Saturday, December 26, 2009
Tuesday, December 15, 2009
Winter Concerts, 2009
Our girls' orchestra and chorus concerts were these past two Mondays. Listen to Green Sleeves and Carol of the Bells!
Wednesday, November 25, 2009
Travels
I blogged before my October procedure that I wouldn't sit still for long afterward, and I think I've succeeded so far. In the 5 weeks since, we've been to the Poconos and central Pennsylvania twice (friends, family, and shopping), I've traveled to New Jersey (sibling reunion), and to West Virginia (road trip). Road trip photos are here.
p.s. This Thanksgiving I'm thankful for the heroes of the medical profession!
p.s. This Thanksgiving I'm thankful for the heroes of the medical profession!
Tuesday, November 10, 2009
Good checkup
We met with Dr Ringel last week, the guy that did my stent procedure, and also had an echocardiogram. Hard to believe it's already a month ago yesterday. Anyway, the echo showed that the procedure did exactly what it was meant to do. My heart is happy and so am I!
I'll be on aspirin for another 5 months, but that's my only medication. I like that. I'm also free to resume all whatever activities I was doing before ... running, biking, weights, etc. That's a great feeling, for sure.
My next checkup will be a year from now. Ah, now to enjoy the holidays!
I'll be on aspirin for another 5 months, but that's my only medication. I like that. I'm also free to resume all whatever activities I was doing before ... running, biking, weights, etc. That's a great feeling, for sure.
My next checkup will be a year from now. Ah, now to enjoy the holidays!
Tuesday, October 20, 2009
Monday, October 19, 2009
Cautiously Very Optimistic
It's wonderful knowing that people are thinking of me whenever I hear the words "so, how are you feeling"? But it's also a sign that I haven't blogged recently!
In short, I've been feeling great, and am just starting to explore what exercise feels like. Tonight I mowed half of our back yard (push mower, not self-propelled) for about 25 minutes total. A few weeks ago I mowed the same area and had to pause about once per minute, and stop to sit about every 10 minutes. I feel so much better than that now, the relief is wonderful. I even find myself running up the stairs at home and work, which is much more like me :-)
Oh, and yes I am healing from the catheters inserted into each of my upper thighs. The right one was about the diameter of a drinking straw, which is painful to think about but has resulted in only a bit of bruising. Fortunately the soreness in my legs largely doesn't affect me, just changing slightly how I might sit or lay down. I suspect that'll be gone in a week or two.
As we get into November I'll have a better sense of where I'm at. I'll start back on the treadmill, which has been the best way to measure myself, and see how I do. It would be awesome if I can pick up where I left off last winter! I'll also have a checkup in about 2 weeks, including an echocardiogram, so we'll see if the equipment agrees with how I'm feeling.
So, call it cautiously very optimistic!
In short, I've been feeling great, and am just starting to explore what exercise feels like. Tonight I mowed half of our back yard (push mower, not self-propelled) for about 25 minutes total. A few weeks ago I mowed the same area and had to pause about once per minute, and stop to sit about every 10 minutes. I feel so much better than that now, the relief is wonderful. I even find myself running up the stairs at home and work, which is much more like me :-)
Oh, and yes I am healing from the catheters inserted into each of my upper thighs. The right one was about the diameter of a drinking straw, which is painful to think about but has resulted in only a bit of bruising. Fortunately the soreness in my legs largely doesn't affect me, just changing slightly how I might sit or lay down. I suspect that'll be gone in a week or two.
As we get into November I'll have a better sense of where I'm at. I'll start back on the treadmill, which has been the best way to measure myself, and see how I do. It would be awesome if I can pick up where I left off last winter! I'll also have a checkup in about 2 weeks, including an echocardiogram, so we'll see if the equipment agrees with how I'm feeling.
So, call it cautiously very optimistic!
Monday, October 12, 2009
Organizing photos as part of recovery
During last year's recovery I figured out how to best organize and share our photos. Great fun for me. So I figured it's only appropriate that today, while I'm off for Columbus Day and resting from Friday's procedure, I should sort through the last few months of photos and share them. Take a look at my Flickr account -- there's about a page and half worth of photos that are new!
Sunday, October 11, 2009
The next 4 weeks
Funny, I just woke up and was laying here wondering what's on tap for
the day. And then I remembered, oh yeah, I just returned from the
hospital. Something tells me that's a good sign :-)
the day. And then I remembered, oh yeah, I just returned from the
hospital. Something tells me that's a good sign :-)
Got up, checked the kids, grabbed my MP3 player, and came back to bed.
No soreness in my legs to speak of, despite having a catheter in each
- one was the diameter of a drinking straw, I'm told! My shoulders are
a tiny bit sore, like when I go to long without exercise. But this is
from having them above my head for most of the procedure, necessary so
the imaging machines could keep an eye on things from the side since
the sternum otherwise blocks their view.
So, for the next week I'll be taking it easy, walking a lot,
especially on idyllic autumn days like today is shaping up to be. I
can drive, work, and eat regular foods, just nothing that will put too
much stress on my legs which they tell me heal from the inside out.
For the balance of the month I can exercise, just nothing too vigorous
and nothing that could impact my chest. So, frisbee, tennis, running,
and paved trail biking are in. I'll hold off on mountain & road
biking, go karting, and weight lifting until November.
Assuming my 3 week checkup goes well, I'll finally be able to really
get back in shape. I must say I'm psyched for that!
