Aftermath

It's been a little over 5 weeks since my surgery. It's seems like it was a long time ago, yet I'm suspended in a dreamlike disbelief. For over a year, my heart surgery was my whole life. I had to plan, deal, have daily break-downs, have several medical tests, meet doctors and surgeons and get past the holidays. My Caringbridge site took up what little writing energy I had.
It's impossible to get back to normal. Life will never be the same and that's a good thing. I made it through something in which I could not foresee my survival. God was good and I'm blessed! Now, I will express my gratitude by how I live each day. With my body still healing, my mind is open to all the possibilities again. For the first time in my life, I can tell myself that I deserve good things and I deserve to be happy.
Besides the impending surgery, last year was difficult. My mom's health has been steadily going downhill and well as my step-father's. I could not continue grad school with my own health issues. My Aunt Ruth began losing her battle with her health and Alzheimer's. It's still a difficult time for my family and I know this year we will face more hard times. I hope my strength and all the blessings will persevere for all of us.
I am going to try to get back to writing. It's been a long time since I've been actively writing. I missed it! Hope I can write about all sorts of things on this blog now! Life goes on and guess what? I'm still standing!

February 17 is quickly approaching!

I've set up a Caring Bridge Website for my surgery. It will be updated often throughout my surgery and recovery. Please go to http://www.caringbridge.org/visit/lenamorsch
You have to register for the Caring Bridge site (sorry) but I figured this is the best way to keep everyone posted. I hope to be writing more about things other than my health on my blog.
Thanks!

The process

The past several months I've been going through a process. I didn't realize this was something that I needed. I simply thought I was losing my mind. It's been a rough year. Not only with facing surgery, but I feel this year and it's events have been a turning point in my life. I feel the need to make changes within myself and where I am at in life. Unfortunately finding myself has been put on hold. My mom isn't in the best of health and needs our assistance and it's very time consuming. I need to have the farm tended to, phone calls to make, to-do lists to write and work. There is so much to do and I can't think straight. I can't seem to discipline myself to be productive.

Some days, I just wanna lie down, sleep and forget every worry being hammered into my head. The world around me seems to be going crazy along with everyone in it. I'm extremely emotional and even more empathetic of those in pain. I used to get away with a few days of raging PMS in which I'd burst into tears upon hearing some sappy song on the radio or seeing something unoriginal and cheesy on TV. Now it's everyday that I experience these highs and lows. And no, I'm not bi-polar. I'm lucky to have found out that this is normal. It's not easy, but it's allowed.

My Aunt Lula used to say "it's always darkest before dawn" whenever someone in the family was having a hard time. She was right. I realize that when you are faced with such a surprise in life, you have to allow yourself this process otherwise you really will go crazy. I'm in for a fight that I plan to win. I can't deny that I ran from this fear since my last surgery. It has been one of my biggest nightmares- and I've ran face first into it! I've asked "why?" Whatever I feel, I'm going to allow myself to feel it. I'll eventually get past it. This is an essential part of this process. I'm thankful to my family and friends who have supported and welcomed my meltdowns. I'm thankful to my fellow CHD patients who have reassured me that I will be ok. They have been though this and because they are here, they are my greatest hope.

I also appreciate the little things that have come my way to calm me.

The other day, I visited my family cemetery on the edge of the farm Gina and I inherited. I sat on my Aunt Callie's grave, as I have many times before and asked her to watch over me. I cried, felt sorry for myself and told her I missed her (as I often do). When I got over my little meltdown, a family of deer came out of the woods and walked by me. They acknowledged my presence and although I made them a little nervous, they mingled around before passing back into the woods. The beautiful little family of deer passed through long enough to bring peace and comfort to me. I felt good about having a good cry and thanked God for sending them my way (and of course I asked him to keep them safe).

So, please forgive me if I seem like I'm on a permanent PMS roller-coaster lately. This process is what I need and when I get through it, I'm going to be even stronger. :)

Normalcy

Last night I couldn't sleep. I was somewhat happy that I finally figured out how to program the TV in the bedroom so I could watch Roseanne while I fall asleep. My mind started drifting to my ever present worries and then it hit me: a panic attack! I almost got up and erased this blog! I started thinking about how every single detail of my heart condition is out there! I've tried to be normal my whole life and that's why I kept my health private. Then I started thinking about my friend Sarah who passed away 2 years ago after a heart transplant. For those of you who don't know the story, I met Sarah after she moved to southern Illinois with her husband from central Wisconsin. Fate brought us together. We were two girls who wanted to be writers, loved animals and both had heart defects. She even had the same cardiologist as me! I met her as she was getting listed on the transplant list. Four years later, she moved home after her husband declared that he wanted a divorce. She had a blog and wrote about what she was going through. I woke up many mornings with an e-mail from Sarah waiting for me and it always made my day. She had an enormous talent with words- whether she was presenting herself to a friend or the world. I still go to her page or read her e-mails on nights that I really miss her. God, she was the bravest soul I have ever met! Even though I have some big issues, she had far worse than I do. She pressed forward and her faith did not falter. I fear people who don't know me that well will mistake this as a ploy for sympathy, but that's not the case. I'm not exactly sure why I'm doing this, but I know that like Sarah, I should give those, like me, a voice in their struggles. Not many people think about Congenital Heart Disease or understand it. Now, I hope many will.

I decided today to try to get back to my normal routine- as much as possible. The surgeon's office called and set up a consultation appointment for the end of October, so I have that long to consider every question I will have for this man. Until then, I'm going to try to exercise daily, eat right and get my mind, body and spirit in the best shape possible. I know how to fight this fight, I only need to find the faith I once had. I am going to make the choice to believe that this problem (no matter how scary and disappointing it is right now) will turn into a blessing! Perhaps the reason I met Sarah in the last few years of her life was to find the strength that I would later need. She is the true inspiration for this blog, so I hope I don't really freak out and erase it. :)

I have to return to normalcy-the Lena version. This is just a bump in the road...

I have a dentist appointment tomorrow. Not that I ever dread a dentist appointment, but I am welcoming the change! Oh- and I have a hair appointment too! I don't think my hair will ever be normal, no matter how much I hope and pray for that!

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!