As the cold/cough thing has continued into today, I've had to reschedule my Cardiac Rehab until next week. This makes me sad as I feel like it's a true setback to my recovery. Not anything huge, but I have no energy from all of the coughing and sleep is great until I wake up. I've been lucky enough to sleep until 5a most of the past nights, but as soon as I'm awake, it's cough cough cough. I'm taking meds but
On a tangential side note, I used to really like sneezing. I'm not sure if that's a "thing" but if ever I felt like I was going to sneeze, it seemed like a great accomplishment and relief. Now, with my sternal incision, I have to say that sneezes are one of the most painful things that I can do. I also should note that I seem to have a pathological ability to remember the pain until it's too late and I'm blurting out a huge sneeze followed by an agonizing scream!
Showing posts with label aortic regurgitation. Show all posts
Showing posts with label aortic regurgitation. Show all posts
Monday, January 30, 2017
Sunday, January 29, 2017
Cardiac Rehab Scheduled!
As I'm sure that I've mentioned, it has now been almost 7 weeks since my surgery and I'm back at work!! I'm currently wearing an event monitor until I have my baseline echocardiogram which has now been scheduled for early February. If everything goes well, once the echocardiogram has been completed, and the event monitor shows nothing interesting, I should be cleared to drive!!!!
In the meantime, I just got a call from the hospital and I am now set up to start cardiac rehab. I thought it would start earlier than now, and had reached out to see if I needed to be doing something, but apparently, this is a fine time to start.
The sessions are 1 hour long and I'll have an EKG machine connected while I walk/run/work out. I expect that I'll be pushed to my limits but that's probably a good thing.
Of course, because I am particularly lucky, I've managed to pick up another cold/cough from my sharing family. This time my dear son was out of school during the week with a bad cough and fever. I tried to stay away from him to avoid being infected but failed miserably. On Friday I started to feel crappy mid-day and by the end of the day I was coughing (which still hurts by the way).
Now it's Sunday and it has been a tough weekend. The constant cough has taken its toll on my energy level and sleeping isn't the easiest thing to do with a cough. A stiff hot whiskey got me from 9am through 5am overnight and the cough seems to be a little better today.
Tomorrow is the start of week 2 at work and is supposed to be the first day of cardiac rehab but I think that it is unlikely that I will be able to start if I'm coughing still (and have a fever). I feel like I have lost ground on my activity levels since I've been back at work, still can't drive (to go to the YMCA), and then got sick.
The INR blood thinning checks have been going fine but I think they have my thinning level a bit too high. I've seen a few bruises that I have no idea how I got. I'm going back next week so hopefully, we'll rework the warfarin level to keep me straight!
In the meantime, I just got a call from the hospital and I am now set up to start cardiac rehab. I thought it would start earlier than now, and had reached out to see if I needed to be doing something, but apparently, this is a fine time to start.
The sessions are 1 hour long and I'll have an EKG machine connected while I walk/run/work out. I expect that I'll be pushed to my limits but that's probably a good thing.
Of course, because I am particularly lucky, I've managed to pick up another cold/cough from my sharing family. This time my dear son was out of school during the week with a bad cough and fever. I tried to stay away from him to avoid being infected but failed miserably. On Friday I started to feel crappy mid-day and by the end of the day I was coughing (which still hurts by the way).
Now it's Sunday and it has been a tough weekend. The constant cough has taken its toll on my energy level and sleeping isn't the easiest thing to do with a cough. A stiff hot whiskey got me from 9am through 5am overnight and the cough seems to be a little better today.
Tomorrow is the start of week 2 at work and is supposed to be the first day of cardiac rehab but I think that it is unlikely that I will be able to start if I'm coughing still (and have a fever). I feel like I have lost ground on my activity levels since I've been back at work, still can't drive (to go to the YMCA), and then got sick.
The INR blood thinning checks have been going fine but I think they have my thinning level a bit too high. I've seen a few bruises that I have no idea how I got. I'm going back next week so hopefully, we'll rework the warfarin level to keep me straight!
Sunday, January 22, 2017
Another Update
Here's the last of the "catch you up" updates for a while - not sure how much I'll be able to keep going now that I'll be back to work but I'll try. And if that's not good enough, I'll try to try.
Sternal Precautions
Every day during my stay in the hospital, I met with an occupational therapist. She drilled into me the precautions that I needed to take to protect the incision site (and bones, etc.). This became my focus for learning for the time I was in the office:
The occupational therapist came by on day one with a tooth-brush, toothpaste, deodorant, and a wash-cloth. How great it was to start back to personal hygiene. Admittedly, I spat out my toothpaste a little too hard (causing a little collateral damage to my occupational therapist) and swooshed the mouthwash a little vociferously but it felt great the day after my surgery to get cleaned up!
Blood Pressure and Heart Rate
Mostly likely because of (or related to) the fact that I ain't got rhythm* (see my earlier blog post), my heart rate and blood pressure didn't quite get into the ranges that they would prefer. Rather than hold me in the hospital or mess around with my medication, they chose to discharge me. Still, my metrics are not in the perfect zone but we're slowly dialing in the meds to make it right.
INR Checks
Checking your blood's ability to coagulate probably sounds as enjoyable as it actually is. To be fair, I've been for a few INR checks and they have gone great (from everything being dialed in correctly, with a few changes to my dosage to keep things going in the right direction).
One thing I've seen with few nicks that I've had to my fingers during cooking etc has been that my current INR (around 3) definitely impacts my coagulation ability. It seems weird but a simple knife glance caused a cut that bled for quite some time (sorry if you are readying during dinner).
I'll continue to have regular INR checks but my mechanical valve allows for the INR readings of 1.8 to 2.1 (which is lower than many mechanical valves).
Click Click Click
Get ready to be grossed out (actually it's not that gross but I figure some warning about a passage about hearing someone's heart could be TMI). My heart valve is loud. There, I've said it. My wife and kids can hear my heart valve while they are watching the TV. I can't really hear it unless I take a large breath in deeply and open my mouth (weird huh??).
It's not like some audible reminder that my heart is beating is all that bad a thing, but I find it odd/funny/weird that people around me can hear my heart. I wonder when I go back into the office, if people will hear my heart asa they sit around me, or in conference rooms!! Perhaps that's my new party piece :)
Event Monitor Number 2
Ok so as you know, I passed out which caused an acceleration to the path to surgery. Well, if you pass out, and nobody knows what the cause is (even if we are all pretty sure that the issue is due to a congenital heart defect), they suggest that you cannot operate heavy machinery or drive a car until 6 months has passed. My cardiologist (who was the physician who said that I cannot drive after the passing out incident) said that given that we've had the surgery, he'll be happy to declare me fit for driving if we have another event monitor (this is the real-time heart telemetry being sent to a central monitoring facility that identifies anomaly in my heart's rhythm). He also wanted me to wait until I had my baseline echo-cardiogram (post surgery). So the next steps for me are to completed the event monitor (which I'm wearing now) in place until the echocardiogram can happen. I'm thinking that I can be driving by mid-February!
Back to Work!
Today is my last day of medical leave. Tomorrow I return to work after 7 weeks of being away. I'm feeling great about going back because I really trust that my team has been doing great things in my absence and when I get back, I'll be right back into the fun and games. Of course it's easier for me to go back to work when I can do it from home and doesn't require any physical lifting. I'm officially on "light duty" until mid-March and my wonderful employer have interpreted the as working from home.
* Obligatory reference to Phineas and Ferb can be sort of explained here:
Sternal Precautions
Every day during my stay in the hospital, I met with an occupational therapist. She drilled into me the precautions that I needed to take to protect the incision site (and bones, etc.). This became my focus for learning for the time I was in the office:
- Protect your sternum - Hug a pillow to your chest or cross your arms over your chest when you laugh, sneeze, or cough. (Side note - don't cough or sneeze unless you have no pain threshold....)
- Be careful when you get into or out of a chair or bed - Hug a pillow or cross your arms when you stand or sit. Do not twist as you move. Use only your legs to sit and stand. You will need help in and out of bed for a while.
- Ask when you may take a bath or shower - You may need to use a bath chair if you have trouble getting into or out of the tub. Do not use a grab bar. The shower chair is your friend for a few weeks.
- Do not lift or carry anything heavier than 5 pounds. 10 pounds is the combined limit with both hands but watch for the lever effect (don't hold heavier items out from your body).
- Keep your arms down as much as possible. Do not put your arms out to the side, behind you, or over your head. Do not let anyone pull your arms to help you move or dress. Do not reach for items.
- Do not push or pull anything. Examples include a car door or a vacuum cleaner.
