Every morning I check the incision and chest tube sites. The chest tube sites look great - dry, tight, scabby and a good color (ie, not red). The incision is 95% healed, except for a 3/4" section at the bottom of the incision that has been a little slower to heal - it's been a little moist and scabby, whereas the rest of the incision is pretty much a residual scar by now. I've been treating this area daily with peroxide and/or iodine (depending on which bottle is closer) and occasionally covering with gauze, more to protect my clothes than the wound.
Seriously, if you're squeamish, stop reading here.
This morning (or overnight), the scab came loose prematurely and was quite wet. Attached to it, as I discovered when attempting to cleanly clip off the loose dead scab tissue, was a floppy protruding section of subcutaneous suture about 1.5 inches long. It's plastic thread, similar in texture to the gimmick that keeps your Thanksgiving turkey trussed until you get it from the store to your kitchen counter. So I clipped that too.
Now I'm left with a little bit of an opening in the skin where there shouldn't be one. Fortunately over the past 3 weeks the skin layers had healed themselves a good deal and the opening wasn't too bad (ie, I don't think it needs stitches). So, plenty of peroxide on the opening, and a new covering. It's not too red and not too painful, so I don't think it's infected, and I intend to keep it that way. I'll check it regularly and call my doc if it gets worse. Of course, it now being the weekend, if I truly need it stitched it means a non-emergency ER trip.
(Post-entry update: it looks great the next morning, reclosed on its own, clearly no need for stitches or anything interesting.)
Take care,
Michael
Friday, January 29, 2010
Wednesday, January 27, 2010
Trying not to be a bump on a log
Every day is an effort to keep moving, because walking is about the best thing for me right now (and I start cardiac rehab as soon as I can get it scheduled). Plus, I'm bored at home. So we've been out and about, which means I haven't been on the computer much at all. And this blog suffers for it, alas.
So to beat cabin fever, we took a spontaneous trip today to Dublin. Shamrocks, Guinness and the Blarney Stone!
Sadly, no. Dublin, Pennsylvania, home of the nearest state driver's license photo center. For the next 4 years I can excuse my driver's license photo by explaining it was taken not 3 weeks after heart surgery.
It being cold and sometimes rainy here in January, we've been doing most of the walking in malls like this one, this one, and this one, as well as grocery stores/BJ's/Target - anything with lots of aisles, things to look at, and carts to lean on like walkers if needed (which I really haven't). Bonus points if the shopping center has a Barnes & Noble or Borders to take a break at (and so Jenn doesn't come home empty-handed).
The good news is, in all my walking, I haven't hit the wall yet - in fact, Jenn said today she was struggling to keep up. I haven't hit the gym for a "workout" yet, so I'm not ready to definitively term the surgery a success, but I'm very optimistic. I'd like the pain to subside a little more. I'm still taking a whole lot of Advil and Tylenol. My internist, Dr. Schwartz, and my HCM specialist at Brigham and Women's, Dr. Ho, both tell me to quit being a hero and take the Percocet. But that makes me loopy (not to mention "irregular"), and I dislike cognitive impairment just a little more than I dislike pain. Besides, I need something to complain about, else Jenn thinks she gets off easy.
Speaking of Dr. Ho, she gets major props from me here. She had just returned from maternity leave, saw my operative report in her inbox that must have been 2 feet high with papers, and called me personally on my cell phone to check on me and see if there was anything she could do. Wonderful, terrifically attentive (and expert) doctor.
Finally, for those of you in the Philadelphia area, here's a plug for my fellowship's annual choir concert. It's this Sunday, Jan. 31, 2:00 p.m. at the fellowship on Street Road in Warrington. I obviously won't be singing this year, but I'll be there and it should be wonderful. I have 2 tickets free to anyone interested, just contact me. And thanks to Dad for generously donating the printing for the programs.
Take care,
Michael
So to beat cabin fever, we took a spontaneous trip today to Dublin. Shamrocks, Guinness and the Blarney Stone!
Sadly, no. Dublin, Pennsylvania, home of the nearest state driver's license photo center. For the next 4 years I can excuse my driver's license photo by explaining it was taken not 3 weeks after heart surgery.
It being cold and sometimes rainy here in January, we've been doing most of the walking in malls like this one, this one, and this one, as well as grocery stores/BJ's/Target - anything with lots of aisles, things to look at, and carts to lean on like walkers if needed (which I really haven't). Bonus points if the shopping center has a Barnes & Noble or Borders to take a break at (and so Jenn doesn't come home empty-handed).
The good news is, in all my walking, I haven't hit the wall yet - in fact, Jenn said today she was struggling to keep up. I haven't hit the gym for a "workout" yet, so I'm not ready to definitively term the surgery a success, but I'm very optimistic. I'd like the pain to subside a little more. I'm still taking a whole lot of Advil and Tylenol. My internist, Dr. Schwartz, and my HCM specialist at Brigham and Women's, Dr. Ho, both tell me to quit being a hero and take the Percocet. But that makes me loopy (not to mention "irregular"), and I dislike cognitive impairment just a little more than I dislike pain. Besides, I need something to complain about, else Jenn thinks she gets off easy.
Speaking of Dr. Ho, she gets major props from me here. She had just returned from maternity leave, saw my operative report in her inbox that must have been 2 feet high with papers, and called me personally on my cell phone to check on me and see if there was anything she could do. Wonderful, terrifically attentive (and expert) doctor.
Finally, for those of you in the Philadelphia area, here's a plug for my fellowship's annual choir concert. It's this Sunday, Jan. 31, 2:00 p.m. at the fellowship on Street Road in Warrington. I obviously won't be singing this year, but I'll be there and it should be wonderful. I have 2 tickets free to anyone interested, just contact me. And thanks to Dad for generously donating the printing for the programs.
Take care,
Michael
Wednesday, January 20, 2010
David and his new ICD, walking, and caffeine
My message board buddy David had his myectomy at CC with Dr. Smedira last Thursday. The procedure itself went fine, but his recovery has been considerably more rocky than mine. He's still in the hospital, having had an implantable cardioverter/defibrillator (ICD) placed today after some rhythm disturbances, including atrial fibrillation and possibly ventricular tachycardia (very serious). Please keep him in your thoughts. Fortunately, as we know, he's in the best place in the world if he's going to have post-op cardiac complications that need to be monitored and managed. Plus his positive attitude and sense of humor are fully intact.
As an aside, part of the evaluation of HCM at diagnosis is an assessment of the risk factors for sudden death and subsequent recommendation for/against ICD placement. An ICD is basically a battery installed surgically under the chest skin, with wires running into the heart, that activates a defibrillating shock when it detects a potentially lethal heart rhythm. It can be life-saving, but it's not benign. For example, an ICD can misfire, which is painful; the leads (wires) can break or permanently embed themselves into the blood vessels; and it needs to be "interrogated" regularly for evidence of abnormal rhythms and use. The risk factors for sudden death in HCM are prior cardiac arrest or sustained v-tach; family history of sudden cardiac death; syncope (fainting); extreme thickening of the septum (>30 mm); and a decreased BP response to exercise. Of these, I have only one, decreased BP on exercise. Therefore, although every HCM expert I've ever consulted has initiated an informed discussion of ICDs, it has never been definitively recommended to me, and neither I nor my doctors believe it's warranted. For obvious reasons, this is a highly controversial and delicate subject clinically, and there are no right answers (at least in my case).
I've been doing some walking every day, and it's obvious that I will be able to tolerate exercise much better. We went shopping in King of Prussia this afternoon, and wandered all around at a reasonable clip (read: I'm no longer being passed by 65-year-olds), with no fatigue or shortness of breath whatsoever. I've been looking for a similar coffeemaker to the one Jay recommended in an earlier comment, but it isn't stocked in Kitchen Kapers, Crate and Barrel, Bon-Ton, Williams-Sonoma, or anywhere else we checked. (Told you we'd been walking - thank you, Jay, for sending me on a wild goose chase and getting me off the couch). So I ordered it online. Caffeination is imminent. Meantime, the baristas at Starbucks now recognize our Toyota at the top of the drive-through lane.
My first follow-up internist appointment is Friday. I have a laundry list of things to ask him - pain and sleep meds at the top of the list - but all in all, I think everything is progressing incredibly fast and well. Thanks to everyone for all of their support. I've been reading the comments every post-op day since I could log on, and I believe that they are instrumental in helping me recover as fast as I am.
