One Day At a Time

Yesterday was a long day. I left home around 5:00 a.m. in order to have plenty of time to get to St. Louis for my cardiac cath check-in at 7:30. Matt drove me and was by my side all day. I was apprehensive about the procedure due to past experiences, but this one was much more tolerable! The procedure took around 2 hours and I was given some good medicine. The nurses were very cool and we joked around about vanity, class reunions, cats and God knows what else (or maybe I dreamed it). At one point, I heard Dr. Ludbrook suggesting that I be given more sedation. Perhaps I was blabbing too much, but I didn't feel much of anything until the end where the artery had to be sealed. That felt as if I was having a nail driven up my groin! Ouch! I had to stay in recovery most of the day to make sure the artery had clotted and I was OK to go home. I also had to wait for Dr. Ludbrook to go over all the data and photos he collected during the procedure. I'm very lucky to have such a reputable, experienced cardiologist that specializes in congenital heart disease.

I was hoping that he would come in and say things looked better and he didn't see any reason to consider anything, but deep down, I sorta knew he wouldn't.

My pulmonary valve needs replaced and I expected him to say as much. What I didn't expect is that he found my VSD patch that I received when I was 15 had torn loose. The patch was placed in my septum during the surgery to form a wall. The hole had been so large that I basically didn't have an inner structure to my heart.The patch had a small leak over the years, but it hadn't changed. Now, I'm walking around with about 1/3 of it loose and flapping around, thus the hole in the middle of my heart has returned. I also have scar tissue around my aorta that needs to be removed. This is all consequential of the defects and patch. Funny, but I don't feel that bad!

I asked a million questions and nervously laughed as if I was in disbelief. Matt looked like a pale puppy that had been kicked in the side. I feel really bad for him. I am sure he never expected all of this when we started dating. He has been such a prince during all of this!

Dr. Ludbrook wants me to see a surgeon and this is the next step. He welcomed me to a 2nd opinion and he told me I have the right to choose however I want to deal with this. The surgeon is chief of cardio-thoracic surgery at St. Louis Children's, where I had my 2 surgeries as a kid. Why am I seeing a pediatric surgeon you ask? Because they have the expertise in repairing congenital heart defects and this is who I need since a regular heart surgeon doesn't not have the experience in these defects. I don't think I can find better anywhere else.

I am overwhelmed at the moment. I have many things to research and consider. Do I wait until it gets worse (and Dr. Ludbrook said it would) or do I opt to have surgery sooner? If there was a guarantee that I would make it and be even better, then there wouldn't be a hesitation. But, there are risks. You think you'd know how you would handle this if it were you, but trust me, you don't. I'm scared and frustrated. I never expected this to be reality again. I have to wrap my mind around it. I'm lucky to have fellow CHD patients as a support system at this time. They have been a comfort and a inspiration.

I am heartbroken over the worry I am causing my family, friends and Matt. They feel helpless right now. They are used to me being take-charge, strong and in good shape. I want to be that person again. Life- and health is such a blessing! I am not invincible, but I'm hoping to find the inner-strength I once had. Wow, I have overcome a lot! I choose to believe this has happened for a reason and from this experience, I can share it and make a difference. I'm going to ask God to spare me once again. I have so many things I want to see and do. I pray that I live to be very, very old! :)

In time, I will make the best decision for me. Ultimately it's my battle. Until then, I am going to take it one day at a time.

Once again, I appreciate those of you who have taken the time to read my blog. I hope to write about more cheerful things in the future, but this is part of my life and I have to vent. Feel free to comment below!