Saturday, October 10, 2009
Goodness
People are often surprised that I tend to sleep _better_ when I'm away
from home. It's not that I don't like my own bed, it's just the sense
of being surrounded by unfinished chores. When we're away, especially
on vacation, there's no gutters to fix, screens to replace, computers
to manage, etc. I still get a good 7 hours, mind you, but after that
I'm up and at it.
from home. It's not that I don't like my own bed, it's just the sense
of being surrounded by unfinished chores. When we're away, especially
on vacation, there's no gutters to fix, screens to replace, computers
to manage, etc. I still get a good 7 hours, mind you, but after that
I'm up and at it.
But I must say I surprised myself when I slept great in my hospital
room last night! I was up at 2 and 5 for the nurse, but otherwise was
blissfully asleep from 11pm until 8:30 this morning. Awesome!
To add to the goodness, I just got my discharge approval, my IV
removed, and the EKG monitor off. I'm a free man! Time to get cleaned
up and wait for my ride.
Friday, October 9, 2009
Sleep for all
Poor guy sharing a room with me is in some real pain (stomach I
think). He's been groaning since he arrived about an hour ago. I tried
getting his mind off it by talking to him about his work or whatever,
but no dice.
think). He's been groaning since he arrived about an hour ago. I tried
getting his mind off it by talking to him about his work or whatever,
but no dice.
Ann Marie went home just before 9, and I just know she's gonna zonk
out tonight. A stressful day, by its nature not by any occurrence, and
up early took its toll. Allison too got little sleep ... she was so
concerned about me, as I would be about her!
As for me, I feel pretty darned good. No pain meds needed. Sure, the
IV in my hand is a bit uncomfortable, and the "inflatable bandages" on
my legs are squeezing my skin a bit, but mostly I'm just tired. My
awesome nurse, Barb, got me some ear plugs, though, some I'm going to
sleep great!
Resting now, walking soon
Hello all ... Chris here. Just finished a nice visit with my Mom and
stepdad. I hope I'm able to drive 5 hours roundtrip when I'm 80! I
guess no matter how old you are you always want check up on your kids!
stepdad. I hope I'm able to drive 5 hours roundtrip when I'm 80! I
guess no matter how old you are you always want check up on your kids!
The procedure went well, though Dr Ringel quickly determined that the
balloon alone would not do the trick. This means we went to "step 2",
a stainless steel stent 17.5 mm in diameter and about 35 mm long. That
is slightly smaller in diameter than normal, but offer plenty of
bloodflow to the lungs. This also means I effectively have no
pulmonary valve, which still blows my mind! Again, being able to do
this depends on healthy lungs, so good thing the only I ever smoked
were my tires!
I'm resting fine, just looking forward to walking. They have me laying
down so I don't injure my legs where the 2 catheters were inserted. No
pain to speak of, which I'm liking!
Ann Marie is back. Must visit with her now! More later.
Just got an update -
Just got an update - they put in a stent and all went well. i expect 2 talk 2 the dr. and c chris soon.
Chris went into the cath
Chris went into the cath lab at 8ish. The nurse just called - they r getting ready 2 dilate. She'll update again in a while.
Heading In
I have my bag packed, my MP3 player, and books to read for both Ann Marie and I. There hasn't been much preparation needed, just two units of blood set aside over the past week. Otherwise we've been as busy as ever. With Ray's family's help we nearly finished weeding and mulching on Sunday. Eddie had a great cross country event Wednesday, passing four runners on the final stretch, with only one shoe! The girls started gymnastics this week. Elsie came to town to help out. And I even washed and waxed my Honda last night -- entirely unnecessary, but for me, relaxing.
We're heading to Hopkins in about 15 minutes. I should be up and walking this afternoon, though perhaps a bit groggy, as if I had one of those long days. I should come home sometime tomorrow.
Thanks to all for the good wishes these past few days - sorry I couldn't get back to each of you!
We're heading to Hopkins in about 15 minutes. I should be up and walking this afternoon, though perhaps a bit groggy, as if I had one of those long days. I should come home sometime tomorrow.
Thanks to all for the good wishes these past few days - sorry I couldn't get back to each of you!
Saturday, September 19, 2009
Playing it safe
You'd think a day off work would mean no doctor appointments. But
after feeling what I guessed to be an arythmia (irregular heartbeat) I
checked in with my cardiologist and was given a heart monitor to wear
for 24 hours. Now that I'm wearing a wire, I've completed the ensemble
with a hat and sunglasses.
after feeling what I guessed to be an arythmia (irregular heartbeat) I
checked in with my cardiologist and was given a heart monitor to wear
for 24 hours. Now that I'm wearing a wire, I've completed the ensemble
with a hat and sunglasses.
Anyway, as the evening came, I felt a bit fatigued for someone who had
the day off, and had times where I thought my heartbeat felt a bit
stonger than usual. My cardiologist was off for the night, but I spoke
with his backup, a doctor was from another practice whom I'd never
met. He felt everything sounded fine but I might want a full EKG for
peace of mind. 3 hours later I was home from the hospital doing fine.
Other then a lot of waiting for blood test results and a busy staff,
we had a few good laughs with the emergency room doctor who said
everything looked fine.
So, all is well and we're on our way to the Mid Atlantic Krahe meetup
in Richmond. It's a beautiful day and my new U2 mix is playing. Ah,
that's more like a relaxing day off!