Take care,
Michael
As an aside, part of the evaluation of HCM at diagnosis is an assessment of the risk factors for sudden death and subsequent recommendation for/against ICD placement. An ICD is basically a battery installed surgically under the chest skin, with wires running into the heart, that activates a defibrillating shock when it detects a potentially lethal heart rhythm. It can be life-saving, but it's not benign. For example, an ICD can misfire, which is painful; the leads (wires) can break or permanently embed themselves into the blood vessels; and it needs to be "interrogated" regularly for evidence of abnormal rhythms and use. The risk factors for sudden death in HCM are prior cardiac arrest or sustained v-tach; family history of sudden cardiac death; syncope (fainting); extreme thickening of the septum (>30 mm); and a decreased BP response to exercise. Of these, I have only one, decreased BP on exercise. Therefore, although every HCM expert I've ever consulted has initiated an informed discussion of ICDs, it has never been definitively recommended to me, and neither I nor my doctors believe it's warranted. For obvious reasons, this is a highly controversial and delicate subject clinically, and there are no right answers (at least in my case).
I've been doing some walking every day, and it's obvious that I will be able to tolerate exercise much better. We went shopping in King of Prussia this afternoon, and wandered all around at a reasonable clip (read: I'm no longer being passed by 65-year-olds), with no fatigue or shortness of breath whatsoever. I've been looking for a similar coffeemaker to the one Jay recommended in an earlier comment, but it isn't stocked in Kitchen Kapers, Crate and Barrel, Bon-Ton, Williams-Sonoma, or anywhere else we checked. (Told you we'd been walking - thank you, Jay, for sending me on a wild goose chase and getting me off the couch). So I ordered it online. Caffeination is imminent. Meantime, the baristas at Starbucks now recognize our Toyota at the top of the drive-through lane.
My first follow-up internist appointment is Friday. I have a laundry list of things to ask him - pain and sleep meds at the top of the list - but all in all, I think everything is progressing incredibly fast and well. Thanks to everyone for all of their support. I've been reading the comments every post-op day since I could log on, and I believe that they are instrumental in helping me recover as fast as I am.
Take care,
Michael
Sunday, January 17, 2010
Finding my limits
Yesterday was an active day: lots of errands, and walking (we joined BJ's and walked the entire store learning where everything is). Today, more of the same: brunch with Mom and Dad, then a visit to Fellowship where I just about blew everyone's mind by showing up a mere 10 days after surgery, and then a lunch date with Laurie to share all the gruesome details of the surgery. Laurie, ever observant (having been there, and also because she's a trained PA and paramedic), noticed I was getting more pale as lunch progressed. Fatigue, pure and simple. When I hit the wall, I do it fast. I was asleep in the car within minutes and napped for a good portion of the afternoon.
There's only one way to find your limits. Now I know what mine are (at least this week). Fortunately, there's little on tap for tomorrow except maybe a trip to the grocery store. And lest you think I'm going to be a total slug sprawled out on the couch drooling in the general direction of the TV, I'm keeping mentally sharp by doing crosswords, reading, and hosting online euchre tournaments and supervising and training a staff of tournament directors (I bet many of you didn't know I do that).
Speaking of lunch, the prescribed post-heart-surgery diet for an otherwise healthy person is lots of protein (and low salt). I'm not joking when I tell you that the CC official recommendations include milkshakes, floats and protein smoothies. The call for protein makes sense, as there's a lot of tissue repair going on in the body. So active weight loss is going to wait 6 weeks or so, and our blender is getting more use than it ever has. I have, however, pretty much eliminated empty calories - no baked goods, no refined sugar, very little starch, and my snacks tend to be yogurt or a banana.
The pain is subsiding more every day, giving way to a deep itch that I'm sure Jay is responsible for inducing since he suggested I might be susceptible to it when we spoke on the phone last night. Thanks, pal.
Take care,
Michael
There's only one way to find your limits. Now I know what mine are (at least this week). Fortunately, there's little on tap for tomorrow except maybe a trip to the grocery store. And lest you think I'm going to be a total slug sprawled out on the couch drooling in the general direction of the TV, I'm keeping mentally sharp by doing crosswords, reading, and hosting online euchre tournaments and supervising and training a staff of tournament directors (I bet many of you didn't know I do that).
Speaking of lunch, the prescribed post-heart-surgery diet for an otherwise healthy person is lots of protein (and low salt). I'm not joking when I tell you that the CC official recommendations include milkshakes, floats and protein smoothies. The call for protein makes sense, as there's a lot of tissue repair going on in the body. So active weight loss is going to wait 6 weeks or so, and our blender is getting more use than it ever has. I have, however, pretty much eliminated empty calories - no baked goods, no refined sugar, very little starch, and my snacks tend to be yogurt or a banana.
The pain is subsiding more every day, giving way to a deep itch that I'm sure Jay is responsible for inducing since he suggested I might be susceptible to it when we spoke on the phone last night. Thanks, pal.
Take care,
Michael
Saturday, January 16, 2010
Home sweet home
We flew home yesterday, and man, are my arms tired.
In a comment a while back, Laurie referred to a "bed wedge" as a solution to comfortable sleep. It keeps you propped up on a slight angle, which helps breathing and takes some pressure off the chest. I had one waiting for me at home. It definitely helps, I got about 7 hours of only mildly interrupted sleep last night.
There are a lot of brands and models of wedge pillows out there. If any HCMers are reading this, I definitely recommend this wedge pillow in the 25" x 24" x 12" size. It's super-firm and sufficiently big (for comparison's sake, the sole model at Bed Bath and Beyond when we visited looked as thin as a slice of pizza).
I sneezed yesterday on the plane, the first one I hadn't been able to suppress. Holy throbbing chest wall, Batman. I'll be getting back on the Claritin ASAP as this is one experience I do not wish to repeat for a few months.
The incision looks mostly good except at the bottom, which is a little oozy at the base and the left chest tube site. It's also swollen and a little painful at the top, but they tell me that's normal (it's not hot or "angry"). We're treating the bottom area with iodine and keeping it covered. I'm pretty sure it's not infected, but I'll have the doctor look at it next week for sure.
Today is errand day: pharmacy, optician, and a sexy new coffeemaker (which I promised myself as a gift for making it through). And some walking at some point, the new daily requirement.
Take care,
Michael
In a comment a while back, Laurie referred to a "bed wedge" as a solution to comfortable sleep. It keeps you propped up on a slight angle, which helps breathing and takes some pressure off the chest. I had one waiting for me at home. It definitely helps, I got about 7 hours of only mildly interrupted sleep last night.
There are a lot of brands and models of wedge pillows out there. If any HCMers are reading this, I definitely recommend this wedge pillow in the 25" x 24" x 12" size. It's super-firm and sufficiently big (for comparison's sake, the sole model at Bed Bath and Beyond when we visited looked as thin as a slice of pizza).
I sneezed yesterday on the plane, the first one I hadn't been able to suppress. Holy throbbing chest wall, Batman. I'll be getting back on the Claritin ASAP as this is one experience I do not wish to repeat for a few months.
The incision looks mostly good except at the bottom, which is a little oozy at the base and the left chest tube site. It's also swollen and a little painful at the top, but they tell me that's normal (it's not hot or "angry"). We're treating the bottom area with iodine and keeping it covered. I'm pretty sure it's not infected, but I'll have the doctor look at it next week for sure.
Today is errand day: pharmacy, optician, and a sexy new coffeemaker (which I promised myself as a gift for making it through). And some walking at some point, the new daily requirement.
Take care,
Michael
Wednesday, January 13, 2010
Onward and upward
Welcome to the boring but important parts of recovery.
I'm almost off the Percocet and managing pain with Advil and Tylenol. I feel like I lost a bar fight, but that this type of soreness will eventually dissipate. Sleep is still sporadic.
A couple of milestones yesterday.
(1) Caffeine. I caved and ordered a latte from Starbucks, as a purely scientific trial, mind you (remember, I work in pharmaceutical R&D). And it felt frickin' GREAT. Remember I'd been abstaining from caffeine for more than a year. Yes, I, the guy who owns a $35 Thermos that keeps his coffee hot 'n' fresh all the working day and includes a shoulder strap, coffee made from beans roasted to order and shipped overnight from a boutique in NYC, gave up the joe - it made me feel that bad. Well, success! I got a rush to the frontal lobe (good) but not to the left ventricle (would have been bad). Jenn says she doesn't remember the last time she saw me smile so wide.
