This morning I planned to run 16 miles. It didn't happen. I barely got in 14.
It was really beautiful this morning. A perfect day for running and I was actually excited about it. Almost instantly, I felt bad. Heavy, sore legs and hips. And my feet! My neuroma started hurting almost right away. My breathing felt funny and I could feel my heart beating in my throat a bit. My nose was a faucet and I had to clear my throat often. I was just so off today. I hope I haven't caught my son's cold. And I hope this isn't what it's going to be like from now on. I actually felt pretty good last week during my 15 miler so today's run was a huge disappointment.
My music was even off today. My shuffle played "Come on Feel the Noise" three times in a row! Yes, I have Quiet Riot on my running playlist! It has a good beat for running. But three times in a row?!? I finished my last, slow mile with Limp Bizkit's "Break Stuff"....and by then, I felt like I was broken.
This morning wasn't a total let down, though. It was incredibly beautiful. Cool temps, bright blue skies, tall trees with leaves changing, the smell of fall, friendly runners and walkers on the trail. Also today was the first time I actually saw people riding horses on the trail. Usually I just maneuver around the piles of horse poo left behind on the trail. I also felt lucky to see a beautiful fox running along the trail. And an excessive amount of bunnies today, too.
Next Saturday I am running the Denver Rock and Roll Half Marathon with some wonderful friends from church. I'm very excited about it. I'd like to finish in 2:10. I'm hoping and praying that I don't have another day like today.
Fundraising for the John Ritter Foundation is coming along. I really hope to reach my goal of $3000 before November. I'm planning a Halloween party/fundraiser for adults and kids at my house on Oct. 20. If you are reading this, you are invited! Hopefully I'll be able to raise a lot of money that night. I still working on getting over my unease with asking people to their face to donate. I absolutely believe in the Foundation and its mission, so I'm working on getting braver. And I do believe that my friends want to support me and my goals. Many of my friends were there, supporting me and my family, when I had surgery and my recovery. I have great friends.
Even though this morning's run was a challenge, I'm still loving this journey!!
Saturday, September 15, 2012
Saturday, September 8, 2012
Observations on the trail
Today I ran 15 miles. It was hard. But I did it and I am still very confident that I will finish the marathon in a respectable time. I'm now running on the Highline Canal Trail just outside of Denver. This is a beautiful trail which winds through the wealthy neighborhoods in Cherry Hills and Greenwood Village...lots of horse estates and sprawling mansions. The first time I ran on the trail, I was very distracted looking at the beautiful homes and wondered what the people who live there do for a living. Now, I just run past them. They are starting to all look the same to me.
I love the people on the trail with me at 7 a.m. Die hard runners, old folks walking their dogs, the occasional biker and me. Everyone is very smiley and friendly. Ninety percent of the folks say "good morning" to me as I huff and puff past them. I enjoy this trail because it is gravel, so there are not many bikers on the trail. I've tried the paved Cherry Creek trail in the city and almost lost an ear and arm to the "Lance Armstrong" wannabes, flying through the city, trying to get that yellow jersey! I love, however, to see lots of people out, enjoying the beautiful mornings and getting some exercise.
This morning was actually the coldest morning I have experienced while running. I could have used gloves and knit hat for the first two miles. Finally, it warmed up just enough to be very comfortable running 15 miles. I imagine that NYC, in November, will be chilly before and during the start of the marathon. I read somewhere that a lot of people wear cheap sweat suits and gloves while waiting to start, then leave them in big heaps on Staten Island before the start of the race. Some folks come out to collect as much as they can to salvage for the homeless and second-hand stores before the sanitation workers show up to discard everything.
Today during mile 7 or so, I swear I ran by Troy Aikmen. He's got a unique look, so if it wasn't him, it was his long-lost twin. I'm not sure why he would be in Denver, running on the Highline Trail, though. Maybe he's here to cover the Bronco home opener tomorrow? Not sure. Maybe, I was hallucinating?!? If that was the case, I wish my brain would hallucinate someone else, perhaps a Hugh Jackman, or David Beckham? I did "see" Aikman during mile 7. This seems to be a tough mile for me lately. My neuroma on my right foot is screaming and my legs are sore. During this time I have to fight the urge to curl up into the fetal position in the middle of the trail and become road kill for the many runners, including various high school cross country teams, out training. After mile 8 or so, I'm much, much better and feeling energized and invincible.
Today I saw a funny shirt. It read SHUT UP LEGS. I must get one of those.
