We watch Marina’s cross country race & Stella plays the clarinet for us

We have usually flown south with the hummingbirds by the time fall arrives and are deep within our beloved deserts by this time.  Here are three of the good thing about being home now....

If we had not been home this fall while Dan was recovery from heart surgery, we would have missed Marina’s excellent cross country race:







And we would have missed seeing and hearing Stella play beautiful music on her clarinet:




And we would have missed having our last dinner with them at Patron's:



These are three of our happy memories of this fall.


addendum:

The next spring we got to go to one of Stella's band concerts:

Five weeks after open heart surgery: Movin' on

We are gradually getting back to normal, very gradually (and we actually were never that normal anyway).

My chest and back still hurt, and probably will for two more months.  The heart is apparently healed, although the issue with it beating irregularly will be something to monitor for the future.  The Atrial Flutter comes (grrrr) and goes, so we'll have to see about that.  The sternum takes a long time to heal.

We are leaving for Mesa, for Nuestra Casa, tomorrow.   It is getting colder and wetter in the Pacific Northwest, and it is a necessity that I can get out and walk (a lot) every day.  We can do that better in the warm Arizona sun.

We also have a pool nearby, about a 10 minute walk, and I can rehab in it.  I'll have to use one of those noodle things, which I promised myself I'd never do, because I can't exert any effort with my upper body for another two months.  So, I'll look like an old person at the pool, even though we all know I'm not really an old person.  I'm just a 70-year-old person---the age I always thought was old until it applied to me, and then the rules changed.

For one month I have done little except sit in front of our windows and look out at our woods.........and walk.  It's a wonderful sight out our windows, but other than the occasional deer to break the monotony, it is getting a little old.  Before my surgery I put up some bird feeders because I thought we might attract some native birds, and I love watching birds.  Yesterday I brought the feeders and seed back inside--hardly a seed was eaten.  We need to see something else.

We have been going to the park every day for the past three weeks to take walks.  We have worked up from 1.3 mile walks to 5.25 mile ones.  There are about 3 miles of trails in this local park, so to get in our 5+ mile walks we have to repeat a lot of them.  We are very grateful to have something this nice this close to us (about a mile from our home).

Since I was discharged from the surgeon, three weeks and two days ago, we will have walked just under 100 miles, almost all in these woods.  It's been great for my recovery.

Us in our local woods:

To get the one mile to these woods I sit in the back seat, with my heart pillow protecting my sternum, and Vicky has done all of the driving.  Come to think of it, Vicky has done all of the lots of stuff these past five weeks.

 She does all of the driving.

 Hauls wood:

 

Makes food, does laundry, and the list goes on and on.  All cheerfully.  My bionic, cow, plastic, metal, sutured, repaired heart belongs to her.

Four weeks out from open heart surgery: The beat goes on......but irregular

A common after-effect of heart surgery is an irregular heart beat.  I had a bout of something called Atrial Fibrillation while in the hospital.  For the first two weeks I was home my blood pressure and heart rate were normal.

However, out of the blue, my heart went out of whack--it started racing, my blood pressure dropped, and my blood pressure cuff said I was experiencing Atrial Fibrillation again.

So yesterday I met with my cardiologist who did an EKG and reported that I had something called Atrial Flutter.  As Vicky said, "Flutter" sounds better than "A-Fib" because "Flutter" is like what a butterfly does and "A Fib" is what bad people tell. 

We discussed options and decided I would get a procedure where my heart was given a mild electrical shock.  So I had that today.

It sounded like it was pretty straightforward---just go in and I would lay down and they would put me out for a couple of minutes, give me the shock, and I'd be on my way.  However, it is more involved than that.  I had to fast for 10 hours, report to the SURGERY center (again),  dress up in hospital garb, get an IV, and (worst of all) wear the little yellow booties and shower cap.   Vicky teases me about the shower cap---I can see why.

Aren't I the cute patient?  Like my shower cap? 

Anyway, four weeks from the day of my surgery I was back at the hospital's surgery center, which gave us a mild, slightly unpleasant feeling of deju vu.   The cardiologist administered a mild shock and the heart beat went into "sinus," or was "sinus," or something with the word sinus in it, which means good.

Of course when we first heard about this procedure we both imagined it was like in the movies where someone holds two big paddles to someone's chest, yells "CLEAR," and then the unfortunate victim bounces a foot off of the table. Like they did with Frankenstein.   But actually it is a very mild shock (and they didn't yell "CLEAR!")....and even though  am now up and walking around, I'm not Frankenstein (even though I do have a bunch of metal in me like he did, poor guy).