(2) Restaurant food. We went to a very nice restaurant, Table 45, for a multi-course meal last night, the type that would have sent my gradient through the roof pre-op. A lot of food (all of it heart-healthy), and no trouble with dizziness or shortness of breath at the dinner table or afterward. A very pleasant change indeed.
I'm looking forward to coming home. The concierge at the Clinic is unbelievable. We provided them our travel itinerary an hour ago. By tomorrow afternoon they will have taken care of - at no charge to us - printing boarding passes, ground transportation to Hopkins Airport (they had also chauffeured us to the Clinic on arrival), and wheelchair service/cart service/luggage assistance at both Hopkins and Newark. They do this for every single out-of-state surgical patient, gratis. Amazing.
Finally, in the spirit of "Pay It Forward," I met with a fellow HCM patient today who is scheduled for a myectomy tomorrow (Thursday) with Dr. Smedira. We got to know each other a little bit online through the HCMA message board. His name is David, he's a great guy, and if you could keep him in your thoughts, I'd appreciate it. I believe his status will be updated here.
Take care,
Michael
I'm almost off the Percocet and managing pain with Advil and Tylenol. I feel like I lost a bar fight, but that this type of soreness will eventually dissipate. Sleep is still sporadic.
A couple of milestones yesterday.
(1) Caffeine. I caved and ordered a latte from Starbucks, as a purely scientific trial, mind you (remember, I work in pharmaceutical R&D). And it felt frickin' GREAT. Remember I'd been abstaining from caffeine for more than a year. Yes, I, the guy who owns a $35 Thermos that keeps his coffee hot 'n' fresh all the working day and includes a shoulder strap, coffee made from beans roasted to order and shipped overnight from a boutique in NYC, gave up the joe - it made me feel that bad. Well, success! I got a rush to the frontal lobe (good) but not to the left ventricle (would have been bad). Jenn says she doesn't remember the last time she saw me smile so wide.
(2) Restaurant food. We went to a very nice restaurant, Table 45, for a multi-course meal last night, the type that would have sent my gradient through the roof pre-op. A lot of food (all of it heart-healthy), and no trouble with dizziness or shortness of breath at the dinner table or afterward. A very pleasant change indeed.
I'm looking forward to coming home. The concierge at the Clinic is unbelievable. We provided them our travel itinerary an hour ago. By tomorrow afternoon they will have taken care of - at no charge to us - printing boarding passes, ground transportation to Hopkins Airport (they had also chauffeured us to the Clinic on arrival), and wheelchair service/cart service/luggage assistance at both Hopkins and Newark. They do this for every single out-of-state surgical patient, gratis. Amazing.
Finally, in the spirit of "Pay It Forward," I met with a fellow HCM patient today who is scheduled for a myectomy tomorrow (Thursday) with Dr. Smedira. We got to know each other a little bit online through the HCMA message board. His name is David, he's a great guy, and if you could keep him in your thoughts, I'd appreciate it. I believe his status will be updated here.
Take care,
Michael
Tuesday, January 12, 2010
Day one without the safety net
It's a little scary when they say you can leave the hospital, knowing that no one will be at the other end of that red call button at the bedside to administer painkillers or manage a fluky heart rhythm at 2:15 a.m.
By the time we completed the discharge, all the outpatient pharmacies at CC were closed for the night (surprising - I would think at least one would have been open 24 hours). We don't have a car here, and I was not about to walk or try and get a cab to the nearest Rite-Aid in the East Cleveland night (and wasn't going to let Jenn leave me). So I asked the nurses for a final lidocaine patch to the chest and vowed to make it through the night on Advil and Tylenol before resorting to the prescribed Percocet in the morning.
Expectedly, finding a comfortable sleeping position was a challenge. Tried the bed, even with a "fort" of 6-7 pillows - no go, gave up at 1:30 a.m. after redosing the Advil and Tylenol. Tried upright on the couch, but the cushions were too firm (reminiscent of airplane seats) and hurt my butt. Finally laid out on the couch with many pillows and sacked out until 5:30, when I woke in pain crisis. Redosed again and made Jenn promise to set an alarm and be at the CC pharmacy upon opening at 8 a.m. She has really been an angel through this so far. (And it's hard to be a caregiver. I remember all too well her battles with radiation therapy in 2004. She's blogging her experience as well, and I'm sure she'd love your support.)
Then I had my first really good, thorough sleep: 4 more hours completely unconscious, with vivid dreams. Jenn's entering the room woke me and precipitated another pain crisis, but finally we had the tools to deal with it. Ate some crackers, Gatorade and a banana for breakfast, relaxed and read, and then cleaned up around 11:30.
We're off to the hospital to thank the nurses on J5-1 and check out the rooftop pavilion that everyone raves about but that we didn't get to catch. Also going to see if I can squirrel up a chair massage.
Take care,
Micahel
By the time we completed the discharge, all the outpatient pharmacies at CC were closed for the night (surprising - I would think at least one would have been open 24 hours). We don't have a car here, and I was not about to walk or try and get a cab to the nearest Rite-Aid in the East Cleveland night (and wasn't going to let Jenn leave me). So I asked the nurses for a final lidocaine patch to the chest and vowed to make it through the night on Advil and Tylenol before resorting to the prescribed Percocet in the morning.
Expectedly, finding a comfortable sleeping position was a challenge. Tried the bed, even with a "fort" of 6-7 pillows - no go, gave up at 1:30 a.m. after redosing the Advil and Tylenol. Tried upright on the couch, but the cushions were too firm (reminiscent of airplane seats) and hurt my butt. Finally laid out on the couch with many pillows and sacked out until 5:30, when I woke in pain crisis. Redosed again and made Jenn promise to set an alarm and be at the CC pharmacy upon opening at 8 a.m. She has really been an angel through this so far. (And it's hard to be a caregiver. I remember all too well her battles with radiation therapy in 2004. She's blogging her experience as well, and I'm sure she'd love your support.)
Then I had my first really good, thorough sleep: 4 more hours completely unconscious, with vivid dreams. Jenn's entering the room woke me and precipitated another pain crisis, but finally we had the tools to deal with it. Ate some crackers, Gatorade and a banana for breakfast, relaxed and read, and then cleaned up around 11:30.
We're off to the hospital to thank the nurses on J5-1 and check out the rooftop pavilion that everyone raves about but that we didn't get to catch. Also going to see if I can squirrel up a chair massage.
Take care,
Micahel
Monday, January 11, 2010
Things move fast
I'm doing so well that they're discharging me tonight. Yeah!!!!!!
Jenn is semi-frantically packing for me ahead of schedule, as I have no shoes or outdoor pants here in the hospital. I'm sure there will be a pharmacy visit in store for us tonight as well as extensive discharge instructions. Plus we'll need dinner. I'll post more tomorrow.
Take care,
Michael
Jenn is semi-frantically packing for me ahead of schedule, as I have no shoes or outdoor pants here in the hospital. I'm sure there will be a pharmacy visit in store for us tonight as well as extensive discharge instructions. Plus we'll need dinner. I'll post more tomorrow.
Take care,
Michael
Caption contest
In line at the one food prep kitchen at Cleveland Clinic that gets your order correct the first time:
Yes, there is really a McDonald's within the Cleveland Clinic (that's the entrance to the "official" hospital cafeteria behind me). The story I heard was that the Clinic's breach of contract penalty for kicking out McD's would have been $4 million, so the hospital decided to swallow it. (Ha!)
No, I didn't actually order anything, silly. No PhotoShop, either.
Submit your caption in the comments section. Winner as determined by Jenn and me gets a genuine Cleveland Clinic respiratory device, official Cleveland Clinic latex gloves as used on unit J5-1, and 2 packages (single serving) of Nabisco Original Graham Crackers.
Yes, there is really a McDonald's within the Cleveland Clinic (that's the entrance to the "official" hospital cafeteria behind me). The story I heard was that the Clinic's breach of contract penalty for kicking out McD's would have been $4 million, so the hospital decided to swallow it. (Ha!)
No, I didn't actually order anything, silly. No PhotoShop, either.
Submit your caption in the comments section. Winner as determined by Jenn and me gets a genuine Cleveland Clinic respiratory device, official Cleveland Clinic latex gloves as used on unit J5-1, and 2 packages (single serving) of Nabisco Original Graham Crackers.