Saturday, September 12, 2009
Some clarifications
I've made a few small edits to recent posts. Depending on how you're reading this, you might have missed them.
- My catheter procedures are "minimally-invasive" not "non-invasive". But let me tell you, when compared to open heart surgery, a small incision will certainly feel non-invasive :-)
- My upcoming procedure is Friday October 9th, not 6th. The 6th doesn't coincide with a Friday until 2017, and believe me, I'm not waiting 8 years to feel better!
A Fall to look forward to
Like many autumns past, our calendar is filling up with some great things. Ann Marie is doing quite well in her new job as teachers' secretary at an elementary school of about 700 students. She works afternoons Monday through Friday, and only on a handful of days when the kids are off. My work is as challenging and fun as ever, with a production release coming up soon. The kids have started in school and are enjoying friends and activities such as cross country, helping with kids in special education, and participating in youth events through church. We're meeting in Richmond with my brothers' families later this month, and in October I'm attending a sibling reunion in New Jersey. On weekends and evenings we're doing some cleanup and fixing around the house, and with time that remains we're getting as much mountain biking in as weather and daylight permit. Oh, and as I write this Eddie is about halfway through his 2 day go-karting class (one our required preparations for driving :-)
That all of these things are possible despite my planned heart procedure in October makes me smile. It's truly a blessing that I feel well enough now to continue working and playing, and that medicine has advanced so much that a quick recovery should be possible. Sure, there's a small chance that an unexpected complication could occur, meaning open heart surgery and another long recovery, but in this case I like Ann Marie's philosophy of "plan for the best, deal with the worst".
That said, on with the details. The procedure is a minimally-invasive balloon dilation of the pulmonary artery. This means a catheter is inserted through my inner thigh and up to the narrowed area of the artery. The doctor then inflates a balloon to expand the artery and determines if it looks like it will stay that way. If not, he then inserts a stainless steel stent, a metal tube of thin wire that ensures a permanent fixed diameter.
The procedure is scheduled for Friday, October 9th, at Johns Hopkins Hospital. Dr. Richard Ringel, an interventional cardiologist who specializes in catheter procedures such as this, will be leading the small team. Anesthesia will keep me awake but only marginally aware of my surroundings. One of two surgeons, Dr. Duke Cameron or his partner, will be nearby in case surgery becomes necessary. I'll go in at 7am for prep and should be in my room resting by noon, hopefully up and walking around not long afterward. I can have visitors, so if you're thinking of stopping please do! Just be sure to coordinate with Ann Marie.
I'll stay overnight and should be released in the morning. I'll rest over the weekend, eat well, watch some good movies, and walk as much as possible. I should be back to work Monday, maybe a little sore but ready for a full week.
In the weeks that follow I'll increase exercise and see how I feel. If my strength and endurance are where they need to be, I plan to take some time off work, get in some serious mountain biking before the winter comes, and do a weekend or two away with the family. After all, that's what the Fall is all about!
That all of these things are possible despite my planned heart procedure in October makes me smile. It's truly a blessing that I feel well enough now to continue working and playing, and that medicine has advanced so much that a quick recovery should be possible. Sure, there's a small chance that an unexpected complication could occur, meaning open heart surgery and another long recovery, but in this case I like Ann Marie's philosophy of "plan for the best, deal with the worst".
That said, on with the details. The procedure is a minimally-invasive balloon dilation of the pulmonary artery. This means a catheter is inserted through my inner thigh and up to the narrowed area of the artery. The doctor then inflates a balloon to expand the artery and determines if it looks like it will stay that way. If not, he then inserts a stainless steel stent, a metal tube of thin wire that ensures a permanent fixed diameter.
The procedure is scheduled for Friday, October 9th, at Johns Hopkins Hospital. Dr. Richard Ringel, an interventional cardiologist who specializes in catheter procedures such as this, will be leading the small team. Anesthesia will keep me awake but only marginally aware of my surroundings. One of two surgeons, Dr. Duke Cameron or his partner, will be nearby in case surgery becomes necessary. I'll go in at 7am for prep and should be in my room resting by noon, hopefully up and walking around not long afterward. I can have visitors, so if you're thinking of stopping please do! Just be sure to coordinate with Ann Marie.
I'll stay overnight and should be released in the morning. I'll rest over the weekend, eat well, watch some good movies, and walk as much as possible. I should be back to work Monday, maybe a little sore but ready for a full week.
In the weeks that follow I'll increase exercise and see how I feel. If my strength and endurance are where they need to be, I plan to take some time off work, get in some serious mountain biking before the winter comes, and do a weekend or two away with the family. After all, that's what the Fall is all about!
Wednesday, September 9, 2009
I'm scheduled
I'm scheduled Friday, October 9th for a balloon dilation of the pulmonary artery. One night in the hospital and back to work on Monday. More later.
Tuesday, September 1, 2009
And closer
Spoke on the phone with my surgeon on Sunday afternoon. He was on his way to Cuba for an annual humanitarian visit where he and other doctors operate on children in need. Neat.
Dr. Cameron agreed with Dr. Ringel that we aren't burning any bridges with the minimally-invasive options we're looking at, and that none of them complicate future surgery. That Dr. Cameron has already replaced at least two Melody valves, the very new procedure I've mentioned, gives us great confidence in that assessment.
