I've been feeling lazy lately. It's been a few weeks since my last post. I don't really know what to write about. Physically, things are going well. I'm sleeping on my side without pain, I can pick up and hold my daughter, I am starting to exercise. Except for the itchy, long red scar on my chest, I feel pretty much like my old self.
Last week, I started cardiac rehab. I'm really motivated about it. Basically, I get to work out while hooked up to a heart monitor. It's the best way to ease back into that part of my old life. We're taking it slow, but I feel almost ready to resume normal workout activities. The doc and the rehab techs think I'll need 12 sessions before I can start going to the gym on my own. I'm working out three times a week for one hour. Last week, I worked out on the treadmill and then did some really easy weight lifting. Really easy!! I wear four sticky heart monitors connected to a box. The box goes into a purple fanny pack that I wear while I work out. My blood pressure is checked a few times and I'm asked frequently to rate my level of exertion. On my first day, I met a woman who was about my age. She was starting rehab that day as well. I didn't get a chance to get her story, yet, but I will. But mostly the people in rehab are much older. I have made friends with an elderly lady named Joan. She recently had quadruple bypass and had the same surgeon as I, Dr. Guber.
I met with Dr. Guber last week for a check-up. Normally, I would have only met with him that one time, about 3 weeks after surgery. But since I was readmitted to the hospital a few weeks ago, he wanted to see me again. My time with him lasted about two minutes! He asked how I was feeling, listened to my heart and then looked at my incision. I asked about the bump next to my incision, about one inch from the bottom. I was told by the nurse practitioner that it was the twisted wire that holds my breastbone together. She said that the wire would need to be cut out in an out-patient procedure. I was relieved when Dr. Guber said that it was actually a plastic-type stitch that will eventually dissolve in three or four months. But it's really stretching and pushing on the skin, causing the skin/bump to look white. Dr. Guber said that if it pokes through the skin, to come in and he will remove it. Really? I hope it doesn't poke through the skin!! It looks like it could, though. The skin is sensitive around the bump and I really only have one comfortable bra that doesn't irritate it.
I'm going to Vegas in about a week and a half with my two sisters. This trip was planned well before I knew of any heart issues. We planned to go to Vegas to relax by the pool, have many cocktails, gamble a bit and just check out the scene. The trip is in honor of Kate's upcoming wedding. Sort of a bachelorette party, but with just the three of us and probably no strippers! Soooo, I'm really rethinking the idea of wearing a bathing suit and lounging by the pool. First, my incision is pretty dark red right now and makeup does not do anything to cover it....and then I have the bump. And below my incision is the chest tube incision. That's an ugly one. Half moon shaped, deep, dark red. I also have an old appendectomy scar on my belly from way back in 9th grade. That's an ugly one, too. I tried on my bikini and I really look carved and beaten up. I'm not feeling very confident. On a few occasions recently when I have worn v-necks and the scar is visible, I have noticed a few curious stares and glances. Maybe I will go buy a new one-piece swimsuit. I know the redness of the scar will go away eventually. (Hopefully before Kate's wedding in October!!)
I know I'll get some grief for saying this, but I'm really ready for summer to be over. It's been kind of a bust this year. Well, more than "kind of." I'm just ready for a change. Call me crazy, but I'm sick of the heat and sunscreen and shorts and tank tops and flip flops and trying to keep my feet nice looking. I want to cover up under a big comfy sweater with a pair of well-worn jeans.
Saturday, August 8, 2009
Tuesday, July 21, 2009
A little setback
I spent the last two nights in the hospital. On Sunday, I had flu-like symptoms all day. Major body aches and pains, intense headache, chills, no appetite. The usual stuff that comes with the flu. Finally at about 7 p.m. I decided to take my temperature. I was shocked that the thermometer read 101.7. My post-op instructions said that if I had a fever nearing 101, I was to call the on-call doctor right away. So I called. I didn't get Dr. Guber, he wasn't on call. I ended up talking to another doc, Dr. Kessler. Nice guy. But he wasn't too sure on the plan of action. My level of confidence in him diminished a bit as he said "I don't know" about 10 times. Finally he said that it was probably the flu, but the safest thing would be to have me check back into the hospital. They would need to run blood cultures to make sure I didn't have a bacterial infection in my body, especially on my new aortic graft.