Update: getting close to discharge
Generally, things are going going great, especially for just 4 days post-op. I'm doing a ton of walking (including off the assigned floor and to different, interesting bits of the hospital, with doctors' OK). Here's the bullet point update.
One man deserves props for visiting Jenn and me twice, offering his support in any way imaginable. His name is Michael Manos, and he leads the Pediatric Behavioral Health department at the Cleveland Clinic Children's Hospital (he's a child psychologist). I've known him for years through work. He is a genuinely wonderful man (as well as a fellow Northwestern Wildcat with a history of pranks), and he deserves a plug here.
Finally, I got pneumococcal and H1N1 vaccines. Step right up to the head of the line, young man!
Take care,
Michael
- Pain: Frequent and bothersome, but not agonizing. It's mostly controlled with a prescription anti-inflammatory (Toradol; I'm off the narcotics and Percocet, and should be for good). The last 2 hours before the dosing window reopens are predictably bad. Unlike Laurie, the spot that gets me is the top of the incision, whereas my chest tube sites and extraction were a piece of cake, pain-wise. They had me hooked up to a "Q-ball", a continous infusion of lidocaine wired into the chest tube sites, to ease pain, and it really did wonders.
- Rhythms: Much better today with improved monitoring of electrolytes and potassium and magnesium supplementation, and an appropriate dosage of beta-blocker. The beta-blocker will be weaned when the time comes - but now isn't it. I haven't had PVCs since before 9:00 last evening. They were really bothering me because they were so frequent.
- Fatigue: Comes and goes. I'm not sleeping well at all, thanks to gas pains, unfamiliar environment, and frequent visits from nurses who would like nothing more than 2 tubes of A-positive and a BP measurement at 4:00 a.m. This is not unexpected and should resolve when we get home and I can figure out a way to sleep in peace.
- Heart function: An echocardiogram this morning estimated a resting gradient of 21-22, going up to 28-29 with administration of amyl nitrate. This is a terrific improvement over pre-op.
- Food: Still hit-or-miss on the orders. If medication management were handled this way, no one would survive. Naturally this morning's omission was the banana (think potassium!) to go with my oatmeal. Jenn gave up and squirreled away 2 from the hospital cafeteria for me. And yes, the food is bland - I'm OK with that, I'd expected absolutely no salt whatsoever - but I get graham crackers with just about everything. And graham crackers make everything better.
- Pump-head: going away fast, thank goodness. Wooziness and unable to concentrate has generally correlated with electrolyte or rhythm problems, and go away with supplements. Walking helps too. I still haven't received all the surgical details (such as total pump time), but it may be moot. I'm going to keep trying, if only because I'm curious.
- Discharge: almost certainly will be tomorrow (Tuesday). We're staying here through the week, and will take advantage of an offered repeat consultation at the CC outpatient clinic on Thursday. We won't be at Brigham again until March, so this will get us going with recovery plans.
One man deserves props for visiting Jenn and me twice, offering his support in any way imaginable. His name is Michael Manos, and he leads the Pediatric Behavioral Health department at the Cleveland Clinic Children's Hospital (he's a child psychologist). I've known him for years through work. He is a genuinely wonderful man (as well as a fellow Northwestern Wildcat with a history of pranks), and he deserves a plug here.
Finally, I got pneumococcal and H1N1 vaccines. Step right up to the head of the line, young man!
Take care,
Michael
You know you're making progress when ...
I could post anything here ... about walking, pain control, anticipated discharge (looking like Tuesday). But the #1 sign to me that I'm getting better ...
I get to shave today and take an honest-to-goodness shower. They took off the bandage from the central line and since I'm not on blood thinners I can have at my neck with a razor, and since the pacemaker wires are out I can shower instead of do the washcloth thing. I might look like a normal person real soon!
Take care,
Michael
I get to shave today and take an honest-to-goodness shower. They took off the bandage from the central line and since I'm not on blood thinners I can have at my neck with a razor, and since the pacemaker wires are out I can shower instead of do the washcloth thing. I might look like a normal person real soon!
Take care,
Michael
Sunday, January 10, 2010
Missing in action
Not to rag on the CC too much b/c generally everything has gone well ... but we're noticing a few issues. One serious the other funny.
The one that really bugs is that cardiology didn't really clue-in to the doses of meds he was on pre-op and have a really sound plan for post-op, particularly since several of these meds can NOT be stopped cold turkey (e.g. beta blockers, esp. super doses like M's). And so he's had all kinds of issues that perhaps were preventable or at least better able to be managed before causing problems. So that's a real "grrrrrrr".
The less serious, funnier, but still frustrating one is that food services has a whacked sense of appropriate meals and a real forgetful streak. First, they've got him on what they call a 'modified diabetic diet' because possibly of his immediate post-op sugar levels. But he's not, and they're normal now. And since when are pears and peaches in heavy syrup 'diabetic' - ok ?? Or tonight's dinner -- chicken with stuffing AND mashed potatoes. Or a breakfast of french toast, with sugar-free maple syrup, but apple juice and more fruit cup in syrup. Huh??
And they keep forgetting something off his order at every meal. EVERY meal. His first lunch they forgot the key protein and it took an hour to get him the ordered turkey sandwich (ok, he didn't wind up eating it, but hey! Principle!!), but they remembered the condiments -- what did they think he was going to do with the mustard and mayo and his chicken noodle soup? They forgot his treat, and first bit of calcium, a lime sherbet, for lunch. Again, another call to the nurse and a round-up. Tonight it was the beef broth missing and a roll, but they remembered the margarine. Also, why is a heart hospital using margarine??!! Hello, someone call the trans-fat police please!
We'll have to keep a running total and blog update on what goes missing at all meals from here on.
Time for more walks.
Peace
Jenn
The one that really bugs is that cardiology didn't really clue-in to the doses of meds he was on pre-op and have a really sound plan for post-op, particularly since several of these meds can NOT be stopped cold turkey (e.g. beta blockers, esp. super doses like M's). And so he's had all kinds of issues that perhaps were preventable or at least better able to be managed before causing problems. So that's a real "grrrrrrr".
The less serious, funnier, but still frustrating one is that food services has a whacked sense of appropriate meals and a real forgetful streak. First, they've got him on what they call a 'modified diabetic diet' because possibly of his immediate post-op sugar levels. But he's not, and they're normal now. And since when are pears and peaches in heavy syrup 'diabetic' - ok ?? Or tonight's dinner -- chicken with stuffing AND mashed potatoes. Or a breakfast of french toast, with sugar-free maple syrup, but apple juice and more fruit cup in syrup. Huh??
And they keep forgetting something off his order at every meal. EVERY meal. His first lunch they forgot the key protein and it took an hour to get him the ordered turkey sandwich (ok, he didn't wind up eating it, but hey! Principle!!), but they remembered the condiments -- what did they think he was going to do with the mustard and mayo and his chicken noodle soup? They forgot his treat, and first bit of calcium, a lime sherbet, for lunch. Again, another call to the nurse and a round-up. Tonight it was the beef broth missing and a roll, but they remembered the margarine. Also, why is a heart hospital using margarine??!! Hello, someone call the trans-fat police please!
We'll have to keep a running total and blog update on what goes missing at all meals from here on.
Time for more walks.
Peace
Jenn
Sunday morning progress
Taking steps, literally.
He got decent sleep from 11 until about 4 when they woke him for pain meds. He probably needed all those pain meds from the trauma that was the Eagles playoff debacle Sat. night (which we watched together). ;-)
Typical hospital stuff -- just when you finally fall asleep, someone comes to measure something, take something or give you something. [I'd post a classic Sesame Street clip from YouTube on this, but CC blocks it!]
He had some concerns about atypical rhythms from late last night and into this morning, so the nurses watched him and he called in a cardiologist this morning. They're tweaking his beta blockers again, going a bit higher and closer to where he was. He's been "throwing" (Catch!) PVCs (premature ventricular contractions) all night and all morning and they're monitoring, but not worried.They can be very common. And it's apparently somewhat expected after surgery. Plus could be an electrolyte imbalance. Guess that means Gatorade - STAT! :-D
He sat in a chair for hours, had breakfast, is walking around some, and is untethered pretty much now. No more oxygen. He even walked out with me to the sitting area to say good-bye to my parents and do the one-arm air-hug of the recovering heart patient. We'll go walksies more later.