We also discussed having the first and, if needed, second procedure done at one of the centers that can also do the third step, such as Columbia University in New York. It seems that wouldn't be necessary, since any emergency condition, which was the scenario that made me pose the question, would be handled surgically. If I do need the Melody valve, it would be some time after the second procedure, after I was recovered and exercising, not as a quick fix to a problem discovered in the "cath lab", as they call it.
Next step? Meet with Dr. Ringel for some final questions, then get this on the calendar!
Dr. Cameron agreed with Dr. Ringel that we aren't burning any bridges with the minimally-invasive options we're looking at, and that none of them complicate future surgery. That Dr. Cameron has already replaced at least two Melody valves, the very new procedure I've mentioned, gives us great confidence in that assessment.
We also discussed having the first and, if needed, second procedure done at one of the centers that can also do the third step, such as Columbia University in New York. It seems that wouldn't be necessary, since any emergency condition, which was the scenario that made me pose the question, would be handled surgically. If I do need the Melody valve, it would be some time after the second procedure, after I was recovered and exercising, not as a quick fix to a problem discovered in the "cath lab", as they call it.
Next step? Meet with Dr. Ringel for some final questions, then get this on the calendar!
Saturday, August 29, 2009
One step closer
I love it when research on multiple fronts finds the same conclusions.
We met this week with my cardiologist, who first identified my problem with an echocardiogram back in June. It was great to step back and get his perspective. He definitely favors the minimally-invasive procedures as a first step, and echo'd the words from Dr. Ringel, that my problem has "no perfect solution". After reaching out to the director of cardiology at the National Institutes of Health about my case, he learned that Columbia University in New York is one the centers of excellence on pulmonary artery and valve treatment. If I end up with a Melody valve, the 3rd non-invasive step I mentioned, Columbia is quite likely the hospital that would treat me.
We also learned more about the 2nd minimally-invasive step that would effectively eliminate my pulmonary valve. This is the procedure that sounded so weird to us last week. It seems, though, that your heart can tolerate a leaking or missing pulmonary valve when your lungs are healthy. Unhealthy lungs, like those from smoking or lung disease, create back-pressure when the heart pumps blood to the lungs from the right ventricle. Where normal pressure is about 30-35, unhealthy lungs can push this to 60 or 70, causing problems that back up into other areas of the heart. Someone in this condition definitely needs a pulmonary valve. My pressure measured about 27 before surgery, which is a great indication that this, if needed, could work for me. Good thing the only thing I ever smoked were my tires!
We met this week with my cardiologist, who first identified my problem with an echocardiogram back in June. It was great to step back and get his perspective. He definitely favors the minimally-invasive procedures as a first step, and echo'd the words from Dr. Ringel, that my problem has "no perfect solution". After reaching out to the director of cardiology at the National Institutes of Health about my case, he learned that Columbia University in New York is one the centers of excellence on pulmonary artery and valve treatment. If I end up with a Melody valve, the 3rd non-invasive step I mentioned, Columbia is quite likely the hospital that would treat me.
We also learned more about the 2nd minimally-invasive step that would effectively eliminate my pulmonary valve. This is the procedure that sounded so weird to us last week. It seems, though, that your heart can tolerate a leaking or missing pulmonary valve when your lungs are healthy. Unhealthy lungs, like those from smoking or lung disease, create back-pressure when the heart pumps blood to the lungs from the right ventricle. Where normal pressure is about 30-35, unhealthy lungs can push this to 60 or 70, causing problems that back up into other areas of the heart. Someone in this condition definitely needs a pulmonary valve. My pressure measured about 27 before surgery, which is a great indication that this, if needed, could work for me. Good thing the only thing I ever smoked were my tires!
Friday, August 21, 2009
Options are a good thing
Well we don't have any decisions yet but we sure do have a lot of new information. Let's see if I can get all of this across succinctly.
After my last post, my surgeon received feedback from the third colleague whose opinion he was seeking. He forwarded that doctor's email, as he had the others, then put them all into perspective for us in an evening phone call. The consensus is to attempt delaying surgery, perhaps by 10 years or more, with some minimally-invasive solutions.
We've since met with a cardiac catheterization specialist at Johns Hopkins, Dr. Richard Ringel. Smart guy. He spent plenty of time with us, never making us feel rushed, and explained things as if he anticipated each of our questions (we're wondering if our surgeon tipped him off ;-) Dr. Ringel explained a series of nearly-outpatient procedures, each designed to increase the blood flow to my lungs, and each a preparation for the next.
The first is a balloon procedure that would expand my pulmonary artery and test my heart's reaction to that. It would be a fine balance of restoring enough blood flow without causing the pulmonary valve to leak significantly, while hoping scarring doesn't return me to where I am now. We wouldn't know if it worked until some weeks later, but if it did we'd be extremely happy to stop there and keep an eye on things in the years to come.
If the balloon didn't do the trick, Dr. Ringel would install a coronary stent to hold open the pulmonary artery and valve. The procedure would guarantee my lungs received the blood they need, but would require my right ventricle to work harder than normal. As odd as that sounds, one of Dr. Ringel's patients, a guy much like me, has been living happily like this for 5 years, exercise and all. We're still trying to wrap our heads around this one, and will talk with my surgeon and cardiologist to get their perspective. It just sounds so odd.
The third procedure, if the first two didn't work, would be a catheter installation of a new pulmonary valve and stent. Just a few weeks ago an FDA panel voted 12-0 for approval of this valve, in part because of Dr. Ringel's recommendation. It's been in use experimentally since 1999 and in European hospitals since 2006. These valves don't last forever, however. When the first one wears out a second can sometimes be inserted inside the first, together giving a patient about 8 years of pulmonary function after just two nights in the hospital and two weekends of rest. Not a bad deal.
