Monday, June 29, 2009

After Surgery

- Dictated by Amy

First I want to thank everyone for their thoughts and prayers. These last few days have been the most challenging of my life. With today being the worst.

My first memory after surgery was them attempting to pull out the breathing tube. My hands were tied like a crazy person to the side of the bed. It hurt, thankfully the sedation was helping me to forget that (and the guy who pulled out the tube).

Before I could move to the step-down unit, a very nice nurse named Chris had to pull out the chest tube. Ouch! times five. The tube was about 3/4 inch and she just ripped it right out and I could feel every inch.

I have been in the step-down ICU since Saturday. I am in a corner room with a veiw I cannot turn my head to see. I have been spending my days walking while holding onto a wheelchair and breathing from an oxygen tank. Most walks I only want to make the half-loop around the ICU, but I am encouraged by the nurse to take a full loop. When I am done, I'm thankful for all the squats and lunges I had been doing before surgery because I just can't flop into bed. I have to squat and put my butt on the bed before swinging my legs over. While at the same time, not ripping my chest open.

I started the day of surgery weighing in at 119 lbs., and the next day after the surgery I weighed 129 lbs. gaining 10 pounds of fluid. The nurses monitor how much liquid I produce. They measure this by having me pee into a cup. They call it a "hat".

The worst thing has been managing my pain. I have been on all kinds of narcotics including Percaset and Vicodin. I did have some success with an injectible Delodin (sp?). The nurses are trying to ween me off anything injectible so no Delodin for me today. Today it was Percaset which caused me to have extreme nausea, headaches and delusions.

Eating is very challenging as I have no appetite what so ever. This contributes to my extreme nausea. After a terrible afternoon, I was given Motrin and something else in my IV. I have been ordered (even scolded by my mom in Michigan) to eat even when I do not want to. The idea of eating foods that I previously liked is excruciating.

Right now it is 9pm and I am feeling pretty good. Not so much nuasea. Time to get some sleep...

Friday, June 26, 2009

Surgery

- Posted by Marlo

Today's the day. The alarm goes off at 5am, Amy gets up to shower with the 'special surgical soap' and get dressed. She tells me she was able to get a couple hours of sleep. Quietly we pack up to go. As we drive away, a rainbow greets us at the end of the street (a promising ominen?). Amy comments "how beautiful".

When we check-in with pre-op, Amy is comforted to see the same nurse who had taken care of her previously during her angiogram. She is the nurse who will check her in today. During pre-op, it's a familiar drill - questions about medical history, checking vitals and inserting the IV's. The chaplain comes to pray with us. The anesthesiologist comes in and tells Amy she'll get an IV in her neck and enough drugs to put her asleep and not feel nor remember anything. By 7:30 am, Amy is prepped and ready to go. When the nurse recognizes Amy's anxiety, she asks if Amy wants the "heck, I don't care" drug to calm her nerves. Amy agrees and five minutes later she is visibly more relaxed. She shares with me her affirmation "I am good, I am smart and dog gone it, people like me" (to quote Smiley from SNL).

When the OR nurse comes to get her at 7:55am, my emotions get the best of me. I can't help but start to cry when the nurse wheels her out the door and off to the OR. Jokingly, the anesthesiologist asks if I could use a shot of the "heck, I don't care" drug.

While waiting in the waiting room, the following events take place...

8:35 am - a visit from the OR nurse. Amy's tubing is in and she's stabilized.

9:00 am - a visit from Tom (family friend) and others I know who work in the hospital to extend their thoughts and prayers. Tom ends up staying with me for the rest of the day. His companionship is comforting and I am grateful to have a friend to talk with and to pass the time.

9:40 am - a call from the OR nurse. Great news! Amy's valve can be saved and will not need to be replaced. The surgery to repair her aorta will proceed and take less time than originally thought. Surgery will be done by 11 am meaning less time on by-pass.

10:45 am - OR nurse comes to inform me that surgery is going very well. Amy is off the "pump" and her heart is beating on its own. They will be closing her up soon.

10:50 am - The ICU nurse also comes to visit. She tells me about Amy's move to the ICU and that she will call me around 12:45 pm when it is time to come and see her.