- Do not drive while you are healing. Your surgeon will tell you when it is safe for you to start driving again.
The occupational therapist came by on day one with a tooth-brush, toothpaste, deodorant, and a wash-cloth. How great it was to start back to personal hygiene. Admittedly, I spat out my toothpaste a little too hard (causing a little collateral damage to my occupational therapist) and swooshed the mouthwash a little vociferously but it felt great the day after my surgery to get cleaned up!
Blood Pressure and Heart Rate
Mostly likely because of (or related to) the fact that I ain't got rhythm* (see my earlier blog post), my heart rate and blood pressure didn't quite get into the ranges that they would prefer. Rather than hold me in the hospital or mess around with my medication, they chose to discharge me. Still, my metrics are not in the perfect zone but we're slowly dialing in the meds to make it right.
INR Checks
Checking your blood's ability to coagulate probably sounds as enjoyable as it actually is. To be fair, I've been for a few INR checks and they have gone great (from everything being dialed in correctly, with a few changes to my dosage to keep things going in the right direction).
One thing I've seen with few nicks that I've had to my fingers during cooking etc has been that my current INR (around 3) definitely impacts my coagulation ability. It seems weird but a simple knife glance caused a cut that bled for quite some time (sorry if you are readying during dinner).
I'll continue to have regular INR checks but my mechanical valve allows for the INR readings of 1.8 to 2.1 (which is lower than many mechanical valves).
Click Click Click
Get ready to be grossed out (actually it's not that gross but I figure some warning about a passage about hearing someone's heart could be TMI). My heart valve is loud. There, I've said it. My wife and kids can hear my heart valve while they are watching the TV. I can't really hear it unless I take a large breath in deeply and open my mouth (weird huh??).
It's not like some audible reminder that my heart is beating is all that bad a thing, but I find it odd/funny/weird that people around me can hear my heart. I wonder when I go back into the office, if people will hear my heart asa they sit around me, or in conference rooms!! Perhaps that's my new party piece :)
Event Monitor Number 2
Ok so as you know, I passed out which caused an acceleration to the path to surgery. Well, if you pass out, and nobody knows what the cause is (even if we are all pretty sure that the issue is due to a congenital heart defect), they suggest that you cannot operate heavy machinery or drive a car until 6 months has passed. My cardiologist (who was the physician who said that I cannot drive after the passing out incident) said that given that we've had the surgery, he'll be happy to declare me fit for driving if we have another event monitor (this is the real-time heart telemetry being sent to a central monitoring facility that identifies anomaly in my heart's rhythm). He also wanted me to wait until I had my baseline echo-cardiogram (post surgery). So the next steps for me are to completed the event monitor (which I'm wearing now) in place until the echocardiogram can happen. I'm thinking that I can be driving by mid-February!
Back to Work!
Today is my last day of medical leave. Tomorrow I return to work after 7 weeks of being away. I'm feeling great about going back because I really trust that my team has been doing great things in my absence and when I get back, I'll be right back into the fun and games. Of course it's easier for me to go back to work when I can do it from home and doesn't require any physical lifting. I'm officially on "light duty" until mid-March and my wonderful employer have interpreted the as working from home.
* Obligatory reference to Phineas and Ferb can be sort of explained here:
Friday, January 20, 2017
Update Post - At Home and Recovering
I'm not going to complain too much but I want to note that I've written several "update posts" in the past 2 weeks and Blogger has eaten them (and I was using the standard web-interface). So this is a mega-update post in somewhat sorted by time order and I will post another shortly...
Discharge From Hospital
In my last post, I noted that my roommate was told to sleep well and the following day, he was whisked off to have a device implanted that would save his life if he has another heart attack! (Turns out he was out with his family the evening prior to being hospitalized and had a massive heart attack. Luckily for him, someone provided CPR which, while saving his life, caused a few broken ribs.)
On the other hand, my one night in Progressive Care didn't provide me much sleep (thanks to lots of machines beeping, lots of interruptions for checks and meds). One thing that the nurses in ICU told me about my extended stay (see here for more info) was that in Progressive Care, they could no longer administer Fentanyl, unlike ICU. This might seem flippant (and I don't mean to be) but for the time in ICU, pain levels seemed like a breeze. I think it was pretty clear once I no longer had access to Fentanyl, the pain was actually pretty real. Incision pain, muscle pain, back pain, were a not-fun mix of bedfellows with me during that last night.
On "waking" in the morning, all of the wonderful people that came to evaluate me were all talking optimistically about today being my discharge day. The nurse on duty was pretty clear, though (and I appreciate it) that "today" probably meant late afternoon / early evening as there were still things that needed to be done (like removing ports, pacing wires, etc) which would each require some bed-rest after they were done.
Later in the morning, a crew from my work came to visit (which was very kind of them as they had to travel 80 miles each way just to get there). While it was lovely to see them, I didn't have a lot of energy and it was a relatively short visit.
In the early evening, I was cleared to go home (after talking with the various specialists). I sat in the back of our van because we didn't want to mess with turning off the airbag in the front and I can't travel with an airbag with the sternal incision.
Sleeping in a Chair
Getting home was wonderful and I was lucky enough that my parents-in-law had purchased a motorized recliner chair for me prior to being admitted. When I got home, my wife had prepared the chair with bedding and I had an electric blanket and everything I needed for sleeping at home, in a chair! The bedding idea came from a friend who said that they had a situation where a convalescing relative slept in a chair for a period of time and that subsequently the chair always smelled of "convalescing person"!
The chair was a godsend. Having the mechanical/motorized functionality was really amazing for getting in and out of the chair (which isn't as easy when you've just had your sternum cut open!!). Generally speaking, it was a very workable solution. And we now have a very comfortable chair now that I'm sleeping back in bed!
Oxycodone
When I left the hospital, I was still taking Oxycodone for pain management (supplemented with Motrin and Tylenol). I hadn't really resumed eating in the hospital, but being home brought the wonderful treat of home-cooked food. What I didn't fully understand was the impact that Oxycodone had on my gastrointestinal system... Apparently, it effectively numbed my entire GI tract, which in turn rendered any kind of digestion impossible. A couple of days of eating resulted in a lot of discomfort... (note that I am not giving you the details in case you are reading during your dinner). In the end, I took a couple of days to get off the Oxycodone so that I didn't have to deal with that awful discomfort. Very quickly my GI track was back in shape and everything was good!
Medications on Discharge
Ok, this is one for those of you who may have to face something similar in the future. I'm thankful to the nurse from my surgeon's office when I had my pre-operative appointment for telling me what to expect on the other side of the surgery. Of the items that I noted down was that I will likely leave with a laundry list of medications and not to freak out. Sure enough, on discharge from the hospital, I had a scary list of medications to take daily.
Pain Meds - Oxycodone, Tylenol & Motrin
Laxative - Because of the Oxycodone
Stool Softener - Because of the Oxycodone
Antacid - Post surgery stress/medication impact on stomach
Blood Pressure - Control of blood pressure and heart rate post surgery
Aspirin - Platelet formation management
Blood Thinner - Because of my mechanical valve
Diuretic - To help reduce the post-surgery fluid retention
Potassium - Because of the diuretic
Had I not been prepared, I would have been really shocked to be taking home these medications. The good news is that approaching 6 weeks since the operation, I'm back down to taking only the longer term medications!
Daily Routine
Getting home was great but with no work, and a bunch of post-surgery things to do, I settled into a pretty good daily routine. Each morning, I had to weigh myself, have a shower with a clean towel and clean wash-cloth, and take my morning medication. I also needed to take my temperature and blood pressure in the morning. Normally the day included getting some walks. I would take my evening medications with dinner and then, a fair portion of the days, would just nod off to sleep in the chair!
Recording the information of which pills were taken and the blood pressure, temperature and weight data was critical so that it could be relayed to the surgeon's office over the phone and during visits. I decided that I would use Google Hangouts to stream the events as they occurred.
Forward and Backward Steps
As astounding as it is that I've recovered so quickly from Open Heart Surgery in 5 weeks, it hasn't all been rosy. I mentioned the Oxycodone impacting my digestive system, and during those days things were pretty awful. It really impacted my ability to get any physical exercise (which was only 12 minutes of walking at any given time). Those days passed quickly and I was back on track.
In addition, at about 4 weeks out, caught the cough/cold that was being passed around my family. (We tried hard to avoid me getting it, but with 3 kids it's pretty much of a sure thing that I would get it eventually.) Let me assure you that having a chesty cough and not knowing if you can take cough medication (it happened over a holiday weekend) was no fun with a recently sawed open chest! Sleeping was pretty tough too. Luckily the cough dissipated after about 8 days (it lingered) and I was very happy to be done.