Before I close I should mention something else. All this talk of delaying surgery might make you think I don't want to go through that again. Well if you thought that, you'd be right! But honestly if I knew that one surgery now would be all I need for the next 50 years, I wouldn't hesitate. It's just that replacement parts used surgically simply don't last as long as the originals!
So, more consideration and discussions in the coming weeks, and definitely some next step, whether minimally-invasive or full surgery in the next couple of months. Thanks so much for listening in -- it's much appreciated!
After my last post, my surgeon received feedback from the third colleague whose opinion he was seeking. He forwarded that doctor's email, as he had the others, then put them all into perspective for us in an evening phone call. The consensus is to attempt delaying surgery, perhaps by 10 years or more, with some minimally-invasive solutions.
We've since met with a cardiac catheterization specialist at Johns Hopkins, Dr. Richard Ringel. Smart guy. He spent plenty of time with us, never making us feel rushed, and explained things as if he anticipated each of our questions (we're wondering if our surgeon tipped him off ;-) Dr. Ringel explained a series of nearly-outpatient procedures, each designed to increase the blood flow to my lungs, and each a preparation for the next.
The first is a balloon procedure that would expand my pulmonary artery and test my heart's reaction to that. It would be a fine balance of restoring enough blood flow without causing the pulmonary valve to leak significantly, while hoping scarring doesn't return me to where I am now. We wouldn't know if it worked until some weeks later, but if it did we'd be extremely happy to stop there and keep an eye on things in the years to come.
If the balloon didn't do the trick, Dr. Ringel would install a coronary stent to hold open the pulmonary artery and valve. The procedure would guarantee my lungs received the blood they need, but would require my right ventricle to work harder than normal. As odd as that sounds, one of Dr. Ringel's patients, a guy much like me, has been living happily like this for 5 years, exercise and all. We're still trying to wrap our heads around this one, and will talk with my surgeon and cardiologist to get their perspective. It just sounds so odd.
The third procedure, if the first two didn't work, would be a catheter installation of a new pulmonary valve and stent. Just a few weeks ago an FDA panel voted 12-0 for approval of this valve, in part because of Dr. Ringel's recommendation. It's been in use experimentally since 1999 and in European hospitals since 2006. These valves don't last forever, however. When the first one wears out a second can sometimes be inserted inside the first, together giving a patient about 8 years of pulmonary function after just two nights in the hospital and two weekends of rest. Not a bad deal.
Before I close I should mention something else. All this talk of delaying surgery might make you think I don't want to go through that again. Well if you thought that, you'd be right! But honestly if I knew that one surgery now would be all I need for the next 50 years, I wouldn't hesitate. It's just that replacement parts used surgically simply don't last as long as the originals!
So, more consideration and discussions in the coming weeks, and definitely some next step, whether minimally-invasive or full surgery in the next couple of months. Thanks so much for listening in -- it's much appreciated!
Tuesday, August 18, 2009
Opinions starting to come in
Today we received two of four opinions my surgeon is seeking. Granted, they were laden with terms that only a cardiac surgeon could understand and love, and we haven't gotten my surgeon's interpretation yet.
Our read, though, is that the two surgeons differ somewhat on recommended next steps. We were glad to see sprinklings of phrases like "might be worth a try" and "might delay the need for reoperation" when referring to certain non-invasive procedures. It's also good to know that at least one of the surgeons has treated several cases like mine, and many if not all had positive outcomes.
Nothing definitive, of course, but figured I'd share what we know!
Our read, though, is that the two surgeons differ somewhat on recommended next steps. We were glad to see sprinklings of phrases like "might be worth a try" and "might delay the need for reoperation" when referring to certain non-invasive procedures. It's also good to know that at least one of the surgeons has treated several cases like mine, and many if not all had positive outcomes.
Nothing definitive, of course, but figured I'd share what we know!
Sunday, August 2, 2009
Still waiting, but traveling
We're still in a holding pattern waiting for the busy experts who'll help decide what's next. This includes my surgeon, who recently performed surgeries on each of the three days that were supposed to be the start of his family vacation.
In the meantime I've been feeling pretty much the same, but exploring my limits a little. I tried running for drills at Ultimate practice, but that was a bit much. Swimming and mountain biking have come easier, though, which is great. I'm especially psyched about mountain biking as I'm really enjoying the bike I bought last year, the miles of great trails near home, and my sometimes riding partner, Nika!
Also good news that, after reviewing things, my surgeon is OK with me traveling. My work schedule permitting, we'll be heading to Cleveland this month for parties on both sides of the family. Should be fun!
In the meantime I've been feeling pretty much the same, but exploring my limits a little. I tried running for drills at Ultimate practice, but that was a bit much. Swimming and mountain biking have come easier, though, which is great. I'm especially psyched about mountain biking as I'm really enjoying the bike I bought last year, the miles of great trails near home, and my sometimes riding partner, Nika!
Also good news that, after reviewing things, my surgeon is OK with me traveling. My work schedule permitting, we'll be heading to Cleveland this month for parties on both sides of the family. Should be fun!