11:45 am - the surgeon comes to visit. Amy's surgery was a success! He saved the valve and her aorta has been repaired. He did not have to cool Amy's body down as was previously anticipated. As a result, her time on by-pass was minimal and the surgery was done in less time than expected.

12:00 pm - calls to family and friends to update on Amy's condition. For the time being, there is a collective sigh of relief.

12:45 pm - a call from ICU to see Amy. It feels great to see her. The nurses say she is doing very well. She responds to me but cannot talk because of the breathing tube in her mouth. She is very sedated and still pretty out of it. The ICU nurse tells me to come back at the bottom of every hour to check on her.

1:45 pm - Amy continues to do well. She is coming out of sedation and is more alert. She opens her eyes when she hears me and then falls back to sleep.

3:30 pm - the breathing tube is removed. As I lean over to give her a kiss, she wispers "I love you". Those three words never sounded so good! And then she goes back to sleep.

4:45 pm - last visit before going home for the night. "This is when the work begins" says the nurse as I prepare to leave. Before long, Amy will need to cough, breath and start dangling (sitting up in bed).

By 5:30 pm, I am home to see the kids and have dinner. It is a blessing my mom is here to take care of everything on the home front. Gabe wants to know where mom is. I tell him she is in the hospital and will be home in a few days. He goes back to playing with his batman helicopter.

Before bed, one more call to the ICU. Amy is doing great. She is "dangling" and drousy. I cannot wait to see her again tommorow. If her recovery continues to go well she will be moving to step-down in the morning.

Thursday, June 25, 2009

Day before surgery

Today I spent the entire morning at the hospital. I had some blood taken, an EKG, and went over my medical history for the millionth time. Marlo and I watched a video about what to expect before, during and after open heart surgery. The old, chubby guy in the video shared his experience with heart surgery and recovery. While I couldn't really relate to the guy, I was able to view what I'm going to experience in less than 24 hours. It made me cry. It's just so unreal that this is happening. We met with the nurse in charge of the ICU department and she talked to me about what will happen those first hours after my surgery. I will go directly to the ICU. I will have a breathing tube down my throat, an IV in my neck, one IV in each arm, a catheter for urine, and 2-3 chest tubes for draining any fluid that may accumulate in my chest in the hours after the surgery. I'll be heavily sedated, unable to speak, but able to hear and move my head or squeeze a hand. My heart and other functions will be continually monitored. I will have wires coming out of my chest so they can attach an external pace maker if needed. Once I'm stable and breathing on my own, they will remove the breathing tube. I hear this isn't very pleasant, but was told that I will not remember it. Marlo will be able to visit me for 5 minutes an hour, but again, I was told I will have no memory of it. The day after my surgery, I may be moved to a step down unit. I will have to sit up, do breathing exercises and walk everyday. Eventually, the chest tubes will be removed. The nurse said that this will hurt, but only for a minute or so. For the next three days, I'll be in this special unit of the hospital specifically for open heart patients. I'll be able to shower and walk everyday, and probably eat relatively normal food while there. My kids may be able to visit after a few days.

I had some periods of anger and "why me?" today. Every patient in ICU was old and looked sick. I'm not old and I don't look sick. I'm extremely happy that the aneurysm was found and can be repaired. I know that if I didn't have the surgery, my aorta would eventually dissect and possibly rupture. Of course, this is a very bad thing. So I'm very very lucky that this was found when it was. It doesn't make the whole experience easy or less scary, though. I wonder how I will get through the first few days in the hopsital. I really have no choice but to get through the next few days, as scary and uncomfortable as they will be.

Sunday, June 21, 2009

Seriously??

Total Circulatory Arrest, or Profound Hypothermia....Two phrases I really didn't want to hear about. In order to perform surgery on the aorta, the heart needs to be stopped and I will need to be on a heart lung machine. This makes sense of course, but I just read that at a certain point when the aorta is opened, the flow of blood also needs to be stopped. In order to safely stop the flow of blood temporarily, the body temperature must be very cold. This is called total circulatory arrest and can safely be done for 40 minutes. I wish I didn't know this. Fricken internet and its wealth of information.