Got fresh gown and a sponge bath. [ hey! no naughty-nurse jokes necessary here -- I was one doing the up-close-and-personal thing this morning. Feel free to make jokes however about me!]. We've surfed the bad Sunday TV and now he's resting because they did some more work. Took out the sutures from his chest tube sites, took out his pacing wires to the heart left over from surgery (thin little orange things looking like dental floss). So he has to rest in bed for 30m minimum. After his active morning that's a 'scrip' he can follow easily. And in a little bit they'll take out the central line at his neck and just use a new IV in his arm for meds, blood, or whatever. Pretty much all his drugs are orally now though. He's been instructed not to leave his recovery room floor here for at least 4 hours so I am told to body block anyone who comes to take him away for any tests. Hooo Hah!
Peace
Jenn
He got decent sleep from 11 until about 4 when they woke him for pain meds. He probably needed all those pain meds from the trauma that was the Eagles playoff debacle Sat. night (which we watched together). ;-)
Typical hospital stuff -- just when you finally fall asleep, someone comes to measure something, take something or give you something. [I'd post a classic Sesame Street clip from YouTube on this, but CC blocks it!]
He had some concerns about atypical rhythms from late last night and into this morning, so the nurses watched him and he called in a cardiologist this morning. They're tweaking his beta blockers again, going a bit higher and closer to where he was. He's been "throwing" (Catch!) PVCs (premature ventricular contractions) all night and all morning and they're monitoring, but not worried.They can be very common. And it's apparently somewhat expected after surgery. Plus could be an electrolyte imbalance. Guess that means Gatorade - STAT! :-D
He sat in a chair for hours, had breakfast, is walking around some, and is untethered pretty much now. No more oxygen. He even walked out with me to the sitting area to say good-bye to my parents and do the one-arm air-hug of the recovering heart patient. We'll go walksies more later.
Got fresh gown and a sponge bath. [ hey! no naughty-nurse jokes necessary here -- I was one doing the up-close-and-personal thing this morning. Feel free to make jokes however about me!]. We've surfed the bad Sunday TV and now he's resting because they did some more work. Took out the sutures from his chest tube sites, took out his pacing wires to the heart left over from surgery (thin little orange things looking like dental floss). So he has to rest in bed for 30m minimum. After his active morning that's a 'scrip' he can follow easily. And in a little bit they'll take out the central line at his neck and just use a new IV in his arm for meds, blood, or whatever. Pretty much all his drugs are orally now though. He's been instructed not to leave his recovery room floor here for at least 4 hours so I am told to body block anyone who comes to take him away for any tests. Hooo Hah!
Peace
Jenn
We're "cutting" edge
Not too surprising since we're at this mega healthcare institute and campus that all the signs keep touting as being "one of the 4 best hospitals in US according to US News & Report". And we've already talked about how his doc and surgeon caught some things and did things differently because of their experience that we doubt would've happened elsewhere.
But it was still interesting that the day before his surgery (and I actually saw the article the day OF, while doing the Sit & Wait Championships) there was an article about a report on a study using new anti-bac techniques to minimize infections, including having the patient bathe in anti-bac wash and squirting this stuff up their noses to help prevent MRSA (staph). Well, Michael did all this on the last day pre-surgery! He had the wash they mention and I had to go out to get him the ointment to snort up - just like in the study. Cool stuff!
Peace
Jenn
But it was still interesting that the day before his surgery (and I actually saw the article the day OF, while doing the Sit & Wait Championships) there was an article about a report on a study using new anti-bac techniques to minimize infections, including having the patient bathe in anti-bac wash and squirting this stuff up their noses to help prevent MRSA (staph). Well, Michael did all this on the last day pre-surgery! He had the wash they mention and I had to go out to get him the ointment to snort up - just like in the study. Cool stuff!
Peace
Jenn
Saturday, January 9, 2010
Words cannot describe ...
... the level of gratitude I feel toward all of you for your support of Jenn and me. Your comments warm my (newly fixed) heart.
I don't have the concentration for a long post right now ("pump head" and beta blocker withdrawal symptoms), but as you can see, progress is steady and pretty quick. I'll go into more details later, I promise.
Love you all!
Michael
I don't have the concentration for a long post right now ("pump head" and beta blocker withdrawal symptoms), but as you can see, progress is steady and pretty quick. I'll go into more details later, I promise.
Love you all!
Michael
And we're walking, we're walking ...
Apologies to the movie "Dave" if I butchered any part of the line from the tour guide scene ...
But we're off and walking, he's done a few short laps in the hall outside the room and is now sitting in the waiting area where the parental units have been stashed. Whoo hooo!! Progress is baby steps ... even if you're 35.
But we're off and walking, he's done a few short laps in the hall outside the room and is now sitting in the waiting area where the parental units have been stashed. Whoo hooo!! Progress is baby steps ... even if you're 35.
It isn't a La-Z-Boy, but hey
Saturday has been first full day in step-down. Such a change from ICU where you're monitored constantly and much more poking, beeping, pumping, and general mayhem. Naturally. That's why it's intensive care. But is much quieter here and roomier. And heck, M has a nicer, big flat crystal clear TV than any of us have in our TV rooms. So the NFL NFC Wildcard watching party for the Eagles will be in his room tonite ... hope the Eagles win handily so M's blood pressure doesn't spike. Shoot, we all know it's more likely to be MY pressure that hits the roof when watching dang Iggles.
M spent the morning in a chair in his room .. out of bed. It wasn't the spiffy comfy chair from ICU, but it wasn't the bed. I don't think he really intended or wanted to be out of bed sitting in the chair as long as he was (6:45 am until after lunch, so about 5 hours). He's resting and drifting now, watching or listening to college b-ball games. [Guess the meds still have him out of it --
I can't get him to watch this much b-ball at home!! ;-) ]
Morning was a bit rough because of the activity related to sitting and eating and such. But more because his meds weren't adjusted right. First real mess-up from the CC -- they didn't catch that b/c he was on such high high doses of beta-blockers pre-surgery that taking him to nearly nada post would cause withdrawal and problems, like palpitations, dizziness, etc. They're adjusting the meds, he's back on some blockers. Feeling better.
OH .. wait ... have to come back to this .. he's feeling so much better he's up, and we're going on our first walk!!!
M spent the morning in a chair in his room .. out of bed. It wasn't the spiffy comfy chair from ICU, but it wasn't the bed. I don't think he really intended or wanted to be out of bed sitting in the chair as long as he was (6:45 am until after lunch, so about 5 hours). He's resting and drifting now, watching or listening to college b-ball games. [Guess the meds still have him out of it --
I can't get him to watch this much b-ball at home!! ;-) ]
Morning was a bit rough because of the activity related to sitting and eating and such. But more because his meds weren't adjusted right. First real mess-up from the CC -- they didn't catch that b/c he was on such high high doses of beta-blockers pre-surgery that taking him to nearly nada post would cause withdrawal and problems, like palpitations, dizziness, etc. They're adjusting the meds, he's back on some blockers. Feeling better.
OH .. wait ... have to come back to this .. he's feeling so much better he's up, and we're going on our first walk!!!
Friday, January 8, 2010
Post-op Day 1 recap
Sorry this update didn't come sooner, it's been a bit more hectic and less sitting & waiting.
He had a rough night in the ICU, somewhat to be expected the day of heart surgery and all. Made a bit worse than it should've been by a less than 100% attentive nurse and a generally lousy sleep pattern. BUT, he finally had some good indications in the morning that meant ice chips, water and melted popsicle-slushees were all good to go. And by the time I got to ICU he was sitting in a big chair and out of bed, had his chest tubes removed and was getting the ok to be moved to step-down later in the day. YAY!
Granted, moving to the chair was the equivalent of running the NY marathon and a herculean effort he said, but he did it and stayed upright until time to move to step-down. Many thanks to his nurse David who took such good care of him after the long night and got him in better shape this morning.
He moved to step-down around noon. I moved the family members upstairs to a closer waiting area to his room and away from their near fiefdom in the surgical waiting area. They managed to commandeer a large round table and many chairs yesterday and took turns holding the fort from invaders for more than 12 hours. The land had been retaken by others this morning, but at some point when I came back down from ICU they must have staged a coup because they had it back again and held their ground until after lunch when I relocated them. Impressive -- very.