Friday, July 17, 2009
Tuesday, July 14, 2009
Teamwork
When friend Jeff and I were autocrossing regularly, we got pretty good at planning our approach to a course before we each made our first run. We'd watch other drivers, occasionally time them, note where they placed each wheel, watch which turns they struggled with and how they improved on subsequent passes. Between our runs we'd compare notes on weight transfer, braking points, exit speeds, and adhesion limits ("it's either sticking or it's going in the trees!"). Our pre-run planning and mid-race adjustments often paid off, for not only did we improve our times on every run, we'd both finish at or near the top of our classes. Working together made both of us better drivers.
As Ann Marie and I seek a path forward with my heart condition, we're seeing my doctors rely on the wisdom and expertise of their peers in much the same way. While we found more questions then answers in my appointment today, we're comforted knowing some very smart people are on the job.
Now to the details. We want to share the pertinent info so everyone has it, but know we run the risk of glazing your eyes over (as ours sometimes do). Sure, we might lean on you for wisdom or support, but we promise we won't quiz you on specifics as long as you do the same for us :-)
That said, this morning's CT scan shows the narrowing is in the pulmonary artery, at the point where the donated tissue meets mine. The valve itself is doing fine, which is great. If the doctors and we conclude a surgical replacement of the affected area is our best option, there's a fair chance this longer-lasting valve can be spared. Regardless, the man-made material used in a new artery would set me up for a simpler surgery if and when the valve needs to be replaced.
But surgery isn't necessarily the only option. A possible alternative still being discussed is the balloon and stint procedure I mentioned in a previous post. To succeed, it would need to widen the artery without causing the pulmonary valve to leak, or at least leak significantly. A valve that leaked too much would again lead to surgery, perhaps on the same day. A delicate decision, considering the degree of narrowing.
To reinforce the team, our surgeon has recommended two respected Ross procedure experts be consulted. One doctor is from St. Louis and the other Philadelphia, the latter primarily a pediatric surgeon where the Ross procedure is a necessity since the living tissue grows with the child. We're all for more expertise.
What these doctors will also consider, assuming I have surgery, is our surgeon's suggestion for a related preventative procedure. The car analogy, if crude, comes to my mind: "if you're going to replace the timing chain you might was well replace the water pump". In my case, it's a portion of the aortic artery which has widened since surgery. It isn't causing any problems, but could in the future. Like the problem with the pulmonary artery, the widening of the aortic artery is something that happens to many Ross procedure patients. For me, it just happened a lot sooner than most.
We'll sort all this out over the coming weeks. We appreciate your thoughts, prayers, and help. In the meantime, I think it's time for some more autocrossing :-)
As Ann Marie and I seek a path forward with my heart condition, we're seeing my doctors rely on the wisdom and expertise of their peers in much the same way. While we found more questions then answers in my appointment today, we're comforted knowing some very smart people are on the job.
Now to the details. We want to share the pertinent info so everyone has it, but know we run the risk of glazing your eyes over (as ours sometimes do). Sure, we might lean on you for wisdom or support, but we promise we won't quiz you on specifics as long as you do the same for us :-)
That said, this morning's CT scan shows the narrowing is in the pulmonary artery, at the point where the donated tissue meets mine. The valve itself is doing fine, which is great. If the doctors and we conclude a surgical replacement of the affected area is our best option, there's a fair chance this longer-lasting valve can be spared. Regardless, the man-made material used in a new artery would set me up for a simpler surgery if and when the valve needs to be replaced.
But surgery isn't necessarily the only option. A possible alternative still being discussed is the balloon and stint procedure I mentioned in a previous post. To succeed, it would need to widen the artery without causing the pulmonary valve to leak, or at least leak significantly. A valve that leaked too much would again lead to surgery, perhaps on the same day. A delicate decision, considering the degree of narrowing.
To reinforce the team, our surgeon has recommended two respected Ross procedure experts be consulted. One doctor is from St. Louis and the other Philadelphia, the latter primarily a pediatric surgeon where the Ross procedure is a necessity since the living tissue grows with the child. We're all for more expertise.
What these doctors will also consider, assuming I have surgery, is our surgeon's suggestion for a related preventative procedure. The car analogy, if crude, comes to my mind: "if you're going to replace the timing chain you might was well replace the water pump". In my case, it's a portion of the aortic artery which has widened since surgery. It isn't causing any problems, but could in the future. Like the problem with the pulmonary artery, the widening of the aortic artery is something that happens to many Ross procedure patients. For me, it just happened a lot sooner than most.
We'll sort all this out over the coming weeks. We appreciate your thoughts, prayers, and help. In the meantime, I think it's time for some more autocrossing :-)
Monday, July 13, 2009
While you wait
If your doctor's appointment gets rescheduled after you've been in the waiting room for 45 minutes, it sure helps living in the same state. Patients come to Johns Hopkins from all corners of the planet, and unlike them I'm able to be back to work in the afternoon. I've got a CT scan tomorrow morning and will see my surgeon around lunchtime.
So, while you're waiting for news, consider reading my micro blog (Twitter). You'll even find a list of the license plates we saw in the hospital parking garage. Just visit krahe.org and click on 'Chris'.
So, while you're waiting for news, consider reading my micro blog (Twitter). You'll even find a list of the license plates we saw in the hospital parking garage. Just visit krahe.org and click on 'Chris'.
Friday, July 10, 2009
Percentages
I was talking to my brother this morning and he asked some questions that I hadn't blogged about, so I thought I'd drop in a quick post to summarize some things.