When we met with the surgeon, he did mention "cooling your body down." I didn't ask him to explain further. We did however ask the surgeon if there were questions we should be asking that we weren't asking. He said "risks." We sort of just nervously shrugged off any discussion of risks. I KNOW there are a ton of risks involved in this type of surgery. Heck, I signed the form that said I understand there is a 1 in 100 chance of death during surgery. No, I don't really want to know any thing else. The surgery must be done. No question.

Friday, June 19, 2009

Ascending Aortic Aneurysm

Marlo and I met with the surgeon this morning. I really like him. He is a nice guy, personable and very knowledgable. He explained that I have an ascending aortic aneurysm. While not the first time I heard this term, this was the first time it was attributed to my condition. Dr. Guber showed me diagrams and slides of my actual heart while explaining my condition. The surgery involves the doctor cutting open my chest, sawing my breastbone down the middle, removing the aneurysm and repairing it with a synthetic material. I actually FORGOT to ask what type of material. I have heard that they use GoreTex to repair the aorta. While in surgery, I will be put on a heart-lung machine to "breath" for me and pump blood throughout my body. It is weird that my heart will not be beating for a few hours while the work is being done.

There was some potential good news. Dr. Guber said that my aortic valve actually looks really good and that he might NOT have to replace the valve. This was the most exciting thing I heard today. He said that he will know once he actually can look at the valve if it needs to be replaced. If the valve does look bad, he will remove it and put a mechanical valve in it's place. This will require me to be on blood thinners for the rest of my life. But the positive side is that the valve will not require replacement, granted it doesn't get infected or I get into a major accident. There are some lifestyle adjustments for people on blood thinners. Mostly with diet...he said basically you have to eat a balanced diet. I do eat a balanced diet, so I think I could handle it. Contrary to a lot of the info out there, he said he would allow me one glass of wine a day while on blood thinners. I do enjoy my wine, so this was good. If I'm on blood thinners I cannot do any hard core sports, but I can still work out, run and cardio, pretty much what I was doing before. So much for my extreme skydiving aspirations.

I also have the option of a pig valve or human valve. These valves do not last forever, and need to be replaced 10-20 years down the road. I would not have to be on blood thinners if I opt for a tissue valve. But the knowing that I will definitely face another open heart surgery in 10-15 years is something I do not want.

So if my valve wasn't to blame for the enlarged aorta, then what happened? The doctor thinks I have some connective tissue disorder in my aorta which caused it to stretch. I've never been diagnosed with anything like this. I guess I'll hear more about this down the line.

Dr. Guber said that if I opted to not get this fixed now, I could face a dissected aorta and possible rupture in the near future, probably less than 5 years. He recommended surgery within a month or two.

My surgery is scheduled for Friday, June 26 at 8 a.m.

Meeting the surgeon later this morning

Today is the day I meet my surgeon, Dr. Myles Guber. I feel confidence in him already because he was named Denver's "Top Doc" for Thorasic Surgery. I hear that he's all business, with a bedside manner that's lacking something....we'll see. I'm fine if he doesn't want to hug me or hold my hand, smile reassuringly. I have Marlo for that.

I've decided to meet him looking like the vibrant, healthy woman that I felt like I was a few weeks ago. No sweat pants, messy ponytail or gloom and doom face for me. I'm going to put on some lips and do my hair. I don't want to look like someone with heart disease. I want him to see that I love my life and I want to fight for it and I want him to fight for me. He might not even notice, being "all business," but that's ok. I'll notice. Marlo will notice.

Thursday, June 18, 2009

Outpouring of support

Since the news of my upcoming surgery has been known, we have received so many offers of help and care from our friends and families. We are so grateful for the wonderful relationships we have here in Denver, and for the closeness with our familes in Michigan and in Canada. I know that the next month or so will be a very difficult time for us. We feel truly blessed to have so many wonderful people in our lives.

Ouch!

I had no idea what to really expect after a heart catheterization. Most of the stuff they told me to watch for had to do with bleeding, swelling, etc. I had none of those things. Just pain. It wasn't bad when I first got home, so I tried to do most of the normal things we do at home....get the kids fed, cleaned and put to bed. I then sat at my computer and typed the long blog about my cath. It was just after I finished that blog when I was shocked with a huge pain. I thought for sure I was going to be gushing blood and we were going to have to call 911, as instructed if it bleeds heavily. I called Marlo and he helped me walk to bed. OUCH! The puncture site was very crampy and painful. Thankfully, there was no blood, swelling, hottness, etc. I got in bed and kept my leg very still. The pain went away within 20 minutes or so. I guess I should have got right into bed when I came home.