Michael has been diligent with his breathing exercises. The gizmo they gave him in ICU that he has now is better than the one we saw in the patient ed videos. This one was at least the 2nd runner-up in a design contest. In step-down he now also has the infamous heart-patient-heart pillow. For coughing and hugging and breathing. It's literally red and heart-shaped (ok .. no ..not anatomically heart shaped - valentine shaped -- I can just hear some of you correcting that as I type!).
We've had some short in/out visits with family today now that he has nifty private digs now. First order of business was M sending me back to hotel to bring his iPod and his new iPod speaker dock with remote. Music now. STAT!!
He's rested, been monitored, less poking and prodding, and even ate! Broth and jello, but hey!
Thanks for all the well wishes. Keep reading and leaving comments - he's gonna get his laptop back soon. And he's asked me to compile notes from people. He loves when I pass along all the great notes and folks who've left a note. Thank you all!
Peace
Jenn
He had a rough night in the ICU, somewhat to be expected the day of heart surgery and all. Made a bit worse than it should've been by a less than 100% attentive nurse and a generally lousy sleep pattern. BUT, he finally had some good indications in the morning that meant ice chips, water and melted popsicle-slushees were all good to go. And by the time I got to ICU he was sitting in a big chair and out of bed, had his chest tubes removed and was getting the ok to be moved to step-down later in the day. YAY!
Granted, moving to the chair was the equivalent of running the NY marathon and a herculean effort he said, but he did it and stayed upright until time to move to step-down. Many thanks to his nurse David who took such good care of him after the long night and got him in better shape this morning.
He moved to step-down around noon. I moved the family members upstairs to a closer waiting area to his room and away from their near fiefdom in the surgical waiting area. They managed to commandeer a large round table and many chairs yesterday and took turns holding the fort from invaders for more than 12 hours. The land had been retaken by others this morning, but at some point when I came back down from ICU they must have staged a coup because they had it back again and held their ground until after lunch when I relocated them. Impressive -- very.
Michael has been diligent with his breathing exercises. The gizmo they gave him in ICU that he has now is better than the one we saw in the patient ed videos. This one was at least the 2nd runner-up in a design contest. In step-down he now also has the infamous heart-patient-heart pillow. For coughing and hugging and breathing. It's literally red and heart-shaped (ok .. no ..not anatomically heart shaped - valentine shaped -- I can just hear some of you correcting that as I type!).
We've had some short in/out visits with family today now that he has nifty private digs now. First order of business was M sending me back to hotel to bring his iPod and his new iPod speaker dock with remote. Music now. STAT!!
He's rested, been monitored, less poking and prodding, and even ate! Broth and jello, but hey!
Thanks for all the well wishes. Keep reading and leaving comments - he's gonna get his laptop back soon. And he's asked me to compile notes from people. He loves when I pass along all the great notes and folks who've left a note. Thank you all!
Peace
Jenn
Sitting is good
I checked on M multiple times after I left ICU @ 6. He did pretty well - even watched some football. Only concerns were lack of bowel sounds (Hey! YOU all want info, I deliver). Lack = no ice or water orally.
This am's call sais he was sitting up, more TV, had some B sounds so he got ice. And told nurse on phone to me to tell me "get my ass over there". So I'm off!!! Will post when I can. Stupid lousy cell reception.
Peace
Jenn
Sent via BlackBerry from T-Mobile
Thursday, January 7, 2010
Probably last update for today
So very very tired. I don't possibly know why. ;-)
All was good when I left him in ICU at 6pm. Went for food and company and "adult beverages". Several.
All still good when I called to check in at 9:45. He's resting ok. He's had some coughing. Some nausea. Few other things. So he's not had any water sips or ice chips. They're swabbing his mouth and lips. They're going to keep trying on the water tonight. Should still be ok by tomorrow. It's all playing be ear.
Nurse said he was nodding off & on, and watching some of "The Game" (BCS - Texas v Bama -- or as I told Michael before he got his glasses back and got over the blurries from anesthesia -- the white blobs running one way vs the red spots going the other way). And watching his meditation channel. The fact that he's watching any non-Northwestern football tells me just how out of it he really is.
thank you thank you to all who have posted, read, lurked, sent messages, emails and texts. or just had a passing thought for him or us at any point in time. all the love and warmth has been felt and relayed to him as well. it means so very much. Keep it up and I'll keep updating him and he can read as he gets back around and his laptop back sometime in next few days.
19 hours and I'm done all -- Peace out
Jenn
All was good when I left him in ICU at 6pm. Went for food and company and "adult beverages". Several.
All still good when I called to check in at 9:45. He's resting ok. He's had some coughing. Some nausea. Few other things. So he's not had any water sips or ice chips. They're swabbing his mouth and lips. They're going to keep trying on the water tonight. Should still be ok by tomorrow. It's all playing be ear.
Nurse said he was nodding off & on, and watching some of "The Game" (BCS - Texas v Bama -- or as I told Michael before he got his glasses back and got over the blurries from anesthesia -- the white blobs running one way vs the red spots going the other way). And watching his meditation channel. The fact that he's watching any non-Northwestern football tells me just how out of it he really is.
thank you thank you to all who have posted, read, lurked, sent messages, emails and texts. or just had a passing thought for him or us at any point in time. all the love and warmth has been felt and relayed to him as well. it means so very much. Keep it up and I'll keep updating him and he can read as he gets back around and his laptop back sometime in next few days.
19 hours and I'm done all -- Peace out
Jenn
End of longest day
Michael has nudged me out of ICU. Time for him to sleep. Me too soon. Adrenaline for me all used up.
His numbers look pretty good. Haven't seen his BP this low in long time. Some other diastolic #s they're hoping to get up some more, pushing more fluids. His pain level is dwn to 2 on his 1-10 scale.
Peace
Jenn
Sent via BlackBerry from T-Mobile
Saw him in ICU
Saw Michael finally about 3pm briefly. Doing ok. He'd already been taken off the breathing tube & was talking. Good stuff. He was in pretty good deal of pain & they started his pain pump while I was there. Hope it helps. Poor guy!!! All he wanted was for me to keep rubbing his head.
He was happy about surgery results when I told him. Hasn't yet asked for coffee with his dilaudid but probably will tomorrow. ;-)
I'll take his folks up next. We had to wait for nusing shift change. Maybe meds helping by now.
Peace
J
Sent via BlackBerry from T-Mobile
Still waiting
Went to check in with ICU for 1st visit. Still not ready yet. Said check back in 30 min. So I wait some more.
The waiting part is harder now I think than earlier. Huh. Or maybe its cuz I've been up since 4, all caffeine no longer working or working too well & I'm antsy.
Peace
Jenn
Sent via BlackBerry from T-Mobile
Sorry for few updates -- blame the surgeon
I know you were all hoping for fresher info and more real time blogging. Oops. Sorry.
The good news is that Jen and all distracted me really well until nearly 9am and the first update. And then the nurse doing the completely mostly redundant and CYA presentation (mandatory -- ugh) on what to expect when expecting a patient in ICU distracted me further -- but most distracting was needing a pit stop badly and being stuck in that damn presentation. And then there was waiting and waiting. And no news.
Finally bugged the coordinator to get me news from surgeon around noon -- talked to him and you have the results of that talk in the prior brief post. I'll try to get more info and post later, especially after I get to ICU the first time.
Peace
Jenn
The good news is that Jen and all distracted me really well until nearly 9am and the first update. And then the nurse doing the completely mostly redundant and CYA presentation (mandatory -- ugh) on what to expect when expecting a patient in ICU distracted me further -- but most distracting was needing a pit stop badly and being stuck in that damn presentation. And then there was waiting and waiting. And no news.
Finally bugged the coordinator to get me news from surgeon around noon -- talked to him and you have the results of that talk in the prior brief post. I'll try to get more info and post later, especially after I get to ICU the first time.
Peace
Jenn
Done!! All's well
Talked to surgeon - he was happy how all went. Took good portion of the enlarged septum (middle wall). Also did some tweaking to mitral valve area but valve is good. May have been part of papillary muscle reorientation. Goal was to get gradient as low as possible (the thing that makes him feel awful). Got it from highs of around 160 now to 13!!!!!! YAY!
More later. Will see in ICU ~ 1-2 hrs.
