Dear Diary – I am getting a shiny new valve

Verse of the Day:
“Therefore, since Christ suffered in his body, arm yourselves also with the same attitude, because whoever suffers in the body is done with sin. As a result, they do not live the rest of their earthly lives for evil human desire, but rather for the will of God.” – 1 Peter 4:1-2

This post is an entry from my diary. It is ramblings of how I was feeling 24 hours before my heart surgery and the weeks following. I am sharing this because I have been emailed by several people recently who are facing similar surgeries. It is not an easy path. It is very scary to say the least. I hope it helps  someone by hearing my point of view. May God bless those going through tough times.

Tomorrow I Get A Shiny New Valve!

My Thoughts 24 Hours Prior to My Mechanical Valve Surgery…

May 21, 2009

Well tomorrow is the big day! Today is my last day to write for a few. Milk of Amnesia ( this is what I call the delightful cocktail I receive right before surgery) will be my friend for the next three or four days. I told Ryan that if he has anything he wants to say to me that I won’t remember tomorrow and Saturday so it will be a perfect opportunity for him to get anything off his chest!!! 🙂 He is being so strong… I know he is worried, we are both sacred, but he is so very supportive. He makes me laugh and every time I start to get nervous he just makes it better.

I think that I will be just great. I hope I will be. I did not sleep last night though due to the whole combined 2 minutes of bad memories that I remember of my last surgery in 1992 haunting me. All I can remember is waking up and hearing my mom say, “put her back out.” Oh, and having my chest tubes pulled out… no good… uhhh…. My one good memory from my first experience was waking up to my Daddy saying, “Look baby, you’re pink!”. I don’t think much can top that! After tomorrow I will have new memories and I am praying it will be a completely different experience. A month or two from today I will be feeling so much better!! This dang heart, I will squeeze the life out of it myself if I have too… thankfully the doctors are more than happy to help do that for me!

I am rambling today… mostly because my brain and my emotions are on fry! My poor husband looks like he hasn’t slept in years and we all know he will be too stubborn to sleep for the next few days. The Moms (my mom and Ryan’s mom) are here.  Dad and Momma Pam (my stepmom) will be here around 4 p.m. We will meet with the Dr. Dearani at 4:30. After that I will have my last real meal for the next two months… I am having some slap your momma good BBQ ribs and baked beans! Amazingly Rochester makes some mean BBQ!

I am not sure if I will be the first or second in the operating room tomorrow. They won’t tell us that until the morning. I am praying that someone will give me some drugs around 7 p.m. tonight that will knock me out. Ambien is not doing it for me!

The show is about to start and I am going to throw up! Lord, bring on the adrenaline and make this the best show of my life!

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The Day of My Surgery… (not in my diary)

*The morning of my surgery I woke up at 4:00 am… I hadn’t slept at all. As a matter of fact I actually tried to leave somewhere around 2:00. But I decided my life was worth living and God was bigger than my fear. I spent the next two hours watching Ryan sleep in the crappy hospital make-a-bed chair, staring at the clock and praying for God to take away my fear. I needed some peace and I needed it right then. The drugs they gave me to calm me down and help me sleep had not worked and my wonderful nurse Chris was not able to give me anything else. I was a hot mess!

So at 4:00 I took a shower and scrubbed myself with this soap they give you, dried my hair, put my fashionable gown on and was ready for surgery. Then I waited. My parents came to my room at 5:30. When 7:00 rolled around and I was still in my room we found out that I was not going to be the first surgery of the day, I was going to be the only surgery that day. Dr. Dearani didn’t want to be tired or rushed. He wanted to be focused. This was no ordinary valve replacement, and I was no ordinary patient. I was still so nervous, so he graciously gave me some sort lovely cocktail to calm my nerves. Around 10:00 am I dosed off in Ryan’s arms as he sat next to me in my hospital bed. At around 10:30 they came to take me to the OR. I said see ya later to my parents, hugs and kisses and I loves you’s all around… and then Ryan walked me to pre-op. He smiled the whole time. So brave for me. I cried the whole time. I had complete faith in my God and in my doctors but I still laid in that bed not knowing if I would ever see my Ryan again… and it wrecked me.

5 hours later I was out of surgery… Dr. Dearani said everything went great! By 6:30 am the next morning I woke up and I called Ryan and I said, “baby I am awake!”.*

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My Recovery Week by Week

Notes from my Diary…

May 28, 2009

The last 7 days have been the hardest 7 days of my life but they are behind me. It is going to take me a while to get back to my old self, but my hopes are high.

I am home trying to adjust. The pain meds I have made me sick, I have no appetite and I am pretty sure that if Ryan says “eat one more bite for me” I might throw the food at him. I am trying and so is he. He and I are both exhausted. I can’t get comfortable to save my sanity… every move I make hurts. Breathing really hurts and my neck and my back just make me want to scream. This by far is the hardest part of the process… healing. Ryan and I are happy to be home with Krissy who is treading lightly around me. She knows that something is wrong with mommy. She growled a little at Ryan last night when he kissed me. It was funny. It is nice to know she’s got my back! 🙂 The weekend will be revolved around finding a comfy place to rest, moving around a little and sleep a lot.