I love the people on the trail with me at 7 a.m. Die hard runners, old folks walking their dogs, the occasional biker and me. Everyone is very smiley and friendly. Ninety percent of the folks say "good morning" to me as I huff and puff past them. I enjoy this trail because it is gravel, so there are not many bikers on the trail. I've tried the paved Cherry Creek trail in the city and almost lost an ear and arm to the "Lance Armstrong" wannabes, flying through the city, trying to get that yellow jersey! I love, however, to see lots of people out, enjoying the beautiful mornings and getting some exercise.
This morning was actually the coldest morning I have experienced while running. I could have used gloves and knit hat for the first two miles. Finally, it warmed up just enough to be very comfortable running 15 miles. I imagine that NYC, in November, will be chilly before and during the start of the marathon. I read somewhere that a lot of people wear cheap sweat suits and gloves while waiting to start, then leave them in big heaps on Staten Island before the start of the race. Some folks come out to collect as much as they can to salvage for the homeless and second-hand stores before the sanitation workers show up to discard everything.
Today during mile 7 or so, I swear I ran by Troy Aikmen. He's got a unique look, so if it wasn't him, it was his long-lost twin. I'm not sure why he would be in Denver, running on the Highline Trail, though. Maybe he's here to cover the Bronco home opener tomorrow? Not sure. Maybe, I was hallucinating?!? If that was the case, I wish my brain would hallucinate someone else, perhaps a Hugh Jackman, or David Beckham? I did "see" Aikman during mile 7. This seems to be a tough mile for me lately. My neuroma on my right foot is screaming and my legs are sore. During this time I have to fight the urge to curl up into the fetal position in the middle of the trail and become road kill for the many runners, including various high school cross country teams, out training. After mile 8 or so, I'm much, much better and feeling energized and invincible.
Today I saw a funny shirt. It read SHUT UP LEGS. I must get one of those.
Thursday, July 26, 2012
My body is sore
My body is sore but I'm very motivated. I am getting into my marathon training and running four times a week. Long runs on Saturday. I plan to run nine miles this Saturday. I'm still not sure how the body gets to 26.2 miles in one day! Five miles used to be a huge challenge for me, but now it is my "easy" run, so I guess it gets easier. (hahaha!!! Easier!?!?)
I am excited to be on Team Ritter for many reasons. The primary reason that I will talk about today is that I get to raise awareness of aortic aneurysm and dissection. I think awareness is the first step in saving lives from aortic dissection. Awareness for the person and for the first responders and ER doctors. I sometimes think about what would have happened if my aneurysm hadn't been diagnosed and began to dissect. What if I, a young, healthy, fit woman, presented at an ER with severe chest pains? I certainly don't fit the profile of someone with heart or aortic disease. Would the doctors consider aortic dissection? Would they think I was having a panic attack or maybe pulled a muscle while working out?
The Ritter Rules (johnritterfoundation.org/ritter-rules)
Ritter Rules are life-saving reminders to recognize, treat and prevent thoracic aortic dissection, a deadly tear in the large artery that carries blood away from the heart. Named for actor John Ritter, who died of a thoracic aortic dissection, Ritter Rules combine knowledge with action. Know the urgency, symptoms, who is most at-risk and which imaging tests are required to diagnose this medical emergency.
Did you know that the death rate for an aortic dissection increases one percent every hour the diagnosis and surgical repair are delayed? The Ritter Rules state that aortic dissection can mimic heart attack. Heart attacks are far more common than aortic dissection, but if a heart attack or other diagnosis is not clearly and quickly established, then aortic dissection should be quickly considered and ruled out. This is especially important if a patient has a family history of thoracic aortic aneurysm/dissection or features of a genetic syndrome that predisposes the patient to an aortic aneurysm or dissection.
In my case, I was born with a bicuspid aortic valve (two leaflets instead of the typical three). I didn't know that I had this condition until June 12, 2009. This is the date I received the diagnosis of bicuspid aortic valve along with the serious condition of an ascending aortic aneurysm of 5.2 cm. Two weeks later on June 26th, I had open chest surgery to repair the aorta.
Bicuspid aortic valve disease puts you at risk. If you have a bicuspid aortic valve, or have had a bicuspid aortic valve replaced, you need to be monitored for thoracic aortic disease. Only three types of imaging studies can identify aortic aneurysms and dissections: CT, MRI and transesophageal echocardiogram.