Because it was bedtime and the kids were a little, uh, crazy, I decided to ask my friend, Chris, to take me to the hospital. Marlo really needed to get the kids to bed. Chris drove me to the hospital and stayed with me while I had my IV put in, blood drawn and monitors put on. She's a great friend. (She even came by on Monday to visit and bring me shampoo, People magazine and a Starbucks. Now that's a good friend!!) The nurse laughed at us when we asked if I would be able to go home that night. No such luck.
I spent the night dealing with a massive headache and sweating profusely. Hospital beds really aren't that "breathable." The mattress is vinyl and even though it's covered with a cotton sheet and a pad, you are going to sweat. And even more so if you are laying in that bed with a high fever. So I'd wake up in the middle of the night with damp sheets, gown, hair, and pillow. It was gross. My sheets were changed each morning, but still, it was gross. And because you are damp, everytime you get out of bed, or adjust yourself, or the air hits you, you get cold. I rotated between freezing and frying for two days. Thank goodness I was able to shower that first morning.
On Monday morning, Dr. Guber and his nurse practitioner, Sara, came by to see me. Dr. Guber explained that they needed to wait several hours for the preliminary blood culture results to show up. He figured I would be able to go home that afternoon, if the results were negative. He did tell me that my regular blood test showed that I had low white blood cells and he said I probably just caught a bug. But, they aren't going to risk anything since I was only 3 weeks post-op. Plus, they were concered about the now migraine-like headache I had. My headache was only on the left side of my head, around the temple, eyebrow and forehead and above my ear. Occasionally, I'd get a pulse of shooting pain. I had been given a combo of 600 mg Motrin and two Tylenols to take care of the headache. That drug combo seemed to take the edge off the headache. At about 3 p.m. on Monday, a good 4 hours since I had taken anything for the headache, Sara came in to tell me that they weren't going to give me anything for the headache because the Motrin and Tylenol mask a fever. They needed to see if I spiked a fever again, so I had to suffer for most of the day with a splitting headache, sweating like a pig with no appetite at all. Sara also mentioned that the blood cultures would take a good 24 hours until there were any results. It looked like I was in for another night at the hospital. My temperature stayed between 98 and 99 during the day and finally at 8 p.m., Dorothy, the nice nurse, gave me drugs. I loved Dorothy. About an hour later, my headache wasn't so intense.
This morning, I got word that my preliminary blood cultures were negative. Good news. I could go home. I still have a bit of a headache on the left side, with occasional, quick shooting pains. In a day or two, I will get the final results of the other blood cultures. I'm pretty sure they will be negative. At least I hope so.
I never want to go back to the hospital. It's such a bad place to be. Yes the nurses are nice, but it's still not a place I ever want to spend any more time. Marlo works with hospital people everyday. And he really loves his job. But he saw a different perspective in the last few weeks. It's really not a good place to be as a patient. It's quite depressing to be a patient. Of course, I am only speaking for myself, my experience.
Yesterday, I found out something interesting about my incision. I recently noticed a bump under the skin, right next to the incision about one inch from the bottom. The bump feels like a little bone fragment or something. It is kind of smooth and round and definitely noticable on my chest. Sara took a look and with total confidence told me that the bump is a WIRE used to hold together my breastbone. Apparently when they wire my bone back together they end up twisting the wires together, like a twist-tie, and then tuck the ends down. She said my bump was the part where it was twisted. She said that since I don't have any fat or "extra padding" in that part of my body, the wire will be noticable. Hmm, nobody ever told me this!! She also said that they could eventually take out that part of the wire, but I'd have to go in for outpatient surgery and be knocked out so they could cut it out. I'm not sure taking it out is worth surgery again. I guess I'll wait and see how it looks. I really don't want to ever go back to the hospital.
Right now I'm still feeling a little sick. I have remnants of the headache and occasional shooting pain on the left side. And I have a new kind of chest pain today. Of course the pain happened after I left the hospital. I feel like my incision is raised a bit on the top. It's extra tender there. And then, for the first time since my surgery, I have a pain inside my chest. Not bone or skin related. But it sort of comes and goes. If I still have it tomorrow, I'll call Sara and ask what she thinks. I hope she doesn't recommend me coming in. Did I mention that I NEVER want to go back to the hospital!?!?