The staff at Virginia Mason were once again excellent at explaining things and providing me with information.  I was shown a print-out of the EKG before, during and after the procedure.  I asked if I could have a copy, so they provided one.  It's very interesting.

I have divided the output into before shock and after shock.  This one shows my Atrial Flutter, and then the mild shock, where everything goes nuts:

The next one sort of overlaps with the first one, starting with when my heart got excited from the shock, and then it immediately went into that sinus thingy, which is good.  The whole thing was done in 15-20 heartbeats, or about 15 seconds.  Absolutely amazing.  The cardiologist said that sometimes it requires several shocks, but it was one for me.  I had hoped this meant something better about my prognosis, but she indicated it didn't.  Still, I"m proud--only one shock to my heart!!!

And I am taking a new medicine to reduce my heart rate.

All solved?  No.

It is a big unknown, which I have found the aftermath of open heart surgery to be.  Although my heart immediately went into its appropriate rhythm, this is the usual outcome for this type of shock procedure.  The problem is that there are no predictive factors regarding how long it will last.  Could last a day, could last forever.

So for the foreseeable future, I am going to be quite anxious about it.  But the only way to deal with these things is to meet them head on.  I had the option of trying only medicine, and that would have been easier.  However, having the "Cardioversion" (i.e., shock) is a more reliable way of getting the heart beating appropriately right away, which has its advantages, so we decided to do that.  The sooner you can get the heart beating appropriately the more likely it is that you can prevent the heart from "learning" to beat inappropriately, or something to that effect. 

I got to drop one medicine yesterday, but added another--the one to lower my heart rate.  If I would take about 10 of these every day my heart rate might be where Vicky's is naturally---she's like a highly trained athlete in that way (and others, actually;  she's quite amazing).

All par for the course.   I am much better physically this week than I was five weeks ago before the surgery.  Although at that time I had no abnormal heart beat and was not in pain from having my sternum opened, I had a time bomb in my chest.  

So we deal with the after-effects.  I may have them never again, have them for awhile, or have them forever.  I feel fortunate that I get to deal with after-effects--some people don't. 

But, man is this type of surgery ever a journey that doesn't seem to end.  For both of us.  I can't imagine taking this journey on my own.  I am very grateful.

Three weeks out from open heart surgery: When being an obsessive-compulsive is a good thing

Today marks three weeks out from open heart surgery.

I'm amazed at the body's resilience.  I still have many weeks until I am healed, and some challenges until that time, but it is mind-boggling that someone can feel as good as I do after only three weeks after being torn apart as I was, much less just simply survive this type of operation.

Make no mistake:  I experience a lot of discomfort and at times pain.  And feeling good comes and goes, alternating with being very tired.

I should have, but didn't, realize that there is another stage to this recovery, in addition to healing my heart and healing my sternum.

That stage is the 'what medications will I have to be on for the rest of my life' stage.  That's the one I am in now.

Right now I am taking a blood thinner, a statin to reduce cholesterol (which is already low), and a medication to modulate my heart rate.

That's in addition to some prescribed over-the-counter medications.

The medicines are designed to prevent blood clots, which means to prevent strokes.  How many of them I will need to take for how long is to be determined.  I hope none of them, but we will adjust to whatever is needed.  Small price to pay for living.

Although I have been told by doctors that red wine doesn't interfere with these medicines, I have decided to forego alcohol until my system becomes stable, however long that might be.  This means none of my precious Chianti.  Ouch.  With all of my medicines my liver is also working overtime, so it seems best to cut it some slack.

I'm not even sure whether some amount of red wine might help--I just don't know and count on my cardiologist for this information. 

We do medications twice a day.  When we do that I am reminded of my watching my parents carefully taking their medicines.  We too are very careful.  We have a list, we don't do anything else at that time which could cause a distraction, Vicky hands me the pills (child tamper proof bottles are also post-open-heart-surgery proof bottles), and we both read the label out loud before I take any.  After I take one, she moves it to the "taken" container. No mistakes allowed.

Our plan is to take everything precisely as prescribed so the cardiologist will not have to guess whether a certain reaction I am having or not having is due to the medicine or because of not taking the medicine correctly.

And not taking one's prescribed medicines is a huge problem for physicians, with some studies indicating 50% of patients with serious illness are not compliant with their medication prescription.  Here are some other facts, stolen from an on-line article:

-Approximately 125,000 people with treatable ailments die each year in the USA because they do not take their medication properly.

-Fourteen to 21% of patients never fill their original prescriptions.