The night was fine. I slept pretty well. There is some pain and tenderness today. It's not that bad.

What stinks is that Lily woke up with a fever and then threw up all over the living room. She wants to be held at all times. Thankfully, Marlo is home today and Gabe was able to go to school for a few hours.

This whole cath experience made me forget about my impending surgery, for a little while at least.

Wednesday, June 17, 2009

Heart Catheterization Day

June 17. Spent most of the day in the hospital. I checked in at 11 a.m. and was taken to pre-op. I had an IV put in my arm and signed the informed consent form for my procedure. At 1 p.m., the cath lab folks came down to get me. A few nervous tears and words to my husband and I was taken into an extremely cold room. Four large computer monitors were on my left. Plastic covered things were hanging over my head. The nurse cleaned off the groin area on both sides. I was still very nervous and had to remember to not think about my kids while laying on that table. It didn't help when the nurse asked how many kids, names, ages. I got a little weepy again. One of the nurses injected something into my IV to help me relax. Another tech was getting me prepped. Heart sensor stickers were placed on my body. He put a sticky, heavy plastic thing across my groin area and had to adjust it once. It was very sticky and it kinda hurt when he had to adjust it. At one point in this, I touched my right leg with my right hand. They reminded me to not touch my leg as they had just cleaned it. They cleaned it again.

The doctor arrived. I hadn't met him prior to this, so he came over and introduced himself. He seemed pretty nice. He was older, so I felt a bit of comfort in that. I figured he had a ton of these procedures under his belt. He explained what they were going to do.

The doctor said he was going to inject a local pain killer to numb my skin before inserting the catheter. They were planning on using my right side. The shot stung for a few seconds. Then as he inserted the catheter, I felt some pressure, but not really pain. It was a weird sensation. I kept my eyes mostly closed. When I did open them, I just noticed the sterile white room and plastic covered things that moved over and around me. Most of the time I opened my eyes, my view was blocked by these plastic covered things.

At times they injected dye into the catheter. As this occured, a hot sensation moved from my chest down to my groin area. It felt like I peed my pants. The doctor would call out numbers. At times he would tap on my leg. The lights would dim and get bright, dim and get bright. The doctor and the tech would whisper things to eachother. At one point I heard the nurse, who was in another room, say, "her pressure is low." Or something like that.

The weirdest sensation occured near the end of the procedure. The doctor said they were in the left ventricle and that I would feel some extra heartbeats. I could feel my heart beating erratically and I really didn't like that feeling. I needed reassurance a few times that it was a normal feeling. I also had a strange sensation in my right foot. It felt like I was stung by a bee on my right heel. It started as a tickle, but then felt like a burning sting. I mentioned it to the doctor and he said something about a nerve that runs along the artery. It when away quickly, but came back one more time.

I was so thrilled when he said that they were finished. The doctor said that I had "beautiful arteries," but told me what I already knew, my aorta was quite enlarged. He said that he imagined the surgery would take place within a week. I still need to speak to the surgeon.

The nurse and the tech started to tell me about what to look for at the puncture site and how to take care of it. They then prepped me to move me to a regular bed so I could be moved to a room to recover for a few hours. One nurse grabbed the blanket under my right side and sort of rolled me into her. The tech slid a big, cold and hard black board under me. Like a big pizza he sorta slid that thing under me as the nurse rolled me onto it. Then he pulled me over to the bed. He pulled me kinda hard and I flew onto the bed. He mentioned that they usually have heavier patients and said, "I wish they were all as light as you!!" I guess I'll take it as a compliment!!

One of the best things ever....heated hospital blankets! After I was on the regular bed, the nurse covered me with very warm, soft blankets. I was almost shivering before, so those blankets were the best feeling. They tucked my hands under the blankets and wheeled me out. I saw my husband outside the door talking to the doctor. My husband works at the health care system, so he has worked with many of the people we came in contact with.