Peace
Jenn
Sent via BlackBerry from T-Mobile
Update #1 -- Major part underway
Just got my first page from the CC update alert pager system ... the blinking buzzing pager that tells you your table is ready. ;-)
No, really -- it was to alert me that as of 9am the "major portion of the surgery is underway". They've done the prepping and apparently probably done the opening and cracking. And so I assume the real work of Dr Smedira the surgery guru to cut and sculpt is underway.
Thanks for all your best wishes.
Peace
Jenn
No, really -- it was to alert me that as of 9am the "major portion of the surgery is underway". They've done the prepping and apparently probably done the opening and cracking. And so I assume the real work of Dr Smedira the surgery guru to cut and sculpt is underway.
Thanks for all your best wishes.
Peace
Jenn
Aaaand we're off!!
The Sitting & Waiting Championships have begun!!
They've taken Michael up for surgery prep & booted me out. Surgery itself likely to start approx 1hr or so - 7am hour sometime I think. More info will come as I know it.
Commence the good thoughts, karma, mantras or whatever you believe. And we feel your hugs here already.
Peace
Jenn
Wednesday, January 6, 2010
One more thing
See my September 2009 postings for the FAQ about hypertrophic cardiomyopathy and the myectomy procedure.
Also, for a treasure trove of information on HCM, go to the Hypertrophic Cardiomyopathy Association (HCMA) website. Better yet, become a member and support this terrific organization dedicated to providing accurate information to HCMers and their families.
Also, for a treasure trove of information on HCM, go to the Hypertrophic Cardiomyopathy Association (HCMA) website. Better yet, become a member and support this terrific organization dedicated to providing accurate information to HCMers and their families.
And away we go
Final appointments were today: anesthesiology, clinical research (they want my excised heart tissue to study, as well as to enter me in a randomized study of the merits of fresher-than-standard blood should I need a transfusion; I said yes to both), pre-op nurse, and the surgeon, Dr. Smedira. For Dr. Smedira, this will be a simple and relatively unchallenging procedure given his expertise and my age and general condition.
Ultimately the day yielded no real news to speak of, just a lot of tedious instructions.
Thanks to everyone who has voiced their support via comments or e-mail, and to the lurkers who haven't but who are with me spiritually. It means the world to me.
Jenn will take over status updates for the next few days. See you on the other side!
Take care,
Michael
Ultimately the day yielded no real news to speak of, just a lot of tedious instructions.
Thanks to everyone who has voiced their support via comments or e-mail, and to the lurkers who haven't but who are with me spiritually. It means the world to me.
Jenn will take over status updates for the next few days. See you on the other side!
Take care,
Michael
Gettin' religion
When I woke up this morning, I had strange markings on my feet:
Jenn and I have 2 competing theories on this.
Hers: A nurse marked them yesterday for some clinical use (a road map for finding pedal pulses, perhaps)
Mine: Stigmata. I am the chosen one. Expect to hear from me about how you and everyone else should live their lives.
(Kidding, folks.)
Jenn and I have 2 competing theories on this.
Hers: A nurse marked them yesterday for some clinical use (a road map for finding pedal pulses, perhaps)
Mine: Stigmata. I am the chosen one. Expect to hear from me about how you and everyone else should live their lives.
(Kidding, folks.)
Tuesday, January 5, 2010
Cath update
Fortunately, there's not much to add to Jenn's posting, as all went well (ie, no surprises). My coronary arteries are "pristine."
The first person to thread a tube into an artery (his own brachial, as it turns out ... the femoral artery in the groin is generally the preferred approach today), snake it up to the heart, and snap an X-ray was a physician by the name of Werner Forsmann, sometime in the first half of the 20th century. Crazy SOB, if you ask me. Flash forward to 2010, and this procedure is on par, experience-wise, with a trip to the dentist. This was cath #2 for me, lifetime, and I can safely say they're not worth sweating over. (You can't anyway - the cath lab is typically kept around 60 degrees.)
In addition to the arterial assessment, the cardiologists take some other measurements, and again there were no surprises here. My heart muscle overall is quite stiff, which is common in HCM. The resting gradient was 30, in line with what we've seen before on echo (remember folks - normal is zero). It spiked to 120-200 after he generated a premature ventricular contraction (a PVC, like a skipped heartbeat) by "tickling" the inside of the ventricle. This is called the Brockenbrough-Braunwald-Morrow sign, and it's just really cool how they do this: they place a catheter with 2 lumens, one in the left ventricle and one in the ascending aorta; force a PVC; and take pressure tracings. Differences in pressure after the PVC = gradient = obstructive HCM. It's what confirmed the HCM diagnosis in October 2008, and I made the cardiologist do it again today just to be sure.
Tomorrow is the last set of pre-op appointments, but no procedures or tests that I'm aware of. Both sets of parents arrive in Cleveland tomorrow afternoon.
Take care,
Michael
The first person to thread a tube into an artery (his own brachial, as it turns out ... the femoral artery in the groin is generally the preferred approach today), snake it up to the heart, and snap an X-ray was a physician by the name of Werner Forsmann, sometime in the first half of the 20th century. Crazy SOB, if you ask me. Flash forward to 2010, and this procedure is on par, experience-wise, with a trip to the dentist. This was cath #2 for me, lifetime, and I can safely say they're not worth sweating over. (You can't anyway - the cath lab is typically kept around 60 degrees.)
In addition to the arterial assessment, the cardiologists take some other measurements, and again there were no surprises here. My heart muscle overall is quite stiff, which is common in HCM. The resting gradient was 30, in line with what we've seen before on echo (remember folks - normal is zero). It spiked to 120-200 after he generated a premature ventricular contraction (a PVC, like a skipped heartbeat) by "tickling" the inside of the ventricle. This is called the Brockenbrough-Braunwald-Morrow sign, and it's just really cool how they do this: they place a catheter with 2 lumens, one in the left ventricle and one in the ascending aorta; force a PVC; and take pressure tracings. Differences in pressure after the PVC = gradient = obstructive HCM. It's what confirmed the HCM diagnosis in October 2008, and I made the cardiologist do it again today just to be sure.
Tomorrow is the last set of pre-op appointments, but no procedures or tests that I'm aware of. Both sets of parents arrive in Cleveland tomorrow afternoon.
Take care,
Michael
1 procedure down, 1 to go
Day 2 @ CC and the cardiac cath went fine. Doc came out to tell me (Jenn), "his coronary arteries look really good" and I told him that was" nice to know, but, umm, he's not here for that!". Michael reminded me that any time they're gonna crack ya open for heart stuff they check first to see if ya need other work too. Good news - he doesn't & we didn't expect any.
Great, so this is like a multi-pack discount or something? This isn't Jiffy Lube & he's not a Camry. ;-)
Great, so this is like a multi-pack discount or something? This isn't Jiffy Lube & he's not a Camry. ;-)
All's well though, he's resting & likely to get cleared in another few hours (they went in via femoral in groin this time so longer rest-up). More rest tomorrow & appt with big wig surgeon.
Peace
Jenn
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And the Grammy goes to ...
With no medical appointments until 12:30, I spent this morning creating a "Healing" playlist from my iTunes library for background music while in the hospital.