-Sixty percent of all patients cannot identify their own medications.

-Thirty to 50% of all patients ignore or otherwise compromise instructions concerning their medication.

-Approximately one fourth of all nursing home admissions are related to improper self-administration of medicine.

-Twelve to 20% of patients take other people's medicines.

-Hospital costs due to patient noncompliance are estimated at $8.5 billion annually.

OK.  What gives?  Actually, nobody knows.  Some factors have been identified (e.g., understandably more difficult for the very elderly; sometimes the cost is prohibitive), but frankly nobody knows for the majority of cases.  People just don't do it right a whopping percentage of the time.  I can't wrap my brain around this---not taking medicines that can keep you alive? I remember reading, years ago, about a form of childhood leukemia that was something like 97% curable if medicines were given to the children  appropriately.  But a huge percentage of parents were non-compliant with the medicine regime.
Again, I ask, what gives?

It's been three weeks now and I have not missed a pill.  If it is prescribed, I take it.

Not only that, but I do a twice-daily "systems check."  I take my blood pressure (cuffs are very inexpensive), pulse, temperature, weight, and amount of air I can suck through my little gizmo that is designed to inflate my lung sacs.

Since pain pills are something that is individually determined, we keep records, detailed ones, of the time of the day I take my acetaminophen. We know, to the mg, the amount of pain medicine I have taken since discharge.

Be sloppy about getting oil changes in your car, if you have some unmet need to be sloppy, but not about medicines. 

I just went through hell with this surgery, fear, pain and all of the rest.  And to then not take medicines that are prescribed is unthinkable.

There are times and places in one's lives to be obsessive-compulsive.  This is a major time for that.

We have also been following the Doctor's "prescription" to "walk as much as can be tolerated."  We have a park nearby with terrific trails (flat, wide, graveled, absence of roots to trip over), and we go there every day for our daily 'long walk."  We also take shorter walks in our driveway, to spread the walking out over the day.  Our long walk is now up to 3.5 miles.  And for several days now I have exceeded 10000 steps.  We will keep it at that level for a few days, and then kick it up a bit, which is what we have done since discharge.  While walking I stop periodically and just stand still, to make sure everything is OK, that I'm not dizzy or anything.

It is flu season.  I stay away from people.  We wash our hands several times a day, we use an antiseptic hand cleaner, and I stay out of all stores except the grocery store.  While in the grocery store I wear a mask.  And all I do is help pick out a few groceries.  When the cart is full I leave.  I avoid people whenever possible. 

The take-home point is that I, with Vicky's help, am being meticulous about every detail.   Every.......single.......detail.

And 50% of people don't take medicines as prescribed.

I am also instructed not to lift anything over 10 pounds.  I haven't lifted anything over 5 pounds, just to play it safe.  I also avoid a lot of unnecessary stretching and bending.  This means, of course, that more of this falls on Vicky, but that is fine with her.  She knows my "job" is to heal, and hers is to make it so that can happen.  She happily has taken on more during this period of our lives.  But I have too---I had this surgery to give us more years together.  Team effort.  Go team!

There is so much that seems out of our control, but these things are within our control.

During the surgery and while recuperating at Virginia Mason I expected that every professional we dealt with was obsessively meticulous.  And it is clear they were.  There is a reason for that level of checking/double-checking/etc.  So we are following their model while at home.

If something goes wrong now, and it still could, I will know that it is simply something beyond anyone's control.  It won't be because of Virginia Mason, my doctors there, Vicky, or me.  We have all done our best. 

Two weeks out from open heart surgery

It has been two weeks since the surgeon opened my chest by cutting through my sternum, deflated my lungs, stopped my heart, and then cut into it.  Two new pieces were substituted for the two pieces that were going to kill me.  And then a series of wires were used to reconnect my breast bone.  In my body now are pieces of plastic, pieces made from a cow (for real) and a whole lot of metal. 

These kinds of open-heart surgeries occur frequently, so I am not the only one.  However, that knowledge doesn't really do much for me.   The survival rate is high, but so is the complications rate.  And although the survival rate is high, it really only is if a certain perspective is omitted.

That perspective is that 1.5% die from the operation.  This means that most people survive.  But emotionally it means that if you considered that every day you had a 1.5% chance of dying, then it isn't so hot.  Without the operation, I had a virtual 100% chance of making it to the next day.  With the surgery 1 in 65 people have the last thing on earth they see is an operating room.