Early in my recovery, my sister came from London to visit and participate in my care. It was another real godsend as she motivated me to get out and get my walks in every day, and drove me around, and took great care of me. She was able to see my progress and help through the times that felt like setbacks.
Discharge From Hospital
In my last post, I noted that my roommate was told to sleep well and the following day, he was whisked off to have a device implanted that would save his life if he has another heart attack! (Turns out he was out with his family the evening prior to being hospitalized and had a massive heart attack. Luckily for him, someone provided CPR which, while saving his life, caused a few broken ribs.)
On the other hand, my one night in Progressive Care didn't provide me much sleep (thanks to lots of machines beeping, lots of interruptions for checks and meds). One thing that the nurses in ICU told me about my extended stay (see here for more info) was that in Progressive Care, they could no longer administer Fentanyl, unlike ICU. This might seem flippant (and I don't mean to be) but for the time in ICU, pain levels seemed like a breeze. I think it was pretty clear once I no longer had access to Fentanyl, the pain was actually pretty real. Incision pain, muscle pain, back pain, were a not-fun mix of bedfellows with me during that last night.
On "waking" in the morning, all of the wonderful people that came to evaluate me were all talking optimistically about today being my discharge day. The nurse on duty was pretty clear, though (and I appreciate it) that "today" probably meant late afternoon / early evening as there were still things that needed to be done (like removing ports, pacing wires, etc) which would each require some bed-rest after they were done.
Later in the morning, a crew from my work came to visit (which was very kind of them as they had to travel 80 miles each way just to get there). While it was lovely to see them, I didn't have a lot of energy and it was a relatively short visit.
In the early evening, I was cleared to go home (after talking with the various specialists). I sat in the back of our van because we didn't want to mess with turning off the airbag in the front and I can't travel with an airbag with the sternal incision.
Sleeping in a Chair
Getting home was wonderful and I was lucky enough that my parents-in-law had purchased a motorized recliner chair for me prior to being admitted. When I got home, my wife had prepared the chair with bedding and I had an electric blanket and everything I needed for sleeping at home, in a chair! The bedding idea came from a friend who said that they had a situation where a convalescing relative slept in a chair for a period of time and that subsequently the chair always smelled of "convalescing person"!
The chair was a godsend. Having the mechanical/motorized functionality was really amazing for getting in and out of the chair (which isn't as easy when you've just had your sternum cut open!!). Generally speaking, it was a very workable solution. And we now have a very comfortable chair now that I'm sleeping back in bed!
Oxycodone
When I left the hospital, I was still taking Oxycodone for pain management (supplemented with Motrin and Tylenol). I hadn't really resumed eating in the hospital, but being home brought the wonderful treat of home-cooked food. What I didn't fully understand was the impact that Oxycodone had on my gastrointestinal system... Apparently, it effectively numbed my entire GI tract, which in turn rendered any kind of digestion impossible. A couple of days of eating resulted in a lot of discomfort... (note that I am not giving you the details in case you are reading during your dinner). In the end, I took a couple of days to get off the Oxycodone so that I didn't have to deal with that awful discomfort. Very quickly my GI track was back in shape and everything was good!
Medications on Discharge
Ok, this is one for those of you who may have to face something similar in the future. I'm thankful to the nurse from my surgeon's office when I had my pre-operative appointment for telling me what to expect on the other side of the surgery. Of the items that I noted down was that I will likely leave with a laundry list of medications and not to freak out. Sure enough, on discharge from the hospital, I had a scary list of medications to take daily.
Pain Meds - Oxycodone, Tylenol & Motrin
Laxative - Because of the Oxycodone
Stool Softener - Because of the Oxycodone
Antacid - Post surgery stress/medication impact on stomach
Blood Pressure - Control of blood pressure and heart rate post surgery
Aspirin - Platelet formation management
Blood Thinner - Because of my mechanical valve
Diuretic - To help reduce the post-surgery fluid retention
Potassium - Because of the diuretic
Had I not been prepared, I would have been really shocked to be taking home these medications. The good news is that approaching 6 weeks since the operation, I'm back down to taking only the longer term medications!
Daily Routine
Getting home was great but with no work, and a bunch of post-surgery things to do, I settled into a pretty good daily routine. Each morning, I had to weigh myself, have a shower with a clean towel and clean wash-cloth, and take my morning medication. I also needed to take my temperature and blood pressure in the morning. Normally the day included getting some walks. I would take my evening medications with dinner and then, a fair portion of the days, would just nod off to sleep in the chair!
Recording the information of which pills were taken and the blood pressure, temperature and weight data was critical so that it could be relayed to the surgeon's office over the phone and during visits. I decided that I would use Google Hangouts to stream the events as they occurred.
Forward and Backward Steps
As astounding as it is that I've recovered so quickly from Open Heart Surgery in 5 weeks, it hasn't all been rosy. I mentioned the Oxycodone impacting my digestive system, and during those days things were pretty awful. It really impacted my ability to get any physical exercise (which was only 12 minutes of walking at any given time). Those days passed quickly and I was back on track.
In addition, at about 4 weeks out, caught the cough/cold that was being passed around my family. (We tried hard to avoid me getting it, but with 3 kids it's pretty much of a sure thing that I would get it eventually.) Let me assure you that having a chesty cough and not knowing if you can take cough medication (it happened over a holiday weekend) was no fun with a recently sawed open chest! Sleeping was pretty tough too. Luckily the cough dissipated after about 8 days (it lingered) and I was very happy to be done.
Early in my recovery, my sister came from London to visit and participate in my care. It was another real godsend as she motivated me to get out and get my walks in every day, and drove me around, and took great care of me. She was able to see my progress and help through the times that felt like setbacks.
Friday, December 16, 2016
Roommate
For the majority of the days of my procedure and recovery, I had a room to myself. They do this primarily fo reduce the infection risks to the heart patient. Once you move on to Progressive Care, they attempt to prioritize heart patients to give them private rooms in Progressive Care too. In my case, with the delay in getting into Progressive Care, once an opening was available, I was assigned into the shared room.
When I arrived into the room, my roommate was not in the bed, and his whiteboard seemed to indicate that he was off having various heart procedures (an angiogram). I got to the room at about 5 pm and there was no sign of anyone until 8:15pm when a significant other showed up and asked me if I knew where he was. I didn't, but suggested that she push his call-light to speak with me nurse on duty.
Apparently she didn't really speak much English but said something about her daughter. She sat there next to my roommate's bed for about 15 minutes and then my roommate was wheeled into the room. He is in his late 50s (I would guess) and I believe him to be of Filipino decent. A doctor showed up with an update on his situation.
From what I could understand, he had had a heart attack and was lucky enough to have someone close by who administered CPR. He was taken to the hospital by ambulance and had an angiogram earlier in the day. They found that his main arteries in his heart were effectively fully clogged.
Unfortunately neither my roommate or his wife could understand what doctor said (even though he said it a few different ways) and they explained to the Dr that their daughter would be here in the morning and the Dr could explain it to her. The Dr encouraged my roommate to get a good night's sleep.
When I arrived into the room, my roommate was not in the bed, and his whiteboard seemed to indicate that he was off having various heart procedures (an angiogram). I got to the room at about 5 pm and there was no sign of anyone until 8:15pm when a significant other showed up and asked me if I knew where he was. I didn't, but suggested that she push his call-light to speak with me nurse on duty.
Apparently she didn't really speak much English but said something about her daughter. She sat there next to my roommate's bed for about 15 minutes and then my roommate was wheeled into the room. He is in his late 50s (I would guess) and I believe him to be of Filipino decent. A doctor showed up with an update on his situation.
From what I could understand, he had had a heart attack and was lucky enough to have someone close by who administered CPR. He was taken to the hospital by ambulance and had an angiogram earlier in the day. They found that his main arteries in his heart were effectively fully clogged.
Unfortunately neither my roommate or his wife could understand what doctor said (even though he said it a few different ways) and they explained to the Dr that their daughter would be here in the morning and the Dr could explain it to her. The Dr encouraged my roommate to get a good night's sleep.
Thursday, December 15, 2016
Progressive Care!
This evening, I was moved into the Progressive Care Unit. This is the next step having graduated Intensive Care. I actually graduated a couple of days ago but PCU didn't have any available spots. (We found out later that this actually unusual for this time of year when it's normally relatively quiet.) with PCU full, I stayed in my room in ICU until my wife found water seeping out from the wall (suspected plumbing leak) and then I was moved to a different room in ICU!