The scary part is behind me, the hard part is in front of me and I am just going to keep trekking right along. If I could just get use to the way my heart feels and the clicking noise it makes that would help a lot too. I keep waking up thinking, what is that ticking??? Then I remember that it is me!

June 2, 2009

This morning I woke up hurting more than I have since this process began. My left lung where they took the lung tube out is hurting beyond belief. It feels like a stabbing pain shooting into my lung and sending pain to my whole body every time I breathe in. This pain is a lot more severe than I expected it to be. This whole process is much more difficult. I am having to depend on Ryan and his sister Kelly and others to help me do everything. I am not used to being dependent on people. It drives me crazy. My frustration level is high because I feel like I can’t do anything alone. I am learning to let people help me, but I am a bad student!

I have a long way to go, Friday will only be two weeks. Everything happened so fast at the beginning that I feel like I am in slow motion now. I am praying for God’s strength and peace to be with me now. I am also praying that he gives Ryan some peace too. Ryan has been so good to me. I know that he is frustrated too. It is hard for him to watch me in so much pain and not be able to do anything about it. Sometimes there is just nothing that he can do for me. But he is doing a great job and has a gift of being a great caregiver. I am blessed to have him.

June 15, 2009

Well Friday marked three weeks since my surgery. The last week and a half has been rough to say the least. I cannot stop throwing up. Today was the first day that I actually kept all my food down. Throwing up makes every part of my body hurt and it also makes me feel like my stitches are going to pop open. Oh yea, they did. My machete cut in my left leg (a 6 inch vertical cut over my femoral artery) burst open in one place. You can see one of the stitches poking out. Not only does that hurt but it is gross. A few days later I was trying to change my shirt by myself and my sternum scar bust open in a spot right between my ladies. I think if I had bigger ladies and a little cleavage I might not have had this problem. :)~ The doctor said that it should heal itself. I just have to put some peroxide on them twice a day. They aren’t healing as fast as I would like but nothing is really. He also said I need to take it easy and let people help me more. More? I feel like I can’t do anything myself! It is nice to have help though. It is hard to get up and down and I can’t lift anything.

I must say that being sick and being in pain everyday can wear on a girl’s spirit. I really want to get out of the house but every time I try to venture out I am exhausted by the time I get in the car. I still try to go but that just tires me for the rest of the day. I guess I shouldn’t expect to much but I have always been impatient when it comes to recovery. I want to be well now not 8 weeks from now.

I am starting rehab this week. Cardiac rehab is three days a week of working out for one hour. I do cardio on the machine of my choice for 30 minutes and then nutrition and stretching for the other 30 minutes. I get to go at my own pace and rest as often as I need to. They want my to build up to 30-45 minutes non-stop 3 days a week. My goal is to get back to walking 3 miles a day. I will be doing rehab for 6 months. I think it will be good for me. There is a woman in her late 30’s that just had surgery. I am looking forward to meeting her. It might be nice to talk to someone else that is climbing this hill.

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*…Little did I know that hill became one of the biggest mountains of my life. A few weeks after this was back in the hospital undergoing the worst experience of my life… I had a staph infection in my sternum, but more on that later…

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* After this surgery a lot more has happened and I will share those stories in the weeks to come. Today I am very healthy and very happy. Heart surgery is hell! Plain and simple. But if you take care of yourself and listen to the doctors, walk a lot after ICU, the recovery in the hospital goes by quickly. It feels like molasses, but I was out of the hospital and home in 6 days. And it was not a cake walk. Barbara Walters made it sound like a cake walk when she did her “report” on ABC… but she was full of it!

I don’t want to candy coat this for the people who actually have to have this surgery, because if I did that and I was them I would want to hurt me for lying about it! Heart surgery hurts and it is hard… the worst part is the first three days before you get your chest tubes out… then the rest is so much better. Take your time recovering but don’t be lazy about it. Walk everyday… do your breathing exercises, eat a good diet! Listen to your doctor! AND PRAY!

At the end of the day I would love to say this is all a distant memory… but it isn’t. Some of it is… the really hard stuff is. I have a lot of scars though… I have owned some of them for more than 20 years now. (OMG… Can that be???!!!) Over the years I have learned to love my scars, what they mean and how they make me look. It hasn’t always been that way. They remind me of what I have been through. Along with some of my daily challenges in just being a CHD patient.

If you or someone you know is having heart surgery there are a lot of challenges you will face going into heart surgery and coming out of it… The great thing is, science has come such a long way in heart surgery, mechanical valves,  and LVAD’s, etc.  All of these advancements help us live much longer lives. In my experience, the life you will live after surgery is 100% worth going through the surgery. And if you need encouragement or a person to vent to… I am here. You can email me anytime! Just do it and let your inner rock star have a chance to make an appearance!

Praise God for allowing me to survive all I have… Because I am really so blessed. I am praying for all of you facing your hardest days today…