One of my favorite actors, Bill Paxton, died from this type of surgery.  He was 61, and I am 70, a whopping difference.   How ironic it is that his most famous movie line was "Game over, man, Game over."  (Aliens).   I paid close attention to his heart surgery, although I also realized that his heart was, overall, not as strong as mine.  He had rheumatic fever as a child.  All of my tests showed my heart and arteries were in terrific shape--a testament to good genes, good food (thanks Vicky), a fairly stable history of exercising, and a consistent and substantial amount of exercise especially over the past 7 years (thanks Vicky).

In other words, my heart is strong because of good luck and because of Vicky.

The operation also carries with it, in addition to a risk of dying, a fair risk of complications.  The most important is a stroke.  I am taking Coumadin for that, which I hate because it means I bleed easily and have to get my blood tested every week.  I am also experiencing something called Atrial Fibrillation, which is an abnormal heart rhythm.   I am taking medication for this, but am still experiencing it.  Most likely it is a result of the surgery, although it is possible I had episodes prior to surgery and just didn't realize it.  I'll never know.  But it is a problem that must be solved for the long-run.

But, we will deal with it.  I wish I didn't have any of this, but I am, after all, 70.  I am no longer a young man. Heck, I am getting Social Security, Medicare, just bought a home in a retirement community with a bunch of old people, still put two spaces after a period, love 1950s western movies, and complain about the "younger generation."  What more do I need in order to know that I am old?

It has been, at times, a brutal 2 weeks.  I have said that it is like being dragged under a truck.

But I wanted to live another 20 years, and this operation was my only shot at that.

I have read that there can be depression after this operation.  I understand that now, but wonder if it is something other than depression.  I tire easily, am not motivated to do much, am bored, and am in constant discomfort/pain.  That could be seen as depression.  But the mind set I have isn't a depressive one--instead it is a hopeful one, a chomping at the bit for Vicky and me to get back into our life together.

These past two weeks have also given me a powerful, mind-boggling sense of how important having someone like Vicky is at a time like this.  She makes it so that I can make best use of my limited strength and energy.  The number one thing I need to do each day is walk.  It is the prescription I left the hospital with, so we do that.  We have a park close-by that we visited a few times before the operation so we could scope out the best trails (graveled, not slick, no roots).  Now we go there every day and do just under a mile and a half walk.  We take smaller ones also.

And other than that my job is to rest and heal.  She does all of the rest.  Unbelievable.  And she manages my medications.

When I met her, I saw this in her.  She was the same way with her family and with her work.  It comes naturally, but that doesn't mean it doesn't require great courage and energy on her part.  She does it all cheerfully.

I can't imagine how much more difficult this would be without her.

I am a long way from "well."  And I have this pesky side-effect of an irregular and rapid heart beat that needs to be brought under control.

But my heart is all healed, according to the surgeon.  It heals quickly (probably because there is a good oxygen supply to it).  The sternum takes forever to heal.  And monitoring the side effects to see what kinds of interventions are going to be needed on an on-going basis will require months.

But I am alive and I no longer have a time-bomb in my chest.  I am so fortunate and so grateful.  I will get past this, and then we can return to our lives with an increased likelihood of being able to have more of a future together.  We want to see a bunch of grandchildren graduate from high school.

Managing the pain of open heart surgery

I expected pain after my open heart surgery.  I knew the surgery would involve cutting a lot of tissue and bone.  I wasn't too worried about it, just knew it was something I had in my future.  Aren't I the brave one, huh?

Well, the future has not disappointed in that regard.  There has been pain, a lot of it, constant.  "Knowing" something intellectually like I did before the surgery is quite a bit different from 'knowing" it as a current experience.

All I can say, is "wow."

When one thinks about managing pain the first thought of course is medicines.  Mine too.  But I also knew that there were other strategies.  One strategy is to re-frame the pain.  Instead of viewing it as bad, for example, to view it as reflecting the fact that I am alive.  So, the pain I have experienced in the past week is the trade-off for being able to stay alive longer. Which would I choose?  To be dead now and feel no pain or to feel this (temporary) pain?  Keeping that in mind helps.

Another strategy I knew would help was to have everything else, to the extent possible, be under control.  Have my life organized.  Don't leave a bunch of unfinished stressors.  So, Vicky gave me a haircut two days before surgery.  That may seem like a small thing, and ordinarily it is, but feeling like my personal hygiene was under control helped.  Our Nuestra Casa home in Mesa had a leaky roof.  We contracted with someone who completed the repair two days before the surgery.  Now I don't have to worry about that.  It's under control.

