- 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...
Monday, June 29, 2009
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.
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.
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.
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.
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.
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.
Subscribe to:
Posts (Atom)