Sleep has been difficult for the past few days and there have been some ups and downs with the various tubes and ports being left in/removed. But right now I have only one central line for administering meds and taking blood, and I still have pacer wires running through my chest onto the surface of my heart (both of which are scheduled to be removed tomorrow). Beyond that, I'm free!
Tomorrow, I'm hoping to be seen by the various therapists in the morning and be discharged in the afternoon. It's crazy to think that I'd be discharged 4 days after open heart surgery! There is a long road to recovery still, but I've been lined up for success.
I've met so many wonderful people in the past 4 days, who have devoted their lives to help out people in need. Every single one of the nurses, respiratory therapists, occupational therapists, physical therapists, nursing assistants, students, etc were professional, loving, and caring people. At every step, they helped make our experience as smooth and plain sailing as possible; reassuring us along the way when there were minor setbacks. I will forever grateful to them and right now I'm trying to figure out how I can show my gratitude to them all. I understand that a post-recovery visit is appreciated but I'm not sure how that would work.
Sleep has been difficult for the past few days and there have been some ups and downs with the various tubes and ports being left in/removed. But right now I have only one central line for administering meds and taking blood, and I still have pacer wires running through my chest onto the surface of my heart (both of which are scheduled to be removed tomorrow). Beyond that, I'm free!
Tomorrow, I'm hoping to be seen by the various therapists in the morning and be discharged in the afternoon. It's crazy to think that I'd be discharged 4 days after open heart surgery! There is a long road to recovery still, but I've been lined up for success.
I've met so many wonderful people in the past 4 days, who have devoted their lives to help out people in need. Every single one of the nurses, respiratory therapists, occupational therapists, physical therapists, nursing assistants, students, etc were professional, loving, and caring people. At every step, they helped make our experience as smooth and plain sailing as possible; reassuring us along the way when there were minor setbacks. I will forever grateful to them and right now I'm trying to figure out how I can show my gratitude to them all. I understand that a post-recovery visit is appreciated but I'm not sure how that would work.
Wednesday, December 14, 2016
Scar Selfie - Might be Considered Gross!!!
Here I am less than 2 days after open heart surgery! I just walked 660 feet which, had I done it last Sunday before the operation, I would have been out of breath! I'm happy to report that it hardly even raised my heat rate!
Tuesday, December 13, 2016
The first 36 hours!
Well, I showed up to the hospital at 5am on Monday and was processed through the preoperative steps smoothly without too much fuss. Luckily I'm not a gorilla in the body hair department (sorry if TMI) so the nurse made easy business getting me slick as an Olympic swimmer. (Also probably TMI but I was glad there was no shaving of my *very* personal areas.) I met with the pump operator, the Physicians Assistant, the Surgeon, and the anesthesiologist. We covered the risks of the operation and the anesthesiologist put in my arterial line. I was wheeled into the operating room and before I knew it, the anesthesiologist placed the mask over my face, said something that I didn't hear and in the blink of an eye, I woke up in my room in ICU with a breathing tube in my mouth.
To say that it was uncomfortable would be an understatement but I had read so much about this step in the various books, I knew what was going on and I stayed calm. The thing that really bothered me was the breathing tube was making me gag, but the caregivers thought that I was trying to cough. I had a few waking/falling asleep cycles until they pulled out the breathing tube. I felt weird coming out but it was such a relief! I coughed once and inhaled a clean, full lung of air!
The was some minor cleanup and my wife was invited back into the room (she was excused just before to spare her seeing the breathing tube coming out). The respiratory therapist handed me the Incentive Spirometer which I aced in a single inhalation all the way to the top (and a little more beyond)! He laughed and threw it to the end of the bed!
All went fine until about midnight when my ventricular rhythm completely stopped and the pacer had to kick in. From then until about 8am, I was reliant on the pacer at which time my heart decided that it would start working again! For the last 12 hours, my heart's own rhythm has been humming along nicely.
The only real discomfort that I'm still experiencing is the drain tube has been left in and it is pretty uncomfortable. It's being left in so that it can drain any fluids once the pacer wires can be safely removed. The drain tube might be able to removed as early as tomorrow if the surgeon is OK with not having a drain for the pacer wires.
On the evening of the surgery day I was already up on my feet and today (day after) I've done 5 tours around the nurses station and spent 6 hours in the chair next to my bed. I've seen the Respiratory Therapist the Occupational Therapist, the Physical Therapist, and the Cardiac Therapist.
Because of the rhythm issues (and that the Fentanyl which is the only thing that help with the drain tube pain is only available here), I'm staying another night in ICU.
I'm so blessed to have a wonderful team of nurses, therapists and other medical professionals tending to my every need. Hoping for a few more hours of sleep tonight because I'm off most of my IV meds (swan and A line have been removed) the delivery and management of which caused most of the first night to be sleepless.
I've decided that I'm not going to try to be a hero. When I need pain meds, I'm going to ask for them!
To say that it was uncomfortable would be an understatement but I had read so much about this step in the various books, I knew what was going on and I stayed calm. The thing that really bothered me was the breathing tube was making me gag, but the caregivers thought that I was trying to cough. I had a few waking/falling asleep cycles until they pulled out the breathing tube. I felt weird coming out but it was such a relief! I coughed once and inhaled a clean, full lung of air!
The was some minor cleanup and my wife was invited back into the room (she was excused just before to spare her seeing the breathing tube coming out). The respiratory therapist handed me the Incentive Spirometer which I aced in a single inhalation all the way to the top (and a little more beyond)! He laughed and threw it to the end of the bed!
All went fine until about midnight when my ventricular rhythm completely stopped and the pacer had to kick in. From then until about 8am, I was reliant on the pacer at which time my heart decided that it would start working again! For the last 12 hours, my heart's own rhythm has been humming along nicely.
The only real discomfort that I'm still experiencing is the drain tube has been left in and it is pretty uncomfortable. It's being left in so that it can drain any fluids once the pacer wires can be safely removed. The drain tube might be able to removed as early as tomorrow if the surgeon is OK with not having a drain for the pacer wires.
On the evening of the surgery day I was already up on my feet and today (day after) I've done 5 tours around the nurses station and spent 6 hours in the chair next to my bed. I've seen the Respiratory Therapist the Occupational Therapist, the Physical Therapist, and the Cardiac Therapist.
Because of the rhythm issues (and that the Fentanyl which is the only thing that help with the drain tube pain is only available here), I'm staying another night in ICU.
I'm so blessed to have a wonderful team of nurses, therapists and other medical professionals tending to my every need. Hoping for a few more hours of sleep tonight because I'm off most of my IV meds (swan and A line have been removed) the delivery and management of which caused most of the first night to be sleepless.
I've decided that I'm not going to try to be a hero. When I need pain meds, I'm going to ask for them!
Sunday, December 11, 2016
Twas the night before...Heart Surgery!
Well here we are at 10pm, the night before the big day. In 6 hours, I'm getting up, wiping down with CHG wipes. "What the hell are CHG wipes?" I didn't hear you ask...
Chlorhexidine Gluconate wipes are used to clean down your body before you undergo surgery (and are often used during postoperative care to keep things clean). Tomorrow, when I wake up and disrobe, I will use a numbered sequence of wipes to clean down my body, then air dry. Then I'll get dressed into clean clothes and I'm ready to hit the road.
Chlorhexidine Gluconate wipes are used to clean down your body before you undergo surgery (and are often used during postoperative care to keep things clean). Tomorrow, when I wake up and disrobe, I will use a numbered sequence of wipes to clean down my body, then air dry. Then I'll get dressed into clean clothes and I'm ready to hit the road.
We're fortunate enough to have my wife's parents visiting so they will (poor things) have to get up and come over to our house from the cottage on our property at 4:15a to be the adults in the house to help the kids get ready and out for school at the appropriate time tomorrow.
I'm excited to be getting this heart valve replaced tomorrow and to start the journey back to a working heart! Now... I wonder what the chances of a great night's sleep tonight is...
Here's a photo of me getting ready to head to bed:
Wednesday, December 7, 2016
Preoperative Appointments Galore
Being told that you are having Open Heart Surgery in 1 week is pretty daunting but the surgeon and his PA talked a lot about success rates, me being young, reduced recovery alternatives to full sternotomy, and high tech valves that allow for less blood thinners. It's hard to get too freaked out about it when the impression is that it's a doddle. I'm not saying that they didn't explain risks but I came away with a feeling that this surgery was going to be a success and that's just that.