- How I'm feeling doing normal things: about 90%
- My athletic capacity compared to 2 years ago: maybe 5%
- The size of my pulmonary valve/artery now compared to after surgery: roughly 20%
- The percentage of my surgeon's Ross procedure patients that have rejected the donated valve in less than 5 years: less than 1% (uh, that's just me)
- How motivated I am to getting better: 100% !
Fixable
At a conference I attended a few years back, the creator of Fixables.net introduced his site. The concept was simple: people post problems in their neighborhood, like potholes, graffiti, overgrown trees blocking sidewalks, etc. The community helps find who's responsible and works together to get the problem fixed. While this idea hasn't taken off at Fixables.net, it certainly has at other sites. Something fixable, a strong community, problem solved.
That my current heart issue is fixable is a very good thing. Sure, we don't know exactly how yet, and yes, it might mean another surgery not unlike the one back in September. The hangup is that recent tests haven't been able to identify the area of restricted blood flow as either the pulmonary valve or pulmonary artery. Knowing this would give my doctors a better sense of the likelihood of success of a balloon and stint procedure -- a technique that expands the area and keeps it there. If that worked, it would the easiest recovery for me -- about the same as recovering from a day of moving the unsightly pile of topsoil from my driveway to the backyard (we really have to finish that :)
In the meantime, I'm surrounded by a great community of family and friends. We really enjoyed our staycation without having decisions to make about next steps. That Ann Marie and the kids had great ideas and equal motivation for fun sure helped. It's also been wonderful talking to friends who followed my blog last year and who've been reading it since. As much as I'd like to, I don't always have time to catch up with everyone, and when I do I'd much rather talk about the fun stuff they're up to. After all, who starts a community barbeque conversation with "hey, how about them potholes down the street"?
Should be fun weekend with Alli's birthday party and (hopefully) more of this stellar weather we've been having. We'll see my surgeon on Monday and hope to have a plan soon after. Thanks again for following along.
That my current heart issue is fixable is a very good thing. Sure, we don't know exactly how yet, and yes, it might mean another surgery not unlike the one back in September. The hangup is that recent tests haven't been able to identify the area of restricted blood flow as either the pulmonary valve or pulmonary artery. Knowing this would give my doctors a better sense of the likelihood of success of a balloon and stint procedure -- a technique that expands the area and keeps it there. If that worked, it would the easiest recovery for me -- about the same as recovering from a day of moving the unsightly pile of topsoil from my driveway to the backyard (we really have to finish that :)
In the meantime, I'm surrounded by a great community of family and friends. We really enjoyed our staycation without having decisions to make about next steps. That Ann Marie and the kids had great ideas and equal motivation for fun sure helped. It's also been wonderful talking to friends who followed my blog last year and who've been reading it since. As much as I'd like to, I don't always have time to catch up with everyone, and when I do I'd much rather talk about the fun stuff they're up to. After all, who starts a community barbeque conversation with "hey, how about them potholes down the street"?
Should be fun weekend with Alli's birthday party and (hopefully) more of this stellar weather we've been having. We'll see my surgeon on Monday and hope to have a plan soon after. Thanks again for following along.
Monday, June 29, 2009
If you have to cancel a trip, it's nice to have great destinations near home
Great trip to DC today. See some photos.
Friday, June 26, 2009
Well, at least it could mean I have a strong immune system
After months of feeling great and making good progress since my surgery, today we learned the reason why more recently I've been feeling rather winded doing things I've always done. For example, about 10 weeks after surgery I could run a mile before tiring out, but now 300 yards is my limit. Not the direction I was hoping for.
So it turns out my body has rejected the pulmonary valve I received during surgery. It's not that this is completely unexpected, it's just that it happened in less than 1 year where normally it's a gradual process that lasts over 20 years or so. The effect is not enough blood is getting to my lungs.
In every other way, my heart, and the rest of me, is doing great. This includes my aortic valve that was the original problem, and my left ventricle, which returned to a normal size just three weeks after surgery. That's very comforting. This new problem is statistically unlikely, but entirely possible.
My doctors are still analyzing the results of my echo cardiogram today, and will be talking about what comes next. We're turning our vacation into a "staycation", keeping close to home and taking it easy. We'll miss seeing my brothers and their families on that trip, but hope to make it up north another time.
That's it for now. Thanks for following my blog! And thanks to our good friend Lisa who offered to reschedule her chemo treatment, change vacation plans, and fill in for Ann Marie on a girl scout trip -- all so we could see my surgeon :)
So it turns out my body has rejected the pulmonary valve I received during surgery. It's not that this is completely unexpected, it's just that it happened in less than 1 year where normally it's a gradual process that lasts over 20 years or so. The effect is not enough blood is getting to my lungs.
In every other way, my heart, and the rest of me, is doing great. This includes my aortic valve that was the original problem, and my left ventricle, which returned to a normal size just three weeks after surgery. That's very comforting. This new problem is statistically unlikely, but entirely possible.
My doctors are still analyzing the results of my echo cardiogram today, and will be talking about what comes next. We're turning our vacation into a "staycation", keeping close to home and taking it easy. We'll miss seeing my brothers and their families on that trip, but hope to make it up north another time.
That's it for now. Thanks for following my blog! And thanks to our good friend Lisa who offered to reschedule her chemo treatment, change vacation plans, and fill in for Ann Marie on a girl scout trip -- all so we could see my surgeon :)
Thursday, April 30, 2009
So how big is an acre?