It was great to see my kids today. When I picked them up from school, they both ran up to me and hugged me. But I feel a bit disconnected from them. I can't pick them up or run around and be goofy with them. And this might sound weird, but they look like they grew up in the two days I was in the hospital. I'm feeling like I am missing out on their lives right now. I can't fully parent the way I want to because of my physical limitations. And I get tired more often and need to rest. So I'm not fun-mom anymore. I guess I need to remind myself that they are still little and will probably not remember this sad summer. I'm already planning on how I will make it up to them in the future. Fun trips, movies, treats, etc.
I'm hoping for a comfortable, sweat-free sleep tonight.
Because it was bedtime and the kids were a little, uh, crazy, I decided to ask my friend, Chris, to take me to the hospital. Marlo really needed to get the kids to bed. Chris drove me to the hospital and stayed with me while I had my IV put in, blood drawn and monitors put on. She's a great friend. (She even came by on Monday to visit and bring me shampoo, People magazine and a Starbucks. Now that's a good friend!!) The nurse laughed at us when we asked if I would be able to go home that night. No such luck.
I spent the night dealing with a massive headache and sweating profusely. Hospital beds really aren't that "breathable." The mattress is vinyl and even though it's covered with a cotton sheet and a pad, you are going to sweat. And even more so if you are laying in that bed with a high fever. So I'd wake up in the middle of the night with damp sheets, gown, hair, and pillow. It was gross. My sheets were changed each morning, but still, it was gross. And because you are damp, everytime you get out of bed, or adjust yourself, or the air hits you, you get cold. I rotated between freezing and frying for two days. Thank goodness I was able to shower that first morning.
On Monday morning, Dr. Guber and his nurse practitioner, Sara, came by to see me. Dr. Guber explained that they needed to wait several hours for the preliminary blood culture results to show up. He figured I would be able to go home that afternoon, if the results were negative. He did tell me that my regular blood test showed that I had low white blood cells and he said I probably just caught a bug. But, they aren't going to risk anything since I was only 3 weeks post-op. Plus, they were concered about the now migraine-like headache I had. My headache was only on the left side of my head, around the temple, eyebrow and forehead and above my ear. Occasionally, I'd get a pulse of shooting pain. I had been given a combo of 600 mg Motrin and two Tylenols to take care of the headache. That drug combo seemed to take the edge off the headache. At about 3 p.m. on Monday, a good 4 hours since I had taken anything for the headache, Sara came in to tell me that they weren't going to give me anything for the headache because the Motrin and Tylenol mask a fever. They needed to see if I spiked a fever again, so I had to suffer for most of the day with a splitting headache, sweating like a pig with no appetite at all. Sara also mentioned that the blood cultures would take a good 24 hours until there were any results. It looked like I was in for another night at the hospital. My temperature stayed between 98 and 99 during the day and finally at 8 p.m., Dorothy, the nice nurse, gave me drugs. I loved Dorothy. About an hour later, my headache wasn't so intense.
This morning, I got word that my preliminary blood cultures were negative. Good news. I could go home. I still have a bit of a headache on the left side, with occasional, quick shooting pains. In a day or two, I will get the final results of the other blood cultures. I'm pretty sure they will be negative. At least I hope so.
I never want to go back to the hospital. It's such a bad place to be. Yes the nurses are nice, but it's still not a place I ever want to spend any more time. Marlo works with hospital people everyday. And he really loves his job. But he saw a different perspective in the last few weeks. It's really not a good place to be as a patient. It's quite depressing to be a patient. Of course, I am only speaking for myself, my experience.
Yesterday, I found out something interesting about my incision. I recently noticed a bump under the skin, right next to the incision about one inch from the bottom. The bump feels like a little bone fragment or something. It is kind of smooth and round and definitely noticable on my chest. Sara took a look and with total confidence told me that the bump is a WIRE used to hold together my breastbone. Apparently when they wire my bone back together they end up twisting the wires together, like a twist-tie, and then tuck the ends down. She said my bump was the part where it was twisted. She said that since I don't have any fat or "extra padding" in that part of my body, the wire will be noticable. Hmm, nobody ever told me this!! She also said that they could eventually take out that part of the wire, but I'd have to go in for outpatient surgery and be knocked out so they could cut it out. I'm not sure taking it out is worth surgery again. I guess I'll wait and see how it looks. I really don't want to ever go back to the hospital.