I didn't want to get sick before my surgery, so for the two weeks prior to it Vicky and I wore masks whenever we went out into public, and we limited out public trips by buying groceries, etc. before that.  We wore latex gloves whenever we went outside, and used lots of Purel.  Who knows whether I might have been OK without doing that, but I went into the surgery knowing, to the extent possible, that I had not been exposed to any viruses.

Us at the airport flying back here from Mesa:

"Keeping the rest of my life under control" means "Vicky going the extra mile for me."  We work as a team on this.  We try to use the old phrase about work, "only handle a piece of paper once," as our motto.  Keep up with things, get things done right away, that kind of thing.  For this current ordeal the principle has served us well.

Medications:

While in the hospital I used three pain relievers which, when I reflected on it, were a strange combination.

It's odd to think about the fact that one of my most important medicines is an over-the-counter one:  Tylenol.  In fact, it is the base pain reliever.  It is actually a highly potent drug.  One of the staff at the hospital said that if the FDA knew then what it knew now about Tylenol (in terms of strength and side effects) that it would not get clearance to be an over the counter medicine.

The second was Oxycontin.  More on that later.

The third was shots of Dilaudid.   Dilaudid is an opiod derivative.  I was told it was many times stronger than morphine.  I got a few, not many, of those shots while in the hospital.  When the nurse came to administer it I violated one of my cardinal rules for being in the hospital----That rule was that I was NOT going to make captive nurses deal with old man humor.

But I couldn't help myself, I was in pain, under the control of drugs, just had open heart surgery, and am a special person. Anyway, my old man humor was to start singing the Cole Porter song:  "It's delightful, it's delicious, it's Delaudid!!!!

I'm sure the staff was sorry to see me discharged.

So, now, at home, I am using Tylenol and Oxycontin, doing a lot of reading about both kinds of medications.  One an over the counter drug that a child could walk into a gas station and purchase, and the other a controlled substance that is so dangerous that to get it you have to physically walk into a pharmacy carrying a paper prescription.  Doctors can't just phone the prescription in for you as they can for all other kinds of medicines.  These two medicines couldn't be more different.

Our strategy is to deal with the pain by taking close to the advised dose of Tylenol (but staying shy of the upper daily limit) and taking Oxycontin only at night so I will get a good night's sleep.

It seems to be working. 

(If by "working" one means "making things barely tolerable until my body heals.")

I had, of course, like most others, been following the problems associated with Oxycontin, in particular the almost unbelievable numbers of people who are using it as a recreational drug.  From what I have read, though, the problem is not Oxycontin or the maker (Perdue Pharmaceuticals) but, instead, the problem is that it is just this era's drug-to-abuse of choice.  Before that it was Meth, before that it was crack cocaine. Before that it was Heroin, and goes on and on. 

To abuse Oxycontin one has to take active steps to make it addictive,  That is, it is a time-release pill.  To get a high from it, one must pulverize it and then either snort it, or swallow it, or put it into a liquid form to inject it.

When taking it in an unauthorized manner makes it addictive, people take more and more of it, and experience withdrawal when they stop.

One thing I am pleased about regarding my care at Virginia Mason is that the physicians there are not going to make me pay for other peoples' abuse of this medicine.  It is highly effective.  I am allergic to codeine, so don't have that as an option.  And I have no history of illegal drug use.  I have taken Oxycontin in the past, after other operations, and had two reactions to it:  (1)  it worked, but I only needed it for a short time, and (2) I did not feel any type of "high" or "euphoria"  from it.  Same this time.  It gives me about as much of high as do the laxative pills I need to take.

Pain is not a growth experience.  I don't believe it should be thought of as something to just "tough out."  My lungs are an example of this principle.  During the operation my lungs were deflated.  Then several hours later they were inflated.  Imagine your lungs as a deflated balloon.  When they are reinflated there are still tiny sacs that need more inflation.  I have a breathing tool (Voldyne 2500) to help me reinflate those sacs.

The problem is that to use this breathing tool means drawing in a big, deep breath.  When I was feeling the most pain I could only draw in a medium sized breath until the pain would become intolerable.  When the pain is managed, I can inflate my lung sacs more.  So, having my pain reduced leads to better healing of my lungs.

I also need to walk as much as I can tolerate.  This is easier to do when my pain is somewhat managed.  The medicines give me more space to move my body, which is important for healing.

Upon discharge from the hospital, my instructions were to walk as much as I could tolerate.  For this, I am using another tool:  My Fitbit!  I am adding 400 steps/day and no more.  I want to build up slowly.  When the weather is nice I can walk around our driveway.  When it is rainy (most days) I do laps inside the house. 