Someone smart, when talking about the difference between data and information, once asked the question "how big is an acre?" The official answer is 43,560 square feet. But who remembers that sort of thing? And how useful is that number anyway? Unless you manage/design/build large buildings, do surveys, or love measuring things, the data isn't helpful.
A more useful answer? An acre is about the size of an American football field with the end zones cut off. For many people, that's far easier to understand.
So, today my colleague pointed me to this presentation by Jeffrey Veen, a designer who like Edward Tufte does a great job of helping people understand data through visualizations. Jeff tells a great story about how empowering people with software tools helps them make sense of large sets of data. There's a particular demo near the end that is particularly compelling. It combines four groups of data into one user-controlled visualization, through which you see the devastating effect of AIDS on Botswana.
If you're interested, I do occasionally tag interesting visualization resources like this one (also available as an RSS feed).
A more useful answer? An acre is about the size of an American football field with the end zones cut off. For many people, that's far easier to understand.
So, today my colleague pointed me to this presentation by Jeffrey Veen, a designer who like Edward Tufte does a great job of helping people understand data through visualizations. Jeff tells a great story about how empowering people with software tools helps them make sense of large sets of data. There's a particular demo near the end that is particularly compelling. It combines four groups of data into one user-controlled visualization, through which you see the devastating effect of AIDS on Botswana.
If you're interested, I do occasionally tag interesting visualization resources like this one (also available as an RSS feed).
Sunday, April 19, 2009
White House Tour
You gotta like a friend that takes the better part of his Sunday to show you where he works. And even more so when it's a day our kids (and us) will remember for a lifetime. The pictures, and the stories behind them, are here.
Friday, April 17, 2009
Saint Anthony must know a lot about us
Catholics know that when you really need to find something, like your car keys or that library book that was due last week, you say a quick prayer to Saint Anthony. I don't know how he became the patron saint of lost items, but I do know that he's helped me more than once.
I think I've used Google to find a few things too, what like maybe a million times since last Thursday, but they still haven't found my car keys. Who knows, maybe they're working on that too.
So where Saint Anthony knows what we've lost, Google, and other sites like it, really know what we're looking for. Google Trends is a perfect example. Take a bunch of search data and compare it to industry trends like car sales, home purchases, and such -- and voila, you can, as they say predict the present. Kudos to Google for doing the analysis and sharing the data!
I think I've used Google to find a few things too, what like maybe a million times since last Thursday, but they still haven't found my car keys. Who knows, maybe they're working on that too.
So where Saint Anthony knows what we've lost, Google, and other sites like it, really know what we're looking for. Google Trends is a perfect example. Take a bunch of search data and compare it to industry trends like car sales, home purchases, and such -- and voila, you can, as they say predict the present. Kudos to Google for doing the analysis and sharing the data!
Tuesday, March 17, 2009
Photo Updates
Been posting some photos now and then to my Flickr page, including some recent gymnastics shots. Fun stuff.
Friday, March 13, 2009
NPR Heart Stories
I found these three NPR stories about the human heart rather interesting. Especially the first one, which turns traditional thinking about bypass surgery upside down. This could mean far fewer heart surgeries, which is great news as far as I'm concerned!
Sunday, March 1, 2009
Email subscriptions changing
For those of you subscribe to my blog via email ...
It's time for a little Spring cleaning. I'm switching back to Feedburner for email notifications, dropping the $6 per month Binhost service. Binhost was reliable, flexible, and immediate, but now that surgery is well behind me I'm thinking Feedburner's daily emails will keep most subscribers happy. And besides, the fact that Feedburner is free certainly is nice.
So, if you'd like to continue receiving emails, re-register using the "subscribe" link on my blog. If not, no worries -- and thanks for listening!
It's time for a little Spring cleaning. I'm switching back to Feedburner for email notifications, dropping the $6 per month Binhost service. Binhost was reliable, flexible, and immediate, but now that surgery is well behind me I'm thinking Feedburner's daily emails will keep most subscribers happy. And besides, the fact that Feedburner is free certainly is nice.
So, if you'd like to continue receiving emails, re-register using the "subscribe" link on my blog. If not, no worries -- and thanks for listening!
Tuesday, February 17, 2009
Better, stronger, faster (almost)
It's amazing to me that just under 5 months ago I had heart surgery. I feel great. I can run or bike just about as well as ever. And I've regained all my muscle strength. I'm exercising 4 times a week, and am confident that in time I'll surpass my pre-surgery condition. That rocks! It's a true testament to the wonders of modern surgery and the skills of the Johns Hopkins medical staff.
So, any after effects? Just one -- a medication I'm still on sometime makes me dizzy if I stand up quickly. My cardiologist will determine how long I need to have this prescription. It may be for the long-term to address an arrhythmia I may have, but we'll see.
Oh, and the scar? A few have asked. Let me put it this way, there's no doubt I had surgery, but I think most people would guess it's more than a year ago, rather then months. It really looks good, and after all, as they say, scars are tattoos with better stories!
So, any after effects? Just one -- a medication I'm still on sometime makes me dizzy if I stand up quickly. My cardiologist will determine how long I need to have this prescription. It may be for the long-term to address an arrhythmia I may have, but we'll see.
Oh, and the scar? A few have asked. Let me put it this way, there's no doubt I had surgery, but I think most people would guess it's more than a year ago, rather then months. It really looks good, and after all, as they say, scars are tattoos with better stories!
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