Right now I'm still feeling a little sick. I have remnants of the headache and occasional shooting pain on the left side. And I have a new kind of chest pain today. Of course the pain happened after I left the hospital. I feel like my incision is raised a bit on the top. It's extra tender there. And then, for the first time since my surgery, I have a pain inside my chest. Not bone or skin related. But it sort of comes and goes. If I still have it tomorrow, I'll call Sara and ask what she thinks. I hope she doesn't recommend me coming in. Did I mention that I NEVER want to go back to the hospital!?!?
It was great to see my kids today. When I picked them up from school, they both ran up to me and hugged me. But I feel a bit disconnected from them. I can't pick them up or run around and be goofy with them. And this might sound weird, but they look like they grew up in the two days I was in the hospital. I'm feeling like I am missing out on their lives right now. I can't fully parent the way I want to because of my physical limitations. And I get tired more often and need to rest. So I'm not fun-mom anymore. I guess I need to remind myself that they are still little and will probably not remember this sad summer. I'm already planning on how I will make it up to them in the future. Fun trips, movies, treats, etc.
I'm hoping for a comfortable, sweat-free sleep tonight.
Thursday, July 16, 2009
Family, follow-up and photos
I dropped my mom and sister off at the airport this afternoon. They had been here a week, taking care of the kids and I. I really don't know what we would have done without them. Now, it's back to reality. No more "Can I get you anything?" or "No, you sit and relax, I'll change that poopy diaper." It's just Marlo and I. I'm so grateful that he is a hands-on dad. He is so wonderful making sure I get some rest, bathing the kids, cooking dinner, etc.
This last week with my mom and sister was fun. We did lots of shopping, eating at restaurants, and just hanging out watching movies. I'm gaining more strength everyday and I'm able to walk longer without needing a rest. My appetite is back and making up for lost time. I take regular old Motrin for pain. I still can't pick up my kids, which is so frustrating to all of us.
Today I met with my surgeon, Dr. Guber, for my first and last post-op check up. He was very impressed with my progress but mostly impressed with his beautiful work. The incision is healing very nicely and almost seems to disappear in spots. I really don't think I'll have a noticable scar. My blood pressure and oxygen levels are "beautiful" and all systems are functioning as they should. I was told to drop to one beta blocker a day and I can skip the one asprin daily as well. I was told again that I may have to have my bicuspid aortic valve replaced one day. Maybe 10 years from now, maybe 25 years or maybe never. There is really no way to know. I'll just get my yearly echos and hope for the best. Dr. Guber said that while the graft on my aorta is permanent, I do need to protect it from infection by taking antibiotics anytime I have dental work or if I go in for any other medical procedure. He asked that I wait three months before having any major dental work. I can start working out again by walking on a treadmill or taking a slow and easy bike ride, but no ass-kicking intervals or weight training for at least another month or two. It takes at least three months for the breast bone to heal. I'm just worried about my lack of activity combined with my new hearty appetite. It's been hard for me to go from being very active to nonactive.
Before my surgery, I asked my husband to take some pictures of me in the hospital. I wanted to see what I looked like right after surgery. I never once looked in a mirror during my 5-day hospital stay. I just looked at the photos for the first time a few days ago. They are pretty dramatic, especially the one where I'm unconcious with a breathing tube coming out of my mouth. I don't look pretty, but I wanted to capture this part of my life in a few photos. The following photos are in chronologial order from a few hours after my surgery to a few days ago, when Marlo and I had a date night. I love this new family photo. Gabe cracks me up, staring down and hating the camera. Lily with her perma-binky and red Crocs. Marlo with his arm around me. I'm so happy the surgery is over. I'm alive. I get to be with my family. Loving life.
This last week with my mom and sister was fun. We did lots of shopping, eating at restaurants, and just hanging out watching movies. I'm gaining more strength everyday and I'm able to walk longer without needing a rest. My appetite is back and making up for lost time. I take regular old Motrin for pain. I still can't pick up my kids, which is so frustrating to all of us.
