I had to admit it was worse then when I was at the end of the pregnancy. He said that he hears that a lot from women like me. He also explained that the placenta absorbs much of the extra fluid in my body for the baby and makes it easier on my heart to pump that extra fluid. It is once the baby and more so the placenta is delivered that it can be harder on my heart and there I will have less energy.

I was so thankful to hear that news. I had been struggling for years to understand why so many of the women I knew while they were tired didn't seem nearly as wiped out 10 days after birth as I was.

The current plan for me is to see him at the end of October and see the high risk doctors at the same hospital. I will have 3 echos, one each trimester. He sees no reason right now that I can not have a natural childbirth.

It is also important to know that over the past year I have undergone a lot of testing on my heart, so they have a pretty good idea of where I am at.

If you have any questions feel free to ask and I will be more then happy to answer any questions.

Also this blog is not intended for medical advice, this is simply my experince and I want to share it so that others can be encouraged.

God's curve balls

As some of you may have seen I have a heart condition called Tetralogy of Fallot. After going through extensive testing November 2011 and a cardiac catheterization in March of 2012 it was determined I would need open heart surgery followed by another catheterization to fix an area going into my right lung to open it up and allow more blood flow into the lung.

The surgery was planned, the date was set. I got things taken care to make sure my children were taken care of. All we had to do was wait for the date to arrive. Sounds simple right....

Well God has decided to throw me a curve ball. Instead of having another surgery, I am having another baby. Yup baby number 9 is currently being formed. I have to admit I have freaked out a lot. I have freaked out at my older 2 kids (glad that understand and love me anyway. ) I have freaked out at God.

I have to be honest and say, at this point I am not sure how I feel about the idea. My emotions go back and forth.

What does my cardiologist think? He supports me and while he wants to watch me, he is not overly concerned. He feels that my heart can handle the pregnancy just fine.

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.