I combed my entire library (minus jazz, classical, and other niche themes) for songs that weren't too fast, too loud, or too electric guitar- or drums-heavy, and that preferably had an interesting progression and a soothing vocal presence. I ended up with 169 selections. Here are some of the highlights, as selected by my personal Grammy commitee:
Most Apropos Title (tie): Stitched Up, John Mayer and Herbie Hancock; Fix You, Coldplay
Most Apropos Title (runner-up, also a tie): Better Days, Shawn Colvin (cover of The Kinks version that surpasses the original IMO); Every Breath You Take, The Police
Least Apropos Title (tie): Here's Where the Story Ends, The Sundays; Heading for the Light, Traveling Wilburys
Most Likely to Make Me Crave Something Other Than Hospital Food: Barbeque, ALO (Animal Liberation Orchestra)
Best Provision of Emergency First Aid: Walking on Broken Glass, Annie Lennox
Best Psychedelic Side Effect of Morphine: Life in Technicolor ii, Coldplay
Best Psychedelic Side Effect of Morphine (runner-up): Yoshimi Battles the Pink Robots, Part I, The Flaming Lips
Best Reminder of the Outside World: Snow, Grey Eye Glances
Best Reminder to the Nurse to "Read the %&*#%$ Chart": What's the Matter Here?, 10,000 Maniacs
Best Use of the All-Too-Revealing Hospital Gown: People Gonna Talk, James Hunter
Most Unlikely Inclusion on Pure Musical Merit: When You're Next to Me, Mitch and Mickey (from the soundtrack to A Mighty Wind)
Most Likely to Make My Brother Alex Roll His Eyes in Hopeless Despair (tie): Party in the U.S.A., Miley Cyrus; virtually all of my Jimmy Buffett collection
I combed my entire library (minus jazz, classical, and other niche themes) for songs that weren't too fast, too loud, or too electric guitar- or drums-heavy, and that preferably had an interesting progression and a soothing vocal presence. I ended up with 169 selections. Here are some of the highlights, as selected by my personal Grammy commitee:
Most Apropos Title (tie): Stitched Up, John Mayer and Herbie Hancock; Fix You, Coldplay
Most Apropos Title (runner-up, also a tie): Better Days, Shawn Colvin (cover of The Kinks version that surpasses the original IMO); Every Breath You Take, The Police
Least Apropos Title (tie): Here's Where the Story Ends, The Sundays; Heading for the Light, Traveling Wilburys
Most Likely to Make Me Crave Something Other Than Hospital Food: Barbeque, ALO (Animal Liberation Orchestra)
Best Provision of Emergency First Aid: Walking on Broken Glass, Annie Lennox
Best Psychedelic Side Effect of Morphine: Life in Technicolor ii, Coldplay
Best Psychedelic Side Effect of Morphine (runner-up): Yoshimi Battles the Pink Robots, Part I, The Flaming Lips
Best Reminder of the Outside World: Snow, Grey Eye Glances
Best Reminder to the Nurse to "Read the %&*#%$ Chart": What's the Matter Here?, 10,000 Maniacs
Best Use of the All-Too-Revealing Hospital Gown: People Gonna Talk, James Hunter
Most Unlikely Inclusion on Pure Musical Merit: When You're Next to Me, Mitch and Mickey (from the soundtrack to A Mighty Wind)
Most Likely to Make My Brother Alex Roll His Eyes in Hopeless Despair (tie): Party in the U.S.A., Miley Cyrus; virtually all of my Jimmy Buffett collection
Monday, January 4, 2010
Welcome to Cleveland
It looks like Jenn may have stolen my thunder, so apologies if this is repetitive.
It's cold, blustery and snowy here, as expected. Fortunately the CC campus is self contained and there's little we need to do outside except cover the 2 blocks between the hotel and campus. And they know from plowing here in Cleveland.
Newark airport was a mob scene yesterday, and that's before the security breach that shut down Terminal C (which, fortunately, we missed). Nevertheless, we made it to Cleveland just about on time and got settled into the hotel - although we had to reject the first room we were given, as it was missing the standard microwave/fridge/kitchenette, but did feature a staggering interspecial variety of molds. Lunch at the hotel, and dinner at Lolita, a Michael Symon restaurant. We'd had this dinner reservation just about as long as my surgery appointment, and it was worth it. Yes, I had the charcuterie and the chicken livers ... please don't tell the doctors.
Today was packed with pre-op appointments. The EKG and chest X-ray went routinely. Next, the blood lab, where I just missed (again!) a fight between two techs, in front of patients. Next thing I knew, there were 25 people waiting and general chaos in the lounge. I finally talked my way into the head of the line (having a preset appointment list helped), and had multiple tubes drawn by 2 different techs. I suspect this isn't the first human pin-cushion impression I'll be doing.
Echocardiogram was next, and I've had enough of these to know the drill and semi-interpret what I'm seeing on the screen as the tech completes the ultrasound. The obstruction (gradient) is still there at rest (35-50 mm Hg), and they gave me inhaled amyl nitrate to simulate stress on the heart muscle. This caused the gradient to skyrocket to 120 mm Hg, and made me feel quite crummy indeed.
Lunch at the hospital cafeteria, which actually was pretty decent. Then the appointment with the cardiologist, Dr. Desai. He went over my test results and the plan of action (surgery), with not much surprise. He did detect a potential abnormality in the papillary muscles, which tether the mitral valve, and is therefore recommending a dual operation: a myectomy and papillary resection. This catch should improve my outcome, and it's the reason I'm at CC instead of anywhere else. In all my echocardiograms (and even a cardiac MRI), until now no one has suggested the obstruction might have more than one cause. Fortunately it should be evaluable and correctable at surgery.
I'm scheduled for a cardiac catheterization tomorrow, and surgical clearance and outpatient visit on Wednesday. I'll post daily with updates.
(Post-original-post scheduling update: the cath will not happen until mid afternoon Tuesday, so there may be little news tomorrow.)
Take care,
Michael
It's cold, blustery and snowy here, as expected. Fortunately the CC campus is self contained and there's little we need to do outside except cover the 2 blocks between the hotel and campus. And they know from plowing here in Cleveland.
Newark airport was a mob scene yesterday, and that's before the security breach that shut down Terminal C (which, fortunately, we missed). Nevertheless, we made it to Cleveland just about on time and got settled into the hotel - although we had to reject the first room we were given, as it was missing the standard microwave/fridge/kitchenette, but did feature a staggering interspecial variety of molds. Lunch at the hotel, and dinner at Lolita, a Michael Symon restaurant. We'd had this dinner reservation just about as long as my surgery appointment, and it was worth it. Yes, I had the charcuterie and the chicken livers ... please don't tell the doctors.
Today was packed with pre-op appointments. The EKG and chest X-ray went routinely. Next, the blood lab, where I just missed (again!) a fight between two techs, in front of patients. Next thing I knew, there were 25 people waiting and general chaos in the lounge. I finally talked my way into the head of the line (having a preset appointment list helped), and had multiple tubes drawn by 2 different techs. I suspect this isn't the first human pin-cushion impression I'll be doing.
Echocardiogram was next, and I've had enough of these to know the drill and semi-interpret what I'm seeing on the screen as the tech completes the ultrasound. The obstruction (gradient) is still there at rest (35-50 mm Hg), and they gave me inhaled amyl nitrate to simulate stress on the heart muscle. This caused the gradient to skyrocket to 120 mm Hg, and made me feel quite crummy indeed.
Lunch at the hospital cafeteria, which actually was pretty decent. Then the appointment with the cardiologist, Dr. Desai. He went over my test results and the plan of action (surgery), with not much surprise. He did detect a potential abnormality in the papillary muscles, which tether the mitral valve, and is therefore recommending a dual operation: a myectomy and papillary resection. This catch should improve my outcome, and it's the reason I'm at CC instead of anywhere else. In all my echocardiograms (and even a cardiac MRI), until now no one has suggested the obstruction might have more than one cause. Fortunately it should be evaluable and correctable at surgery.
I'm scheduled for a cardiac catheterization tomorrow, and surgical clearance and outpatient visit on Wednesday. I'll post daily with updates.
(Post-original-post scheduling update: the cath will not happen until mid afternoon Tuesday, so there may be little news tomorrow.)
Take care,
Michael
Pre-op Day 1- a.m. 2
Knew as soon as we got it that today's schedule was unrealistically tight. Like those class schedules in HS where you have to go from Calc in far corner, 3rd floor of North Quad to Art on 1st floor West in 3.25 minutes. Our schedule must have assumed no other patients would need same darn tests at same darn time - yah right! It most definitely did NOT take into account the techs in the bloodwork lab getting into a fight, causing a 20 person back-up & as M said "a poisonous atmosphere". Also didn't plan on them "losing" part of M's records, or having them expire b/c this whole thing has been planned so far in advance. Huh.
But it's still the best heart center in the world. :-)
Peace
But it's still the best heart center in the world. :-)
Peace
Pre-op Day 1- a.m.
We're here at snowy CC. And that alone may be our first lucky break because we got out of Newark Sunday before all hell broke loose apparently with some fool slipping past security & shutting everything down. We had to move rooms at the hotel b/c of 162 "suites" with promised fridges, microwaves, etc - we got the only room without! Instead we got a toilet that wouldn't shut up, wet carpet & funk smell. But we're good now.
We even got a stellar meal in last night at Michael Symon's Lolita, with great bang for the buck.
This morning I'm (jenn) doing the sit & wait round 1 while he's off for xrays, labs, then EKG & Echo before lunch break & more appts. Hopefully more pithy & informative posts will follow.
Peace.
JEB
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