Today, we had a pro-operative appointment with the nurse from the surgeon's office. She has been at the office for 2 years, and before that 20 years at the hospital that my procedure is in next week. She worked in the very same Progressive Care Unit (PCU) that I can will be recovering in once I'm done with Intensive Care Unit (ICU). We have met Gena before and she is super-nice. She went though a curriculum of material over the course of 2 hours. Some of the information was about terms and medications that I'm going to hear / be prescribed, some of the logistics of the day before and day of surgery, and an overview of what will be expected of me along the way.
One thing that struck me about today's discussions is that we tended to focus on the negative. That's ok from time to time but it sort of broke my 'stay positive always'. We covered a fair amount of the "here's what happens when you don't do x" and "expect for y to happen if we see z'. I'm not complaining really. I understand being prepared, but I feel like it's more of an uphill battle after today's session than the foregone conclusion of success after the surgeon visit. We spent a lot of time talking about who to call and when given different scenarios relating to a less than perfect recovery.
It's probably wrong of me to think about the session in a negative light. I remember we agreed that we thought it was very informative. We both said we learned things and that it was helpful to have met and gone over the topics.
A few things in the instructions that caught my attention:
I've decided to not let today focus my energy on 'what ifs'. On Saturday, I take my final blood pressure medication. On Sunday, I get to do my pre-Monday uber-cleaning and on Monday, it's up early and into the hospital to fix this valve once and for all. Tuesday and beyond, I will focus on being better the day before. I think that's going to be my goal phrase when I'm asked how I'm feeling: "Better than yesterday!"
Today, we had a pro-operative appointment with the nurse from the surgeon's office. She has been at the office for 2 years, and before that 20 years at the hospital that my procedure is in next week. She worked in the very same Progressive Care Unit (PCU) that I can will be recovering in once I'm done with Intensive Care Unit (ICU). We have met Gena before and she is super-nice. She went though a curriculum of material over the course of 2 hours. Some of the information was about terms and medications that I'm going to hear / be prescribed, some of the logistics of the day before and day of surgery, and an overview of what will be expected of me along the way.
One thing that struck me about today's discussions is that we tended to focus on the negative. That's ok from time to time but it sort of broke my 'stay positive always'. We covered a fair amount of the "here's what happens when you don't do x" and "expect for y to happen if we see z'. I'm not complaining really. I understand being prepared, but I feel like it's more of an uphill battle after today's session than the foregone conclusion of success after the surgeon visit. We spent a lot of time talking about who to call and when given different scenarios relating to a less than perfect recovery.
It's probably wrong of me to think about the session in a negative light. I remember we agreed that we thought it was very informative. We both said we learned things and that it was helpful to have met and gone over the topics.
A few things in the instructions that caught my attention:
- Daily blood pressure, weight, pulse measurements taken and logged.
- Daily showers
- Clean t-shirt every day
- Clean pillowcase on the heart pillow every day
- Clean washcloth every day
- Sleep on clean sheets the night before the surgery (after a shower and a session using wipes on my whole body)
- My entire body will be scrubbed down after I'm put under
- I may be on 2 daily pills going into the hospital, don't be disturbed if I'm taking 10 pills (or more) daily after I leave (for a while anyway)
I don't know what stands out to me about these instructions, just that they are at the top of mind as I rethink the discussions. Also, 'don't be a dick to the nursing staff'. Seems kinda obvious but there were some instructions that made us wonder why the nurse felt it necessary to go over (she clarified that if she is covering it in her session, that means someone did it in the past and therefore it made the list) . Things like 'take the medication that you are prescribed' and 'call the office if your incision is red, inflamed, hot to the touch and appears to be separating'...
I've decided to not let today focus my energy on 'what ifs'. On Saturday, I take my final blood pressure medication. On Sunday, I get to do my pre-Monday uber-cleaning and on Monday, it's up early and into the hospital to fix this valve once and for all. Tuesday and beyond, I will focus on being better the day before. I think that's going to be my goal phrase when I'm asked how I'm feeling: "Better than yesterday!"
Tuesday, December 6, 2016
Blood Coagulation Monitoring
As I mentioned in Let's Do This!, my On-X mechanical valve will allow me to take a lower dose of blood thinners. It's not a recommendation that the surgeon could make to me because it is still under trial by the FDA, however it is likely that during my life, I will be able to stop warferin and manage my blood coagulation using aspirin.Why are blood thinners needed with a mechanical heart valve? How does it work?I'm glad you asked. (I know you didn't but it's my blog...)
With a mechanical heart valve, there is an increased risk of blood clots around the valve. Obviously blood clots = bad. Blood clots can inhibit the valve function but they can also lead to a stroke or heart attack. To combat this, patients with mechanical valves take blood thinners for the rest of their lives. The most common is warfarin (branded as Coumadin).
Users of warfarin (and anyone with a mechanical heart valve) are required to monitor their International Normalized Ratio (INR) on a frequent basis to measure the tendency of their blood coagulates. This INR can be significantly impacted by what you eat and the medication that you take. Foods rich in vitamin K can have a significant impact to blood coagulation. Thus, patients taking warfarin are normally advised to avoid significant changes in the consumption of leafy dark green vegetables, broccoli, cabbage, prunes because of their high concentration of vitamin K. Also, with the use of blood thinners, patients are advised to avoid fad diets and extreme and immediate changes in eating habits.
Blood thinners like warferin work by blocking the Vitamin K-dependent blood clotting factors. So the balance for a patient is essentially the amount of vitamin K vs the amount of blood thinners.
After my surgery, I will be having daily, then weekly, then bi weekly, then monthly INR checks. Because I've clearly shown an organized and technical leaning (like having the questions printed organized and up, working for a tech company etc.) the surgeon is recommending that we purchase a home-testing kit so that we are not reliant on other medical professionals to manage my blood thinning over time. Obviously immediately post-surgery this will not just be me going solo.
I will track and own all of my INR readings over time and will become an expert in how changes in my lifestyle or medications impact my readings. Having access to a full history of readings will allow other medical professionals the take into account how my body reacts over time. The surgeon said that most of the time, a doctor will prescribe a new medication for me and I'll simply follow up with the pharmacist about how it may impact coagulation.
Blood thinners like warferin work by blocking the Vitamin K-dependent blood clotting factors. So the balance for a patient is essentially the amount of vitamin K vs the amount of blood thinners.
 |
| Home INR Tester |
After my surgery, I will be having daily, then weekly, then bi weekly, then monthly INR checks. Because I've clearly shown an organized and technical leaning (like having the questions printed organized and up, working for a tech company etc.) the surgeon is recommending that we purchase a home-testing kit so that we are not reliant on other medical professionals to manage my blood thinning over time. Obviously immediately post-surgery this will not just be me going solo.
I will track and own all of my INR readings over time and will become an expert in how changes in my lifestyle or medications impact my readings. Having access to a full history of readings will allow other medical professionals the take into account how my body reacts over time. The surgeon said that most of the time, a doctor will prescribe a new medication for me and I'll simply follow up with the pharmacist about how it may impact coagulation.
Monday, December 5, 2016
This day next week... (oh and Screw You Blogger App!!)
Before going any further, I want to say that I now *hate* the Blogger app (Android) with the passion of a thousand suns. I've just spent the past 1.5 hours typing up a witty and award-worthy blog post about the goings on of today, and just as I was putting the finishing touches to it, the app ate it all up and spat it out in my face. I'm going to try go recreate the post to the best of my abilities, it will probably be not nearly as awesome as my original post, so you will have to artificially add a few extra globules of cool-sauce to it and imagine how nice it would have been to read the non-replicated junk that follows.
So today was a bit rough for me. Not rough as in painful, or discouraging, or anything like that (with the exception of the aforementioned blog post being eaten) [Am I allowed to bring that up if I'm trying to recreate the original post?? Heck, it's my blog I can do whatever I want!]. No, today was 'tender'. Let me explain.
Today I had 4 heart-related activities that needed to be accomplished. One was a simple form that needed to be signed at the surgeons office giving them permission to share medical information with the company that manages Medical Leave of Absences for my employer. That's a no-brainer because without that signed, they wouldn't share the info and the FMLA folks wouldn't process my claim to be paid while I'm recovering!!
Another activity that I completed today was a call to my health insurance company to confirm that all of the providers that will be working with me are covered fully "in network" by my plan. I was assured that the hospital itself and the surgeon and his team are covered by my plan but that I should take extra precaution to find out who the anesthesiologist will be and pre-screen them because many people get caught out with a large "out of network" bill that has no agreed pricing and the doctor can come after you for any differences between the covered amount and the actual charge. I called the hospital and they let me know that they us a local provider for all of their anesthesiology needs and recommended that I call them. When I called them, they assured me that they are fully in network for my insurance provider. This was all good news and somewhat of a relief to know that it is fully covered. Someday maybe I will write a blog post about the cost of all of this stuff (it's astronomical) and I'm incredibly lucky that my employers have wonderful benefits and that the entire debacle from the event in Vegas to the surgery next week will cost me no more than $1500 in total out of pocket expenses.