With all that said, I'm healthy and feeling well enough to train for the NY Marathon. I'm running in memory of all who have died of aortic dissection, including the beloved actor John Ritter. I'm running for myself. I have been given a wonderful gift. A gift of facing my mortality and looking at my little children and wondering what it would be like for them if I wasn't around. The gift of wondering what would have happened if I had died. The gift of imagining a different, stronger, better life for myself. I'm running for my family and friends who love me and are so happy that I'm alive and well. I'm running for myself. For my health, for my strong heart, for my strong legs and my healthy body.
My body is sore. But I get to live to feel the soreness, to feel myself push through that last mile of a training run. I'm excited and I'm motivated to see what the next days, weeks and months hold for me.
http://www.crowdrise.com/TeamRitterNYCMarathon2012/fundraiser/amyderksen
I am excited to be on Team Ritter for many reasons. The primary reason that I will talk about today is that I get to raise awareness of aortic aneurysm and dissection. I think awareness is the first step in saving lives from aortic dissection. Awareness for the person and for the first responders and ER doctors. I sometimes think about what would have happened if my aneurysm hadn't been diagnosed and began to dissect. What if I, a young, healthy, fit woman, presented at an ER with severe chest pains? I certainly don't fit the profile of someone with heart or aortic disease. Would the doctors consider aortic dissection? Would they think I was having a panic attack or maybe pulled a muscle while working out?
The Ritter Rules (johnritterfoundation.org/ritter-rules)
Ritter Rules are life-saving reminders to recognize, treat and prevent thoracic aortic dissection, a deadly tear in the large artery that carries blood away from the heart. Named for actor John Ritter, who died of a thoracic aortic dissection, Ritter Rules combine knowledge with action. Know the urgency, symptoms, who is most at-risk and which imaging tests are required to diagnose this medical emergency.
Did you know that the death rate for an aortic dissection increases one percent every hour the diagnosis and surgical repair are delayed? The Ritter Rules state that aortic dissection can mimic heart attack. Heart attacks are far more common than aortic dissection, but if a heart attack or other diagnosis is not clearly and quickly established, then aortic dissection should be quickly considered and ruled out. This is especially important if a patient has a family history of thoracic aortic aneurysm/dissection or features of a genetic syndrome that predisposes the patient to an aortic aneurysm or dissection.
In my case, I was born with a bicuspid aortic valve (two leaflets instead of the typical three). I didn't know that I had this condition until June 12, 2009. This is the date I received the diagnosis of bicuspid aortic valve along with the serious condition of an ascending aortic aneurysm of 5.2 cm. Two weeks later on June 26th, I had open chest surgery to repair the aorta.
Bicuspid aortic valve disease puts you at risk. If you have a bicuspid aortic valve, or have had a bicuspid aortic valve replaced, you need to be monitored for thoracic aortic disease. Only three types of imaging studies can identify aortic aneurysms and dissections: CT, MRI and transesophageal echocardiogram.
With all that said, I'm healthy and feeling well enough to train for the NY Marathon. I'm running in memory of all who have died of aortic dissection, including the beloved actor John Ritter. I'm running for myself. I have been given a wonderful gift. A gift of facing my mortality and looking at my little children and wondering what it would be like for them if I wasn't around. The gift of wondering what would have happened if I had died. The gift of imagining a different, stronger, better life for myself. I'm running for my family and friends who love me and are so happy that I'm alive and well. I'm running for myself. For my health, for my strong heart, for my strong legs and my healthy body.
My body is sore. But I get to live to feel the soreness, to feel myself push through that last mile of a training run. I'm excited and I'm motivated to see what the next days, weeks and months hold for me.
http://www.crowdrise.com/TeamRitterNYCMarathon2012/fundraiser/amyderksen
Monday, July 2, 2012
Amy's Marathon-Heart Blog
It's been a few years since I blogged. I figured that after my surgery and recovery, my life was back to normal. Who wants to read about normal? But, I have some exciting news. I have been selected to a team to run the NYC Marathon on Nov. 4, 2012. I'm going to be running with Team Ritter to raise funds and awareness for the John Ritter Foundation for Aortic Health (JRF). I have never run a marathon. My longest race was 10k. I am committed, though, to raising $3000 for the JRF, finishing the race in a respectable time, and getting back into training.
The John Ritter Foundation for Aortic Health provides support for individuals and families affected by aortic disease, works to increase awareness of aortic disease among the general public and the medical professionals, and raises funds to support education and research.
This new chapter of Amy's Heart Blog will chronicle my training, thoughts about training, and any other thing I feel like talking about.
Saturday, August 8, 2009
Six weeks post op
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.
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.
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.
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