My recovery was fine. I had to keep my right leg absolutely still for about 2 hours. I could bend and move my left leg, but it was hard to keep my right one still. The nurses checked my vitals every 15 minutes for the first hour and then twice in the second hour. I asked if I could have something to drink. I said I was craving a regular Coke. The nurses aide brought me an ice-cold can of Coke with a straw. So good! I was also excited when they gave me a menu and said I could eat. Since I was laying down, I picked something non-messy. Grilled cheese and fries with chocolote pudding for dessert! Nice healthy meal!!!! Hey, I have beautiful arteries, right? Is one greasy meal going to hurt?!? That was the best grilled cheese ever...thick white bread that must have been soaked in butter with thick American cheese and a side of well done fries. Hard to believe they let me eat that in the cardiac dept. My husband ate most of the fries and then discovered that there was chocolate ice cream for patients in the fridge down the hall. We switched out the pudding for ice cream. Marlo fed me ice cream while we watched Ellen.

Finally we were able to leave. I took my at-home directions and was wheeled to the valet. We picked up the kids at their school. This was the first time ever that they were at school for more than three hours. They were there all day and even napped there. The ladies at the school are being so supportive about everything. I can take the kids any day for any length of time. I don't want to do that too often, but it's nice to know that I can.

Before we left the hospital, the surgeons office called to schedule my meeting with Dr. Guber (pronounced Goober). Dr. Guber is Denver's Top Thorasic Surgeon and everyone I mention his name to says that I'm in the best possible hands. I'm hoping they are right! I meet with him on Friday morning. After that meeting, I will know the date of my surgery.

Tuesday, June 16, 2009

Oh how life has changed since Friday...

On Friday, June 12, my life as I know it changed. I found out that I have to have open heart surgery. I'm 37 years old. Healthy. Non-smoker. Exercise. Low blood pressure. But apparently I was born with a heart defect, a bicuspid aortic valve. This heart defect, over time, appears to have caused my aorta to enlarge to twice the normal size. My cardiologist told me that I have to have surgery SOON to replace the valve and repair the enlarged aorta. Here's a picture of both sides of my enlarged aorta.


A little background...
A few years ago, my OB-GYN referred me to a cardiologist because she heard a heart murmur. My husband and I were planning another child, so she wanted everything checked out before I got pregnant. I had been told at one point in my life that I had mitral valve prolapse. No biggie. I went to the appointment and the cardiologist, Dr. Collins (Denver's own "Cooking Cardiologist") confirmed that I did have mitral valve prolapse, but said he heard a "leaky valve" and wanted me to get an echo. I scheduled the echo, but later cancelled the appointment, as I found out I was pregnant with Lily. Fast forward to now....I have been working out alot. Cardio, weights, etc. Several weeks ago I was on the eliptical when I felt dizzy, hot and my heart fluttered. I decided that I should probably follow up with the cardiologist, even though it had been two years. Dr. Collins again said that I had mitral valve prolapse, but ordered a stress echo, because of my symptoms while working out.

In the past few months, I ignored the minor chest pressure and sometimes mild pain I would feel at random times. I wrote it off to a condition from working out, pulling a muscle, being tired, stressed with my kids, heartburn, etc. I figured the stress echo would be a waste of time and they would tell me that what I felt on the elliptical that day was just a normal thing.

I went to the stress echo feeling confident that all would be ok. I did great on the treadmill, even as they cranked up the speed and incline. Yes, I was huffing and pufffing and sweating. I remember making a mental note to do this type of workout the next time I was at the gym.

After the stress echo, I went back to my normal life. Working out, Body Pump, playing with the kids, getting stressed out at the kids, etc. On the Monday after the echo, Dr. Collins called to tell me that the echo was normal, but they found that I had an enlarged aorta and I had to have a cat scan.

So between Monday and Friday, when my cat scan was scheduled, I freaked myself into believing that I was going to drop dead from a ruptured aorta. Too much information on the Internet. Scary scary information.

Finally on Friday, June 12, I went back to South Denver Cardiology to have my CT scan. I was terrified, but felt hopeful. The scan itself isn't that scary. Basically I laid on a table and the tech put an IV in my arm, at the inside bend of the elbow. She inserted a catheter into my arm at this spot. She placed my arms above my head. The table did move back and forth, but I wasn't moving into a large tube. It moved under a large ring, rather than a tube. Occasionally, a booming computerized male voice would say "Breath" or "Stop Breathing". And twice, dye was injected into the catheter. As the dye was injected, I felt a warming sensation sweep over my body. The tech warned me that some patients say that they feel like they are peeing their pants. I did feel this sensation after the die was injected. The entire scan was probably less than 10 minutes.