Today I met with my surgeon, Dr. Guber, for my first and last post-op check up. He was very impressed with my progress but mostly impressed with his beautiful work. The incision is healing very nicely and almost seems to disappear in spots. I really don't think I'll have a noticable scar. My blood pressure and oxygen levels are "beautiful" and all systems are functioning as they should. I was told to drop to one beta blocker a day and I can skip the one asprin daily as well. I was told again that I may have to have my bicuspid aortic valve replaced one day. Maybe 10 years from now, maybe 25 years or maybe never. There is really no way to know. I'll just get my yearly echos and hope for the best. Dr. Guber said that while the graft on my aorta is permanent, I do need to protect it from infection by taking antibiotics anytime I have dental work or if I go in for any other medical procedure. He asked that I wait three months before having any major dental work. I can start working out again by walking on a treadmill or taking a slow and easy bike ride, but no ass-kicking intervals or weight training for at least another month or two. It takes at least three months for the breast bone to heal. I'm just worried about my lack of activity combined with my new hearty appetite. It's been hard for me to go from being very active to nonactive.
Before my surgery, I asked my husband to take some pictures of me in the hospital. I wanted to see what I looked like right after surgery. I never once looked in a mirror during my 5-day hospital stay. I just looked at the photos for the first time a few days ago. They are pretty dramatic, especially the one where I'm unconcious with a breathing tube coming out of my mouth. I don't look pretty, but I wanted to capture this part of my life in a few photos. The following photos are in chronologial order from a few hours after my surgery to a few days ago, when Marlo and I had a date night. I love this new family photo. Gabe cracks me up, staring down and hating the camera. Lily with her perma-binky and red Crocs. Marlo with his arm around me. I'm so happy the surgery is over. I'm alive. I get to be with my family. Loving life.
Tuesday, July 7, 2009
Did I really say that???
I just re-read Marlo's post about the day of my surgery. I'm cracking up thinking that I quoted Stuart Smalley from Saturday Night Live. Seriously, I haven't seen that, thought about that or said that "affirmation" in a LONG time! That was so random...must have been the "heck, I don't care" drugs talking. Right before I left the hospital, one of the OR nurses came by to see me. I remember her talking to me right before they knocked me out. She reminded me that we were talking about Mexico and visualizing sitting on the beach with a pina colada in one hand and a margarita in the other. Now that's more like me. Marlo mentioned the rainbow in his post. I do remember the rainbow. As we backed out of our driveway to head to the hospital, we saw a wide-band rainbow stretching over the mountains as the sun came up. It was magical and gave me a sense of calm.
I felt pretty good today. I just realized that I haven't really seen my incision all day because I am wearing a crew neck t-shirt. I almost forgot it was there. I'm normally a v-neck gal, but I'm thinking the crew neck might be the way to go, especially on days when I wake up feeling a little blue.
Today I had lunch on an outside patio with my friend, Chris. It was sort of surreal. Really, was I sitting there? I had open-heart surgery less than 2 weeks ago. Nobody knew except Chris and I. It was like our secret. Life is going on "normal" for everyone. I ordered a frozen swirl margarita and sipped it throughout the entire 2-hour meal. A week ago, I was probably at my lowest point ever, dealing with extreme nausea and pain. But there I was, eating Mexican food and sipping a margarita.
Life is so good.
I felt pretty good today. I just realized that I haven't really seen my incision all day because I am wearing a crew neck t-shirt. I almost forgot it was there. I'm normally a v-neck gal, but I'm thinking the crew neck might be the way to go, especially on days when I wake up feeling a little blue.
Today I had lunch on an outside patio with my friend, Chris. It was sort of surreal. Really, was I sitting there? I had open-heart surgery less than 2 weeks ago. Nobody knew except Chris and I. It was like our secret. Life is going on "normal" for everyone. I ordered a frozen swirl margarita and sipped it throughout the entire 2-hour meal. A week ago, I was probably at my lowest point ever, dealing with extreme nausea and pain. But there I was, eating Mexican food and sipping a margarita.
Life is so good.
Monday, July 6, 2009
Getting better, bored and ready to blow?
