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!

I heart Autumn!

Tonight I drug out my Halloween decorations! Yay! I love Fall! The colors, the weather, the decor and Halloween! Here is a pic of my little girl, Penelope! She's getting into the festive Fall spirit too!

The heart of the matter (pun intended)

This coming Friday, I am having a test called a cardiac catherization at Barnes-Jewish Hospital in St. Louis. I can't recall how many I've had in the past, but I've been lucky to go over a decade without one. I hate this test! I swore I'd never have to feel the warm, nauseating sensation of that dye running through my veins again! It has been many years that I have felt like a heart patient. This past year, I found out that I am experiencing a condition that many adult survivors of congenital heart defects have, Pulmonary Valve Stenosis: a narrowing and leaking pulmonary valve. I'm not sure why I wasn't forewarned that I could endure this possibility. I'm pretty sure that Dr. Hartmann, my childhood cardiologist, truly believed this wouldn't occur with me. After my last surgery when I was 15, my defects were somewhat repaired. 5 years later, I was taken off all meds and I have done amazingly well. I've always known that I was blessed, but I also thought I was invincible.
I never imagined having a terrible cold this past winter was the beginning of dealing with this. I started grad school, but was barely able to drag myself to class and in class I felt like barfing or fainting many times. I went to my yearly appointment in St. Louis and as soon as Dr. Ludbrook listened to my heart, he detected the new leak over my loud ever-present murmur. I passed it off as an over-reaction or a ploy to have me to run a million tests that I usually talk myself out of. But after an echo-cardiogram, cardiac MRI and a VO2 Max test, the same results. Friday is the finale to see where I stand as far as treatment options. Will I face open-heart surgery again? Pulmonary valve replacement is a possibility in my future. While the surgeon patched up a huge hole in my heart called a Ventricular Septal Defect when I was 15 and grafted a section of my pulmonary artery, ect., it has still (like many patients with CHD) been enlarged and had to work harder. This wears your valves out. Who knew?
I've talked with my close friends about all of this over the past few months. It was devastating news to me. I'd come a long, long way since I was a blue kid. Some ignorant people who find out have said "oh medical science is so advanced, no problem!" or "my grandma had heart surgery, you'll be fine!" Well Eff you!!! That is an insensitive thing to say if you've never experienced heart surgery yourself. It SUCKS!!! Don't say things like that or you can have the surgery for me, 'k?
Something else that sucks is not knowing where I stand. I miss feeling like my old self. Sure, I've always had good days and bad. I always could work out, go to campus lake or a make a trip to the store that wouldn't make me have to go home and sleep for 2 hours afterwards. I didn't battle with 10 pounds of extra weight because I over-eat (from stress and boredom) and don't have the energy to work it off.
Until recently, I didn't want people to know I had a heart condition because it defined me when I was a little girl. I have to own this and like everything else in life, I just have to put it out there! I don't want sympathy, but I do want awareness and understanding about CHD. People have noted that I have changed and that they can tell something is going on with me. I see this as a calling. I want people to appreciate their bodies, health and energy. Regardless of what happens, I am going to get back to the old me.
I have talked to CHD survivors who have went through the same thing and they are doing very well. One guy even told me he plays Hockey! They give me hope and strength on days I feel sorry for myself.
So there it is.
I don't know who holds tomorrow, (as one of my favorite old gospel songs says) but I know who holds my hand. I'll deal with this like I always have. I may not like it, but that is life. I am nowhere near down for the count! I'm just waiting to see what I have to do and if it means a fight, then so be it! My name is Lena: I'm a proud survivor if Congenital Heart Disease!

Please keep me and my family in your thoughts and prayers on Friday.

The return to writing

It's been a long time since I have actively written anything. I have no idea how I developed writer's block- unless it was stress of real life. I decided to start a blog and try to be serious about it. Writing is very therapeutic for me. It's always been the fearless way that I can truly express myself. When I was little, I used to write letters to my parents when I couldn't come out with what I wanted to say. My mom called them my "poison pen letters". I have to admit, when I am fired up about something, there is no stopping me! Granted, I would love to be writing fiction, but as the saying goes: truth (my truth) is stranger than fiction. So, if you decide to read my blog, remember that I am being myself here. I try not to offend anyone, but I plan to speak my mind. This year has been eventful to say the least. I have a lot of things that I am dealing with that I plan to write about in the future. Sometimes I will feel like talking about silly and trivial things, but I am hoping you all can make a little sense of it. Welcome!!!