Next up was a 'pre-operative pre-admission" thing a the hospital itself, where we got all the paperwork out of the way now, so as not to have to deal with that on the day of the surgery. This also included taking some 'vitals', a couple of chest x-rays, an EKG (on a side note, am I the only one that is bothered by the fact that it takes 5 times as long to get the clips and probes in place as it does to do the actual test?? Figure it out people!!), some blood draws for various things including typing and cross-matching me in the event that I need blood transfusions during the surgery, and a nasal swab to test for MRSA colonization (MRSA + heart surgery = bad).
After that, the final chapter of today's hospital activities was a visit with the Occupational Therapist to discuss various elements of my post-surgery recovery. We were greeted by a soft spoken lady name Sue who was very pleasant. Sue asked various questions our house and my recovery team (i.e. who will be around me when I return home and what type of obstacles will exists there). She wanted to find out out if we had stairs in the house, how many steps up to the front door, what type of shower we had (to see if I could easily get in and out). Nothing out of the ordinary. Sue went on to demonstrate various activities that I will need to be cautious doing during my 4 - 6 week 'sternal precautions' time. These included sitting and standing from a chair, getting in and out of bed, and the reaching/grabbing/lifting/pushing/coughing limitations that I will have during that time. She explained that the time frame for 'sternal precautions' will be determined by the occupational and physical therapists that are assigned to me at the time. We covered return to work expectations and a better insight into things like not being able to drive during that time and things that I will become used to over the coming weeks (like ways to easily get comfortable i the bed).
I was also introduced to my new heart pillow from the hospital (not to be confused with Pumpy) which will be used during the aforementioned activities during the 'sternal precautions' time. This pillow (which is pretend heart shaped similar to the one on the right) is held against the chest to provide additional support to he healing sternum. Apparently the pillow even has a handy strap for taking with me wherever I go. There were some very strict instructions in the use of this pillow with dire warnings for not using it (or using it incorrectly).
Sue also covered some of the other elements of post-surgery life at the hospital including a fair warning that I won't get much sleep in the first few days with all of the nurses checking vitals, running tests, getting me to go between bed and chair, taking me on walks etc. She noted that the Occupational Therapist and the Physical Therapist assigned to me will set some goals during the recovery, and meeting these goals will be critical to my discharge from the hospital. One of those goals will be for me to take a shower. I was surprised to hear that the first shower that I take after surgery will also include my wife and the occupational therapist in the shower with me!! It seems somewhat unfair (but understandable I suppose) that I will be the only person actually without clothing but I was assured that my "personal privacy" will be maintained to the best of their ability... Sue noted that most people are so happy to be actually having a shower that they don't really care who will be in the room with them.
So all of these proceedings went down without a hitch. The hospital events were very efficient and all of the staff were their usual friendly selves. So why does today feel tender? I think it is a mix of a few things, not the least of which is that this day next week is the day of the surgery. In fact, this time (11:30pm) next week, I should be well into my recovery, maybe already out of bed, breathing on my own, been seen by my family and being taken care of by a group of highly trained professionals who have my health as their number one priority!
Maybe it's the "being at the hospital" today and seeing patients being wheeled around, and visitors coming and going, that makes the surgery that seems so far away that much more real and happening. I am reminded by a great scene in a great movie that I wanted to share with you I'm feeling right about now. Skip to 1:23 into the clip for the reference:
So today was a bit rough for me. Not rough as in painful, or discouraging, or anything like that (with the exception of the aforementioned blog post being eaten) [Am I allowed to bring that up if I'm trying to recreate the original post?? Heck, it's my blog I can do whatever I want!]. No, today was 'tender'. Let me explain.
Today I had 4 heart-related activities that needed to be accomplished. One was a simple form that needed to be signed at the surgeons office giving them permission to share medical information with the company that manages Medical Leave of Absences for my employer. That's a no-brainer because without that signed, they wouldn't share the info and the FMLA folks wouldn't process my claim to be paid while I'm recovering!!
Another activity that I completed today was a call to my health insurance company to confirm that all of the providers that will be working with me are covered fully "in network" by my plan. I was assured that the hospital itself and the surgeon and his team are covered by my plan but that I should take extra precaution to find out who the anesthesiologist will be and pre-screen them because many people get caught out with a large "out of network" bill that has no agreed pricing and the doctor can come after you for any differences between the covered amount and the actual charge. I called the hospital and they let me know that they us a local provider for all of their anesthesiology needs and recommended that I call them. When I called them, they assured me that they are fully in network for my insurance provider. This was all good news and somewhat of a relief to know that it is fully covered. Someday maybe I will write a blog post about the cost of all of this stuff (it's astronomical) and I'm incredibly lucky that my employers have wonderful benefits and that the entire debacle from the event in Vegas to the surgery next week will cost me no more than $1500 in total out of pocket expenses.
Next up was a 'pre-operative pre-admission" thing a the hospital itself, where we got all the paperwork out of the way now, so as not to have to deal with that on the day of the surgery. This also included taking some 'vitals', a couple of chest x-rays, an EKG (on a side note, am I the only one that is bothered by the fact that it takes 5 times as long to get the clips and probes in place as it does to do the actual test?? Figure it out people!!), some blood draws for various things including typing and cross-matching me in the event that I need blood transfusions during the surgery, and a nasal swab to test for MRSA colonization (MRSA + heart surgery = bad).
After that, the final chapter of today's hospital activities was a visit with the Occupational Therapist to discuss various elements of my post-surgery recovery. We were greeted by a soft spoken lady name Sue who was very pleasant. Sue asked various questions our house and my recovery team (i.e. who will be around me when I return home and what type of obstacles will exists there). She wanted to find out out if we had stairs in the house, how many steps up to the front door, what type of shower we had (to see if I could easily get in and out). Nothing out of the ordinary. Sue went on to demonstrate various activities that I will need to be cautious doing during my 4 - 6 week 'sternal precautions' time. These included sitting and standing from a chair, getting in and out of bed, and the reaching/grabbing/lifting/pushing/coughing limitations that I will have during that time. She explained that the time frame for 'sternal precautions' will be determined by the occupational and physical therapists that are assigned to me at the time. We covered return to work expectations and a better insight into things like not being able to drive during that time and things that I will become used to over the coming weeks (like ways to easily get comfortable i the bed).
I was also introduced to my new heart pillow from the hospital (not to be confused with Pumpy) which will be used during the aforementioned activities during the 'sternal precautions' time. This pillow (which is pretend heart shaped similar to the one on the right) is held against the chest to provide additional support to he healing sternum. Apparently the pillow even has a handy strap for taking with me wherever I go. There were some very strict instructions in the use of this pillow with dire warnings for not using it (or using it incorrectly).
Sue also covered some of the other elements of post-surgery life at the hospital including a fair warning that I won't get much sleep in the first few days with all of the nurses checking vitals, running tests, getting me to go between bed and chair, taking me on walks etc. She noted that the Occupational Therapist and the Physical Therapist assigned to me will set some goals during the recovery, and meeting these goals will be critical to my discharge from the hospital. One of those goals will be for me to take a shower. I was surprised to hear that the first shower that I take after surgery will also include my wife and the occupational therapist in the shower with me!! It seems somewhat unfair (but understandable I suppose) that I will be the only person actually without clothing but I was assured that my "personal privacy" will be maintained to the best of their ability... Sue noted that most people are so happy to be actually having a shower that they don't really care who will be in the room with them.
So all of these proceedings went down without a hitch. The hospital events were very efficient and all of the staff were their usual friendly selves. So why does today feel tender? I think it is a mix of a few things, not the least of which is that this day next week is the day of the surgery. In fact, this time (11:30pm) next week, I should be well into my recovery, maybe already out of bed, breathing on my own, been seen by my family and being taken care of by a group of highly trained professionals who have my health as their number one priority!
Maybe it's the "being at the hospital" today and seeing patients being wheeled around, and visitors coming and going, that makes the surgery that seems so far away that much more real and happening. I am reminded by a great scene in a great movie that I wanted to share with you I'm feeling right about now. Skip to 1:23 into the clip for the reference:
That's right... It's Happening Reg!! It's no longer something that's way off in the distance but something that's happening "next Monday"!! I'm really excited about the restorative power that this surgery is going to have. I'm feeling overwhelmed by the wonderful family and friends who are pulling out all the stops to help us get through this. I'm keenly aware of the fact that not having this surgery would ultimately result in my early departure from this world. I understand that it's better to get this sorted sooner rather than later. I know these things to be true, but this evening I'm still a little tender.