I'm really feeling better these days. On Friday night, we drove a block up the hill and parked to watch the fireworks in Glendale. Glendale is a tiny 6 block city in the middle of Denver, best known for strip clubs and Super Target. I was feeling pretty good, although I was freezing and shivering in the unusually cold July evening. The kids seemed to really like the fireworks and Gabe fell asleep in grandma's arms before the big finale. We could see our driveway from our vantage point and it was funny that we drove the tiny distance rather than walking. But I wouldn't have made it up the hill! The next morning, we loaded up the van and went to a friend's house for a Fourth of July morning neighborhood kids-on-bikes parade and pancake breakfast. I walked a very large square block, following very far behind Gabe on his festively-decorated bike. I know several people in this neighborhood, so I got a lot of "OH MY GOSH...I DIDN'T EXPECT TO SEE YOU! YOU LOOK GREAT!" I had a nice time, although the long walk really knocked me out for a while. Jelly legs.
We had friends over for dinner than night. My friend, Bonnie, played with Gabe and Lily all night and catered to them during dinner. She's such a great friend. I ate too many chips and salty foods, so that evening, my belly was hard and very bloated. My left ankle was swollen for what I believe was the first time ever. It got a little scary when I felt that I couldn't get in a full breath because my belly was so "full". I decided that I didn't want to lie in bed in the quiet house thinking about it, so I stayed up late watching TV. In the morning I found that I had gained 3 pounds since the previous morning. Technically, I was supposed to call the doctor to report the swelling/bloating, but I didn't. I knew it was from eating too much salt the night before. Lots of water during the day on the 5th and I felt better by the end of the day. My weight was down to almost normal this morning.
Sunday night, we had dinner with friends from church at their house. We left Lily home with grandma, so we all had a relaxing evening...well, not grandma. Gabe had a fun and carefree time running around with his little buddies and Marlo and I enjoyed dinner and conversation with our friends. It was a very nice time, but I felt like at times, I was talking nonsense. I would lose my train of thought or forget the point of things I was saying. I've read that some patients who have been on a heart bypass machine during surgery have trouble concentrating, remembering things and sometimes speaking clearly in the weeks following surgery. Since I hadn't had a drop to drink, I'm blaming the pump. I've called Marlo "Gabe" and Gabe "Marlo" many times in the past few days. I read that this goes away in a month or so.
My big complaint right now is my numb and kind of painful left thigh. I was attached to the heart/lung pump by an artery in my left groin area, through an incision. Apparently there are a ton of nerves in the area that may be inflamed and the numbness will subside in a month or two.
I'm feeling stir crazy being at home all the time, unable to drive or really walk anywhere far. My mother-in-law, Anne, spent the day cleaning our house, washing floors and doing laundry, while I sat and organized some stuff around my desk. Both kids are in summer school from 9-3 everyday, so the house is painfully quiet. I have a lunch date tomorrow and possibly on Wednesday. My mom and sister, Jen, arrive Thursday morning and Anne leaves for Winnipeg on Friday. I'm really looking forward to seeing my mom and sister. It's been a year.
Marlo is very business-like at times, getting schedules set and planning for the next day. The house is running like a machine now. Fun times. I miss a bit of the chaos of not having EVERYTHING planned. Kids with no school or playdates, me trying to keep them happy and engaged, trying to figure out what's for dinner, Marlo and I watching funny shows on TV while drinking wine after the kids go to bed.
But I am feeling better and healing and I know that "good times" are coming again. Not like these are super bad times. I just miss our normal.
We had friends over for dinner than night. My friend, Bonnie, played with Gabe and Lily all night and catered to them during dinner. She's such a great friend. I ate too many chips and salty foods, so that evening, my belly was hard and very bloated. My left ankle was swollen for what I believe was the first time ever. It got a little scary when I felt that I couldn't get in a full breath because my belly was so "full". I decided that I didn't want to lie in bed in the quiet house thinking about it, so I stayed up late watching TV. In the morning I found that I had gained 3 pounds since the previous morning. Technically, I was supposed to call the doctor to report the swelling/bloating, but I didn't. I knew it was from eating too much salt the night before. Lots of water during the day on the 5th and I felt better by the end of the day. My weight was down to almost normal this morning.
