About This Blog

This blog came about in 2010 when I had to have toe surgery. I had a journey to write about so I set it up. Now in 2016 I found out that I have a congenital heart defect and that I will require open heart surgery to correct it.

I'm using this blog as a way to offload my crazy brain into a format that I can share with my friends if they are interested in reading it, and also to document my journey so that I can read it in the future and laugh about it :)

Fair warning: My blog posts are mostly a uninteresting, unintelligible mix of disorganized thoughts.

I love comments and shares so please feel free to interact!

Follow me on Twitter and Instagram @srphayre if you like photos of sunrises and sunsets.

Monday, January 30, 2017

Rehab Can Wait Apparently

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!

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!

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:

  • 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: 



Mindfulness for Kids

OK so this isn't a parenting blog (or that wasn't the purpose for sure) and I claim no expertise in the area other than 3 kiddos (12, 10, 7.5) that are well-balanced and loved by their peers and teachers. But here goes a post about a conversation that I had with my 12 and 10 year old earlier today...



Today we had some struggles about having the right reaction to being corrected. It seems that often in our house, any time there is a correction, it results in an escalation with a response that is totally inappropriate and out of proportion to the situation.  I asked my two older kids tonight about whether they considered how their reaction would impact the situation.  It seemed to be an "a-ha" moment where they openly admitted that their first reaction was to blurt out whatever the first thought that came into their heads.  

I've challenged my kids to ask the following question:
"What is the best reaction that will most likely make this situation better?"
We went though not only their behavior earlier in the day (with this mindful question) along with other hypothetical situations.  As we talked about it, there seemed to be a 'click' in their minds about it.

In each of the examples, we talked about how there can be a good and a bad outcome and how their reaction will drive that outcome. 

Some of the revelation seemed to center around the idea that it is not always the first thought that should be shared with your parents.  They seemed to think that it was worth asking the question before responding.

Trading off what they really deserve vs. something that they feel that they are somehow entitled to is a pretty big part of the discussion. Of course there is a significant element of this trade-off being weighing the right thing to say against the first thing out of their mind.  

I know I haven't solved all of our parenting woes, but I'm going to print up some posters with that question.  I'll put the posters on a few key locations around the house and we'll start to socialize the question with the kids so they they can be more mindful when they start down the tumultuous maelstrom of tantrum vs trade-off.

Wouldn't it be great if we could encourage the kids to think about what the *best* response would be rather than the *first* response???

Watch this space! :)

P.S. There are few things more scary than going into your kids' bathroom and seeing that there is no toilet paper in there...

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 SoftenerBecause 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. 

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.