I'm going to try to sleep it off and take Tuesday by the horns.
Friday, December 2, 2016
Let's Do This!
Ok, so the day came for the Cardiac Surgeon consult. I don't remember if I noted this before, but the surgeon to whom I was referred does consultations on Thursdays. This is not a big deal except my visit with the cardiologist during which we decided surgery was the next step, was on a Thursday, and the following Thursday was Thanksgiving. So the next available consult was Dec 1st.
The On-X Mechanical valve is state of the art and patients with one of these valves do not have to use as much anti-coagulation medication (like warferin). In fact, in other countries doctors are recommending that patients control their blood coagulation with a simple aspirin regimen. The FDA hasn't approved this yet in the US, but blood coagulation is something would be my responsibility after the recovery period.
For the 2 weeks, I tried not to build up my expectations too much for how much would be resolved on "the big day" but, to be honest, it was pretty hard not to feel like the meeting would result in some answers. I didn't sleep very well the few nights before and on Dec 1, I couldn't think of anything but the 2pm appointment. In fact, I fell asleep mid-morning which turned out to be a Godsend because it took the edge off the waiting.
We showed up at the allotted time and were greeted with coffee/tea/water/juice and we did some preliminary tests (blood pressure, temperature, etc). I was asked to walk 5 meters, 3 times while being timed (never really figured out what that was about). We then had a really nice visit with the surgeon's Physician's Assistant who explained about their facility, the suggested procedure, the likely outcome, and then we went through all of the questions that I wanted to ask (see Questions to Ask Your Surgeon).
Both myself and my wife were really comfortable with the PA and he reviewed the hospital's safety record, the surgeon and his own records etc. We talked about various courses of action and landed on the same conclusion to which we had already come. Some of the questions resulted in some hilarity between us and it really made us feel like he had our best interests in mind.
When the PA was done, the surgeon (Chris King)
came in and we talked about the procedure. He was really very pleasant and not at all self-obsessed of full of himself. Quite the opposite, he was humble and friendly and answered our questions clearly without making us feel like we had dumb questions. He gave us as much time as we needed and didn't rush us at all.
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| Chris King MD, FACS |
Once we decided that we were going to proceed with Open Heart Surgery and that a Mechanical Valve would be the best option for. The surgeon wants to do a mini-sternotomy and the valve that he is going to use is an On-X valve which is made of pyrolytic carbon reducing blood-clots around the valve over time.
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| http://www.hopkinsmedicine.org/sebin/h/i/Chest-Mini-Stern.jpg |
The significance of the mini-stermotomy is that they will not cut down the full height of the sternum but will cut down from the top and then make a T cut to allow the surgeon to separate the ribs enough do the replacement. This makes the healing process smoother, reduces the risk of infection and blood loss, and shortens the hospital stay!! He mentioned that it's good for them too because it is easy to open it fully up if there are any complications too.
 |
| http://www.onxlti.com/ |
The On-X Mechanical valve is state of the art and patients with one of these valves do not have to use as much anti-coagulation medication (like warferin). In fact, in other countries doctors are recommending that patients control their blood coagulation with a simple aspirin regimen. The FDA hasn't approved this yet in the US, but blood coagulation is something would be my responsibility after the recovery period.
Once we all agreed on the next steps, the next question was "when do you want to have it" to which we both answered "as soon as possible"!!!! The next available slot was December 12th, so we jumped on that!! Kickoff will be 5am and we're hoping for smooth sailing!
A Wonderful Benefit
Staring down major surgery can be a pretty daunting situation. It is a very odd feeling because the objective and logical viewpoint is that the surgery will, in my case, be life saving and the outcome is most likely feeling better and a longer shot at life than without the surgery. And yet, when the cardiologist said "it's time to replace that valve", there was still a sinking feeling. The next reasonable thought is to seek a second opinion. It just happened that I was chatting with a friend at work, and she told me about a benefit that we have through work which offers a medical review! We both thought it was interesting that neither of us had ever heard of this, even though it has been available for some time.
The promotional materials for the benefit say that you gain the insight of a panel of medical experts who will review your situation and provide an clinical overview and answer any questions you might have. I was quite skeptical but decided to give it a whirl.
On October 31st 2016, I followed the instructions my company intranet and filled out a simple form (name and a brief over-view of my situation). Within 24 hours, I got a call from a cardiologist from “Advance Medical” (the company that provides the benefit). The doctor asked me to describe my situation in detail, asked lots of questions and gathered the names of the medical professionals that I had seen so far for my issues. He asked me to articulate all of the questions that I had, and helped me to formulate the wording to maximize the opportunity to gain the best insight.
He went on to explain that he would spend a few days gathering my medical records from each of my doctors and after that, he would assemble a packet of information, along with my questions, and submit it to a panel of experts in cardiology who would review my packet and questions, and would then provide answers to him (as my physician case manager). He informed me that he would contact me within 2 weeks with the results. In the meantime, he provided me with his email address and encouraged me to email him with any questions that I might have along the way.
Fast forward to November 30th 2016 when I received a 33 page pdf report, analyzing all of my medical records with 2 independent opinions on what my next steps should be. In my case, one of the experts was a Professor of Cardiac Surgery in Harvard (and Cardiac Surgeon in Massachusetts General Hospital) and a Professor of Clinical Medicine in UC School of Medicine. The report reviewed each of my visits with doctors and hospitals and had commentary (from each expert) about the results of all of each of the procedures.
The report also included a detailed (1 page per expert) set of recommendations and each expert answered the questions that I had originally given the cardiologist on the first phone call.
The following day, I received, via FedEx, 2 printed and bound copies of the report!
The two experts were in complete agreement that the best option for someone with my diagnosis should have open heart surgery using a mechanical valve. One of them noted:
This was exactly what I felt was what was in play (see Hurry up and Wait) and to hear it confirmed by some independent doctors gives me some confidence that we're moving in the right direction.
The promotional materials for the benefit say that you gain the insight of a panel of medical experts who will review your situation and provide an clinical overview and answer any questions you might have. I was quite skeptical but decided to give it a whirl.
On October 31st 2016, I followed the instructions my company intranet and filled out a simple form (name and a brief over-view of my situation). Within 24 hours, I got a call from a cardiologist from “Advance Medical” (the company that provides the benefit). The doctor asked me to describe my situation in detail, asked lots of questions and gathered the names of the medical professionals that I had seen so far for my issues. He asked me to articulate all of the questions that I had, and helped me to formulate the wording to maximize the opportunity to gain the best insight.
He went on to explain that he would spend a few days gathering my medical records from each of my doctors and after that, he would assemble a packet of information, along with my questions, and submit it to a panel of experts in cardiology who would review my packet and questions, and would then provide answers to him (as my physician case manager). He informed me that he would contact me within 2 weeks with the results. In the meantime, he provided me with his email address and encouraged me to email him with any questions that I might have along the way.
Fast forward to November 30th 2016 when I received a 33 page pdf report, analyzing all of my medical records with 2 independent opinions on what my next steps should be. In my case, one of the experts was a Professor of Cardiac Surgery in Harvard (and Cardiac Surgeon in Massachusetts General Hospital) and a Professor of Clinical Medicine in UC School of Medicine. The report reviewed each of my visits with doctors and hospitals and had commentary (from each expert) about the results of all of each of the procedures.
The report also included a detailed (1 page per expert) set of recommendations and each expert answered the questions that I had originally given the cardiologist on the first phone call.
The following day, I received, via FedEx, 2 printed and bound copies of the report!
 |
| Printed and Bound Copies of Expert Medical Report |
The two experts were in complete agreement that the best option for someone with my diagnosis should have open heart surgery using a mechanical valve. One of them noted:
"If you undergo tissue valve replacement, you will need at least three or four other interventions (transcatheter or standard surgical), assuming you will live at least into your seventies. In my opinion, the cumulative risks of these procedures is higher than the risk of life long blood thinners."
This was exactly what I felt was what was in play (see Hurry up and Wait) and to hear it confirmed by some independent doctors gives me some confidence that we're moving in the right direction.
Monday, November 28, 2016
Pumpy and a Better Blog Than Mine
A couple of weeks ago, while I was trying to process all of this crazy heart surgery stuff, a gift arrived in the mail. This little guy is a "realistic" heart plush toy!!! I think that is he is adorable! I posted a photo to Facebook but nobody owned up to sending him to me.
My kids asked me what his name was (which I hadn't really thought about) so I named him "Pumpy". Too literal? Probably but I liked it so it has stuck.