Sunday night, we had dinner with friends from church at their house. We left Lily home with grandma, so we all had a relaxing evening...well, not grandma. Gabe had a fun and carefree time running around with his little buddies and Marlo and I enjoyed dinner and conversation with our friends. It was a very nice time, but I felt like at times, I was talking nonsense. I would lose my train of thought or forget the point of things I was saying. I've read that some patients who have been on a heart bypass machine during surgery have trouble concentrating, remembering things and sometimes speaking clearly in the weeks following surgery. Since I hadn't had a drop to drink, I'm blaming the pump. I've called Marlo "Gabe" and Gabe "Marlo" many times in the past few days. I read that this goes away in a month or so.
My big complaint right now is my numb and kind of painful left thigh. I was attached to the heart/lung pump by an artery in my left groin area, through an incision. Apparently there are a ton of nerves in the area that may be inflamed and the numbness will subside in a month or two.
I'm feeling stir crazy being at home all the time, unable to drive or really walk anywhere far. My mother-in-law, Anne, spent the day cleaning our house, washing floors and doing laundry, while I sat and organized some stuff around my desk. Both kids are in summer school from 9-3 everyday, so the house is painfully quiet. I have a lunch date tomorrow and possibly on Wednesday. My mom and sister, Jen, arrive Thursday morning and Anne leaves for Winnipeg on Friday. I'm really looking forward to seeing my mom and sister. It's been a year.
Marlo is very business-like at times, getting schedules set and planning for the next day. The house is running like a machine now. Fun times. I miss a bit of the chaos of not having EVERYTHING planned. Kids with no school or playdates, me trying to keep them happy and engaged, trying to figure out what's for dinner, Marlo and I watching funny shows on TV while drinking wine after the kids go to bed.
But I am feeling better and healing and I know that "good times" are coming again. Not like these are super bad times. I just miss our normal.
Friday, July 3, 2009
Feeling frustrated today
Good days and bad days. I know, I know. But I'm feeling frustrated. I'm sooo not a good patient. Or maybe to some, I'm a great patient. I'm very BAD at asking for help or for someone to do something. I'm also very bad at sitting around. I'm so bored during the day just hanging out and doing very little. It's making me irritable and irritating to others. I'm frustrated that I have difficulty asking for things. I'm frustrated that people around me cannot read my mind. I'm frustrated that I cannot pick up my kids, play with them in the backyard, lift my daughter into her crib, high chair or changing table. I'm very frustrated that plans for a summer visiting friends and family are now shot to heck. I'm tired because I can't get comfortable in bed and I'm frustrated that the giant, poofy recliner that Marlo rented for me to sleep in is actually more uncomfortable than the bed. I feel like an invalid when I can't slide open the heavy patio door or lift a full gallon of milk without feeling like my chest is going to split open. I feel cranky when looking at the dark lines of sticky residue from the miles of tape that covered things on my body.
Everything I've read about open heart surgery recovery and everything people tell me says that I'll have good days and bad days. Physically, mentally, intellectually, spiritually, all that. I know. I know we all need to settle into some type of routine here at home and that I need to get over it and just ask for help when I need it. At the hopsital, the nurses told me to measure progress by week, not day. It's been one week since my surgery. Physically, I'm feeling a million times better today than I did last week at this time. I know that at the end of this week, I'll feel better.
Everything I've read about open heart surgery recovery and everything people tell me says that I'll have good days and bad days. Physically, mentally, intellectually, spiritually, all that. I know. I know we all need to settle into some type of routine here at home and that I need to get over it and just ask for help when I need it. At the hopsital, the nurses told me to measure progress by week, not day. It's been one week since my surgery. Physically, I'm feeling a million times better today than I did last week at this time. I know that at the end of this week, I'll feel better.
Wednesday, July 1, 2009
Back home and so happy to be ALIVE
My nurse, Summer, rips the tape off the last of my three IVs. Hurts like hell, but I'm so ready. She pulls out the IV and then puts more tape on it. She gives me my last hospital pain med, a potent combo of acetaminophen and ibuprophen. I get dressed in the mint-green pinstripe granny-pj top that buttons down the front and a soft black knit skirt. My 6-inch vertical incision is clearly visible out of the top of my shirt. Marlo actually says, "You're wearing that??" One look and he shuts up. Right now I only wanted to feel the sun and be outside and on the road home. Summer the Nurse helps me in the wheelchair and away we go. Wheeling through the hopsital after surviving open-heart surgery, I feel incredibly happy to be on "this side". The life side. As I'm wheeled passed my fellow ICUers and I'm so happy that I'm on this side, not that side. I see families in waiting rooms, awaiting word on their loved ones. I feel the tears well up thinking about Marlo in there, just five days ago, waiting for news. I think of my family and friends, anxiously waiting in Michigan, Canada, Colorado and other places. I'm so happy that WE, the Derksen and Allor families, are all on this side. My surgery is over. I have survived. I'm going home.