Not only are there pain medicines, but there is a large collection of other types of medications that need to be taken in the morning and others in the evening.

Boy, do I ever depend upon Vicky for all of this.  We  have a process for the medicines, for example,  that keeps everything on track.  I am so grateful for her.  I'll be saying that and saying that for many years.  Taking these medicines is a time when it is good to engage the obsessive-compulsive side of you.  Do everything precisely as prescribed.

Maybe not for other people, but for me the experience of being under anesthesia affects my short-term memory for quite awhile after the surgery.  That is something I noticed with short, orthopedic surgeries on my foot.  In addition, I am taking Oxycontin.  And I am in pain.  Add all of those factors up and I am not in a good position to be able to accurately monitor my medicines.  I don't know how someone would do it if they lived alone.  Or if you didn't have not only a capable care-giver but a willing one, like I do. 

Vicky had a funny experience when she picked up the Oxycontin at the hospital pharmacy in preparation for my discharge. 

When she got to the pharmacy she found that she needed to provide a street address.

Well, this was awkward with all of the focus on illegal use of Oxycontin as a "recreational" drug:  The reason it was awkward is the street name where we live:  Zig Zag Lane.

Now, something I didn't know until after I bought this home in 2006 was that Zig-Zag is a type of paper used to roll marijuana cigarettes.  I wasn't even all that aware of what street the house was on because there was no street sign.  Apparently people living on the lane just gave up erecting a street sign because it was always getting stolen.  I wonder by who.

So, imagine the discomfort of picking up a prescription for Oxycontin and having to write down that you live on Zig-Zag lane. "Oh no.......we aren't getting the Oxy for recreational use.  I know we live on Zig-Zag lane but it wasn't named for the paper but instead because it zigs and zags.......honest!"  Nobody gave her any grief about this, of course---they were very professional---but we thought it was funny and could only happen in Washington State.

I will be so glad when I am beyond this experience of pain and discomfort.  But I can tolerate it, with her help, while my body heals itself.  Without her running interference for me and taking care of day-to-day details, I would need more pain medicine I am sure. She is what is keeping everything under control so I can use my resources to get better. 

My first night in the hospital after open heart surgery

I spent the first night after surgery in the ICU.  I was alert enough to stand about 10:30 p.m. and then went "right to bed."

In a hospital bed, on my back.

I didn't have any sleep medicine, because I hadn't anticipated that I would need any.

After being zonked out on medicines for most of the previous day one would think it would be quite easy to sleep.  But then I learned that being zonked out on medicine is not, physiologically, "sleeping."  Your body still needs the same amount of sleep.

Good luck with that, Dan!!!!

I had wires and tubes sticking out of me,  One tube in the wrist, one tube in the neck, and one tube in the you-know-what.  I had what seemed like dozens of little stickies going to this monitor or that monitor.  I had a monitor on one finger.

But the worst was that our dead cat, Jack, was back, haunting me, kneading my legs, every few seconds.

"Jack" was actually a device that applied pressure to my calves.  He wasn't really my dead cat (an animal I adored by the way) or Jack the Ripper.  I was only kidding.  This is the best photo we have of one:

It would inflate and deflate, and basically feel like Jack, who liked to knead my legs too, even though I always hated it when he did that.  I liked Jack.  But my artificial "Jack" was a nuisance I couldn't get rid of.  It was necessary because it prevented blood clots.  When Jack used to knead me I could just wiggle my leg and say "go away, Jack." (True confession time:  Sometimes I said other things).  But ghost Jack wouldn't go away.  I "kneaded" him (har har)

With my ghost Jack, it would inflate about every minute, on alternating legs, then deflate.  When ghost Jack deflated he made a small whooshing sound.  So not only was ghost Jack kneading me all night long, but he was whooshing when he did it.  Every....minute....all.....night.....long.

My throat hurt.  From the breathing tube that had only recently been removed.  Ordinarily I sleep on my stomach and sides, but the only position I had for sleeping in the ICU was on my back.  To turn over would have been impossible and wouldn't have been smart---I would have had to use my arms which would have put a strain on my incision.

And there were all those tubes and wires.

In order to move even a little bit onto my right or left side I had to call for help.  Two people would come, grab a sheet that was under me, count to three and then at the same time hoist me in the right direction, and put a pillow behind me to support me.  That was better than nothing and was appreciated.  Even in my drug-addled state I also could see how much physical strength it required from the nursing staff to do this.  They were each lifting about 80 pounds.  I wonder whether doing push-ups is a part of nursing training.   My admiration for hospital nursing grew during this whole experience, and it started off high to begin with.