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| Pumpy the plush toy! |
He's made by http://iheartguts.com/ and they have a huge array of toys, and gizmos for a ton of different organs.
My personal favorites are the tonsil and the colon! How awesome is that???
I can think of a bunch of people that could use a plush toy of their offending body part!!
I also bought some button badges and a heart key-ring for myself (arriving soon).
Plush toys arriving from an unknown source would probably not be something that I would normally have shrugged and said "that's awesome" except that I have so many wonderful friends that might have sent him alone out of the goodness of their hearts! I wasn't even really in search of the sender - just a little curious. Just a couple of days ago, on of my best friends messaged me and asked if I had figured out who sent the push toy and followed the question up with a 😜 HaHa! Yes I had my sender. My buddy told me that he had seen a the toy on a blog that he had been recently reading and couldn't resist sending me one. I *had* to ask more about this blog, so he explained that it was about a young scientist who found out that she had a congenital heart defect and required open heart surgery to have it corrected. Of course, I got the name and started reading!
I have to say that my blog is mostly just random crap that is floating around my brain, but https://defectiveheartgirlproblems.wordpress.com is the work of a very clever and funny lady (Summer) who approached her surgery in a not-too-dissimilar way that I am. She did a lot of research, learned about the options, asked lots of questions and blogged her journey along the way. It was a fascinating read for someone of a similar age (ok she's 5 years younger) facing down a similar surgical procedure. Reading about the run-up to her surgery is eerily familiar to my current situation and following her through the procedure, recovery, return to the civilization and the on-going challenges of dealing in a post-operative world.
There were a few bits and bobs that she shared that I have been dwelling on (more like noodling on). One thing that she said was that she was going "science the shit" out of her experience by learning as much as she could about it and applying her scientific methods and understanding to each step in the journey. The funny thing is that I had only just recently said to my wife that we needed to "project manage the shit" out of my op and recovery (and about how what assistance we'll need around the house, with the kids, etc).
Something else she mentioned that she was "fucking pissed" at her heart; that her heart had violated the trust that she had placed in it all of her life to keep her alive. In her case, her heart was slowly getting worse but she had absolutely no symptoms so she didn't have a clue that there was anything wrong (beyond being told that the had a heart murmur in the past). I had never really given much thought to my heart beyond just being a body part, but something at which I could have a semi-disconnected emotion towards. But I totally get what she was saying.
In her case, while the surgery was successful, she had some serious pain issues post-operatively and then was hit with PTSD a year and a half later, probably related to how clinical her approach to her situation had been which failed to fully embrace the emotional elements along the way. The emotional roller-coaster that she experienced ended up changing the course of her life and even made her rethink pursuing a PhD.
Summer's blog really reinforced my own thoughts and feelings about the procedure and I'm hoping to learn from her experience and really attempt to address the emotional side at the same time as the medical/physical side. In fact, a few weeks ago, I engaged a therapist to talk through my emotions with. So far we've had some good sessions. Being Irish, the idea of "getting a therapist" seemed counter-cultural. Therapists are something in Hollywood movies (who always seem to hook up with their patients after the first visit). Seemed like a good idea to me!! When I told her that my Mother had indicated some concern that I would end up in an affair, she laughed and said she had a policy of no romantic or physical relationships with her patients!!
Sunday, November 27, 2016
Questions to Ask the Surgeon
Sleepless nights abound for the past few nights. Mostly because of the whirlwind of thoughts swirling around my head. I've found that my therapy is to put those thoughts out of my mind and into my blog. So probably most of the time, the posts are mostly a uninteresting, unintelligible mix of disorganized thoughts.
Over the past few nights I've been trying to assemble the questions that I want to ask the cardiac surgeon when I go to visit with him next week. It started out with just the things that came to mind to me, then I started looking online for other lists of questions to ask a surgeon. As you can imagine there are a ton of different sites that have plenty of questions, so I added the ones that I thought were relevant to me. In the interest of sharing I thought I'd write a blog with my question list so that I would add to the overall body of knowledge.
Here goes:
Questions to Ask Your Cardiac Surgeon
About Surgeon
- How many aortic valve replacements have you done?
- What has been your success rate? Do you know about long-term success rates?
- What area do you specialize in?
- How many total heart surgery procedures are done at your hospital each year?
- What is the overall mortality rate at your hospital?
- What type of certification(s) do you have?
- Do you, your team and hospital take my insurance?
Alternatives to Open Heart Surgery
- What options are available in Bremerton?
- What options might be available at in Seattle at VM or at Swedish?
- What are the Risks, known effectiveness/record/longevity of the surgery that you are recommending?
- Cardiologist’s description of newer methods. *
Mechanical vs Bovine Valve
- Ongoing coagulation monitoring / management.
- Likelihood of advanced procedures being available in the future to swap out bovine.
- Deterioration of bovine valve in later life comes with similar symptoms to mine now?
What to expect on the Day of surgery
- Normal timing
- Get there at what time
- How long from Pre-work until going to theater
- Time between in OR and being placed under anesthetic
- Time from ‘under’ to surgery completion
- Time between completion and waking up
- What prep work will be done to my body/hair?
- How many people will be in the operating room?
- Who will be doing the surgery?
- Who will be the anesthesiologist?
- How often will my family be given updates?
- Urinary catheter? How long does that stay in during recovery?
- What are the possible complications during surgery?
- Will I need to fill out paperwork to suspend my advanced medical directive?
- What happens to the valve tissue that is removed?
- Can you take photos of the procedure for me?
Recovery
- How soon can my family see me?
- Can I have company overnight?
- Estimated s duration of stay in hospital
- What medical home-help requirements will I require?
- What are the time estimates before returning to:
- Being up and about in hospital
- Walking (for as much as I amble)
- Lay on side or front
- No longer need assistance with daily life
- Returning to Work
- Driving a car
- Having Sex
- Feeling ‘normal’
- What will the pain management be during recovery.
- What type of record keeping will I need to do (blood pressure, coagulation metering, etc.)
- What doctors will be involved during Post op/Recovery in/out of the hospital:
- Who?
- How often?
- Dietary restrictions during recovery? Low salt/extra fiber/prune juice?
Post recovery
- Emotional support requirements
- Post op visits (on going)
- Dentist /strep throat implications
- Long term lifestyle restrictions?
Specific Concerns<Whatever concerns might be personal between you and surgeon>
* My cardiologist was not very enthusiastic (at my last visit) about the newer surgical methods. He noted a few of his recent patients who went off to Seattle and even to the Cleveland Clinic (top rated Cardiac facility in the country) and ended up with bad outcomes from the less invasive methods.
Thursday, November 24, 2016
Simple Revelation
As you know, I'm currently in an infuriating holding pattern between being told that I need to have heart surgery and talking with the cardiac surgeon about what the next steps are (including when I should anticipate actually having the surgery and what form it will take). This is certainly a time where I'm just wishing that everything can be out of the way and for Dec 1st to just be here now. To some extent it's tough because I'm sort of wishing this wonderful 4 day weekend to be over so that I'm just that little bit closer to finding out what's happening next.
During this past week, I believe that I have had an epiphany about how I'm feeling about the some of the situation. And that is that I just don't like being 'looked after'. It seems kinda petty but most of my career, I've been the problem solving guy, or the answers guy and I've rarely leaned very heavily on others to find solutions. Don't get me wrong, I've worked on some great teams and with some wonderful coworkers but mostly, I've been someone to propose a solution or solve a problem. I'm just now coming to terms with the fact that when others are helping me (dishes, making food, carrying things, getting coffee, etc) I'm not in my element.
I'm now pretty much at the point where walking to and from the refrigerator causes me to be short of breath, carrying something somewhat heavy makes me breathe heavier than normal and breathing exclusively through my nose causes me to not be getting sufficient oxygen. My darling wife and kids are doing their best to stop me from over-stetching myself much to my own shagrin. I recognize that I need to accept their help and admonition but emotionally I'm not ready for that.
Today, I cooked our traditional Thanksgiving lasagnes. It's been something we've been doing for a while. Eat lasagne, stay in our jammies and have no great expectations for the day. This was the perfect setup for someone in our situation and we worked it to the end. This weekend comes time to put up the Christmas tree, without my help bringing the boxes down from the attic. I should probably feel more sad about that than I do (the part where I can't help) but perhaps this is a me focusing on the positives of being helped out!! ;)
I was helped out by my sweet 7yr old who did a remarkable amount of the tasks including peeling zucchinis and gathering all of the ingredients.
Today I'm thankful for my family and friends and for a short time between now and getting a new heart valve.
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