After the cat scan, which I read somewhere equals the radiation of 200 chest xrays, the tech said that I would hear something on Wednesday. I figured since she had seen my pictures, she knew I was fine. If I was about to die of a ruptured aorta, she probably wouldn't have told me that the doctor would call on Wednesday, a whole 5 days later. Because I was starving from not eating since the previous evening, I headed to Subway. I was halfway into my turkey sub when Dr. Collins called my cell to tell me that indeed I do have a VERY enlarged aorta. I needed to have a regular echo right way. He also said that I'm likely going to need surgery SOON to repair everything.

I called my husband and tried to tell him what was going on, but I was sobbing hysterically. I figured right there that I was going to drop dead. I was thinking about John Ritter, who died after his aorta ruptured. Then I started thinking about having my chest sawed in half, being on a heart/lung machine, recovery, etc. Everything scary I could think about. I started to drive home and I was a few miles into C-470 when Dr. Collins called back. He said that he forgot to tell me to practice safe sex! Really, he called me back to tell me that it was safe for me to have sex, but to use a condom. It would be really bad for me to get pregnant at this time. I told him we were done having kids and that I wasn't about to have sex or do anything that would raise my heartrate. He said that I could come back now to have my echo, and that he would meet with me after.

I went back to the office where I was met at the door by Dr. Collins assistant, Amy. I was still weepy and scared and she took me right back to the echo tech. I saw my CT tech and she sat with me for a bit and brought out a stuffed "Beaker" doll from the Muppets. She said it was her "Dr. Collins" doll. It actually did look like my doctor, so I laughed.

Finally, a very nice woman named Robin came out to take me back to get the echo. Robin was awesome and told me everything she was doing, showed me my heart and the valves. This is the very first time I heard the term "bicuspid aortic valve." She showed me on the screen my aortic valve. Even my untrained eye could see that it had two spokes, not three. She also showed me the aorta as she measured it....5.2 centimeters. Very large. She told me a few stories about youngish people having to have valve replacements and aorta repair who are currently doing fine.

After my echo, I was taken to the office to meet with Dr. Collins. Molly, Dr. Collins' assistant came in to take my blood pressure and said, "You're too young for all of this." I couldn't agree more! Dr. Collins came in and Marlo conferenced into the call. Dr. Collins explained that I didn't have mitral valve prolapse, I had a bicuspid aortic valve. This birth defect may be to blame for the enlarged aorta. He said that because I have a small frame, to have a 5.2 cm aorta was just too dangerous. He said I would need a valve replacement and a an aorta repair surgery. I had to have a heart catheterization as a prep for the surgery. They have to make sure my arteries are in good shape. He also prescribed me beta blockers to keep my blood pressure low. I already have very low blood pressure, so he gave me the lowest dosage.

So there it was...open heart surgery. Just a few days before, I was doing chest presses and Body Pump, planning our summer road trip to Michigan and Canada. Now, I am ordered to take it easy until my surgery. Now, my life will never be the same. Instead deciding things like what to wear to my high school reunion, I have to decide what type of aortic valve I want.

I try not to think of the worst case scenario. Dying. Dying before I make it to surgery. Dying during surgery. Dying after surgery from infection. I try not to think about my little kids, Gabe 3 and Lily 19 months. If I die, they will never know me. They are too young to have any memories of me. I start to freak out that I should have been better about videotaping and cataloging photos, keeping journals of milestones, etc. Should I write them each a "final" letter? Part of me is happy that they are so young that they don't really understand the seriousness of what's happening. But then I get incredibly depressed to think about the fact that if I do die, they will grow up saying things like, "My mom died when I was a baby...I don't remember her."

I believe that the mind and faith is so powerful in situations like this. I HAVE to believe that all will be ok. I'll slowly recover, and we'll go back to making plans for the summer, and future summers. I am still scared, but I have to find a way to make myself believe that I will survive. I have to have faith in the doctors and nurses who will care for me. I have to have faith that I will survive. I have to survive for my kids and my husband and my family.