The first time two of them were leaning over me one said to the other:  "on the count of three.  So I said "is it one, two, three and go or one, two, go on three, assuming the two young people doing it had even heard of Lethal Weapon.  They looked at me like I was in some kind of drug addled state.  

It was obvious that attempts were made to minimize the disruptions to my sleep.  And, in fact, the whole set-up was noticeably better than a hospital (different hospital) stay I had about 8 years ago, where I was for only one night.  That is even the more remarkable when I compare the two operations I had for the hospital stays.  The previous one was elective, and didn't involve anywhere near as much surgery in terms of time, "systems" affected, etc.  This one was an assault. 

But, as I have mentioned in other blog entries, only people who are alive get to have a crappy night's sleep.  I'll take my crappy night's sleep.

I was hooked up to several machines.  I was told that there is a person who sits somewhere doing nothing but looking at screens.  This person's attention to the monitors isn't erratic in the slightest because she/he does nothing else.  Looks at a monitor, looks at another monitor, looks another monitor, etc. etc.

That doesn't even include my night-time nursing staff who were also monitoring me.

And if that wasn't sufficient, the hospital also allowed Vicky to sleep in the same room as me.  Her accuracy rate of "problem" or "no problem" is not going to be as high as will be the accuracy rate of the professional staff there, but it is greater than zero.  One of the principles of psychological measurement is that if you have a psychological test where each item has only, say, 80% accuracy, if you have 4 items on this test you are not going to be as valid in detecting a problem as you would be with, say, 10 items.  In other words, even though Vicky's intuitions about whether I was experiencing something serious would not be as accurate as the judgments (based upon training and expertise) of the professional staff, her input would increase the overall validity of "Dan's in trouble."

Not only that, but her "inaccuracies" would likely be false positives.  In other words, she sees something on the monitors that she believes could be a problem when there really isn't one.

She would alert the nursing staff when she was worried about something.  They would respond immediately and check things out.  And each time told her that everything was OK.

In other words, and this is a crucial point for me, the hospital staff could have regarded her as a nuisance, or could have written her off as being just an "anxious spouse," etc., because her ability to add to the overall prediction of me being in serious distress wouldn't be as high as theirs is.  However, to see the big picture, that even with her inaccuracies she is adding to the overall validity of monitoring me requires a big picture understanding on the part of the people in charge.

The other thing that it does to have allowed her to be there through all of the nursing process is that got informal "training."  In a few days I would be released to come home.  There would be no nursing staff.  How do they make her into a more accurate observer and monitor of me?

A couple of times it appeared to Vicky that my oxygen levels were low and that my blood pressure had dropped, and she called the nursing staff who validated her observations.  They had already received an alert by that person who was monitoring patients, but machines can malfunction, even with all of the fail-safe mechanisms the hospital had.  Rare, I'm sure, but all machines can malfunction. 

So, how do they make her into a more accurate observer when I come home?  Answer:   By "training" her.  She received several "trials" comparing her thoughts to the thoughts of the professionals.   She is a more accurate monitor now than she was before the surgery.  She learned.

So, that first night I got a really, really crappy night's sleep.  And Vicky got virtually none--instead sitting by me and watching monitors.  I had no idea this was happening.  But the fact that when she saw that this is something she was allowed to do she did it.

I don't think a Target gift card is going to be enough to express my gratitude for her.  Buying her the entire Amazon river might get me closer.


Me the next morning, 24 hours after surgery, and after my awesome night's sleep:

My First 24 Hours with Dan after his open heart surgery

This is me, Vicky, the other half of Dan and Vicky.

I have had a very hard time writing this.  It is an awful time of our life and a very wonderful time.  It is life, real living, and staying alive.  This is my story about the first 24 hours when Dan, my love, got his new pieces for his heart.       

I had been here before, in a way.  The hospital sounds and the smell on my hands from disinfectant flashed me back to a time in my life when my sister had surgery for ovarian cancer, and I lived in her hospital room with her for three days.  It was all so familiar, but this time it is my husband, the love of my life, on the hospital bed.

He is not moving, there is no indication that he is alive, except for his chest rising and falling.  But he is not breathing.  His chest moves only because the breathing tube is sending air into his body.  I hear monitors beeping and watch them endlessly draw lines with random bumps and hills. I do not leave his room.  I stay beside my husband watching his face, the rise and fall of his chest, and the monitors that are charting his heart beat, blood pressure, and oxygen level.