Home at last. My mother-in-law, Anne, is staying with us for another week or so. She greets me with a warm smile and asks if I need anything. I sit on the couch, feeling tired, sore and a bit nauseated. I get up, walk to my bedroom and for the first time in five days, I see myself.
I haven't looked in the mirror for five days. Seriously, five days of not seeing myself. I never thought about it before, but that's kinda weird. We see ourselves every day, many times. Head to toe, here is what I look like right now.
My eyes look sunken into my face a bit and I have very dark circles under them. My brown hair looks very witch-like, dry, frizzy and sort of wild looking. I'm already thinking about how I want to get it cut and colored. I have a scab and bruise on my neck where one of the IV catheters was placed. About one inch below my collar bone is the top of my incision. It is exposed, thin and red in places. There are no visible stitches. The inscision is covered with a derma-bond type substance that will eventually go away. What I can't see, but know are there are stitches, under the skin that will dissolve in a week or so. My sternum is held together with stainless steel wires. Those wires will stay in my body forever. My incision runs between my breasts and ends right around bottom center or my diaphram. About two inches under the incision, there is an odd little scabby hole from where a drainage tube protruded from my chest. Reminds me of how a newborn's belly button looks. One day the scab will pop off and I'll have my second little belly button. I have a few red scabs where pace-maker wires came through my skin. My left forearm is extremely bruised where an IV was placed. My right arm has a smaller bruise from another IV. My left groin area has another incision. This one is ugly, thick, about 3 inches long, and covered in derma-bond. This is from where my artery was pulled out to connect me to the heart/lung machine. My right groin had a gigantic bruise from the catheterization that took place two weeks ago.
Ok, the above description was probably TMI, but I feel like sharing! I'm just so happy to be here. And I want to look back on this in the future. Maybe someday down the line, I'll be angry at the kids for doing something stupid or maybe I'll complain about something random or feel angry at my husband. I can read this to kick my ass back into living, not complaining.
Home at last. My mother-in-law, Anne, is staying with us for another week or so. She greets me with a warm smile and asks if I need anything. I sit on the couch, feeling tired, sore and a bit nauseated. I get up, walk to my bedroom and for the first time in five days, I see myself.
I haven't looked in the mirror for five days. Seriously, five days of not seeing myself. I never thought about it before, but that's kinda weird. We see ourselves every day, many times. Head to toe, here is what I look like right now.
My eyes look sunken into my face a bit and I have very dark circles under them. My brown hair looks very witch-like, dry, frizzy and sort of wild looking. I'm already thinking about how I want to get it cut and colored. I have a scab and bruise on my neck where one of the IV catheters was placed. About one inch below my collar bone is the top of my incision. It is exposed, thin and red in places. There are no visible stitches. The inscision is covered with a derma-bond type substance that will eventually go away. What I can't see, but know are there are stitches, under the skin that will dissolve in a week or so. My sternum is held together with stainless steel wires. Those wires will stay in my body forever. My incision runs between my breasts and ends right around bottom center or my diaphram. About two inches under the incision, there is an odd little scabby hole from where a drainage tube protruded from my chest. Reminds me of how a newborn's belly button looks. One day the scab will pop off and I'll have my second little belly button. I have a few red scabs where pace-maker wires came through my skin. My left forearm is extremely bruised where an IV was placed. My right arm has a smaller bruise from another IV. My left groin area has another incision. This one is ugly, thick, about 3 inches long, and covered in derma-bond. This is from where my artery was pulled out to connect me to the heart/lung machine. My right groin had a gigantic bruise from the catheterization that took place two weeks ago.
Ok, the above description was probably TMI, but I feel like sharing! I'm just so happy to be here. And I want to look back on this in the future. Maybe someday down the line, I'll be angry at the kids for doing something stupid or maybe I'll complain about something random or feel angry at my husband. I can read this to kick my ass back into living, not complaining.
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...
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.
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.
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.
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.
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.
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