The four hour surgery is over, and Dan is in the ICU.  It is only 5 hours since surgery started and I am by his side, watching over him, willing him to breathe.

I will watching every breath of his, like this, for another six or seven hours.

There are numerous IV lines entering my love's body through his arm and his neck. They too are keeping him alive with a constant flow of liquid and medicines.  And then I see a sign, "Temporary Pacemaker", and realize that the RN that is monitoring all this equipment is working my husband's body like a video game to keep him alive.  When his heart slows down she speeds it up with the pacemaker, when oxygen is low she increases the flow, blood pressure too low or high she increases the appropriate drug going through the needle in his neck.  This RN, along with all the machines and drugs, is keeping my Dan alive.  She is also concerned with my comfort and explains what is happening from moment to moment and how to read the monitors.

And this RN lets me sit next to Dan and lets me talk to my husband.  She and I are spending the night here with Dan.  I'm not mentioning her name because I don't know how to contact her for permission.  So I am using "The RN," but she's not just the "RN" for either Dan or me.  She is in charge of the lifeline, doing a masterful job. 

I talk to him constantly, telling him I am here, that he is alive and that he kept his promise to me, that his coloring is good, and that I will be the first thing he sees when he wakes up!  I tell him everything the doctor said about his surgery and about Jessica and Jules staying with me all morning and afternoon and keeping me sane.  I talk on and on even though I have been told that he can't hear me and won't remember.  I know Dan and I know he can hear me and I don't care if he remembers what I say.  I know that he will live and start breathing on his own if I stay next to him and keep talking to him.

But deep inside me I also know that he may die.  That something inside his body may break or just stop working and he is too fragile at this time to live if this happens.  I talk to him and watch him and keep this unthinkable thought at bay.  I am afraid that if I let this thought surface, it may have power.  So I watch him breathing and talk to my love.

After several hours the doctor and RN say that Dan has to wake up and start breathing on his own.  But he is unresponsive.  They give him drugs to wake him up and still an hour later the breathing tube is what is keeping him alive.  He is not breathing on his own.

Suddenly Dan reaches for the breathing tube that is down his throat, and I grab his hand and tell him that he has to leave the tube alone and start breathing, take a breath.  He falls back into his drug induced coma and I help to strap his hand down so he can't pull out the tube.  But I talk to him, again telling him that he kept his promise, that I am here, explain why the tube is in his throat, ask him to start breathing, plead with him to start breathing. The RN tells him to breath.  I gently touch his forehead.  Dan gasps for air and his eyes briefly flutter open and he looks at me.  He is breathing!!!!

An RN arrives whose job is to remove the breathing tube.  Dan is breathing on his own but seems asleep.  I watch him breathing, his chest moving, and hold his hand, and am joyous inside.  Dan is breathing!

Much later I feel his body slightly shift.  He opens his eyes, looks at me, and mutters hoarsely,  "Hi baby."

The RN starts an assessment of Dan's mental state.  He does not know the month or year, but does know he is in the hospital, and when she asks why he is in the hospital he says, "to get a new heart." Then the RN asks if he know who the woman is who is next to him, and he looks at me and mumbles, "my treasure, my wife."

It is hours later and the doctors say that Dan should sit up sometime tonight and dangle his feet over the side of his bed.  He is still drifting in and out of "sleep" or consciousness.  No one believes that Dan will "dangle" tonight, but they keep asking if he wants to "dangle" now.  I can tell that he is becoming more my Dan because he starts to grin when the RN (in all seriousness) asks, "do you want to dangle?"

Dan asks if he is supposed to sit up and when he hears that the doctors want him to, he says OK he will sit up.  And with some help,  he sits up and dangles his feet.  But that is not enough for Dan, because now he wants to stand up.  So up he goes, leaning forward and using his special red "heart pillow."  I am taking pictures, in awe of my husband. Standing is not enough for him, he now wants to walk, but I can see his blood pressure is dropping rapidly and so can the RN, so he is told to wait until tomorrow to walk.  Dan begins to shuffle in place, saying, "see, I can walk".

It is 10:30 p.m. and Dan is (sort of) walking in place.  Just 14-1/2 hours ago surgery started. The doctors had put him on a heart and lung machine, deflated his lungs, and replaced his aortic root and aorta valve, restarted his heart, inflated his lungs, and had him on a breathing tube.  He went to "sleep" easily, but was hard to "wake" up.  And now he wants to walk, just over 14 hours later.  My amazing Dan!  Of course the pain has not set in yet like it will later.

All night long he sleeps restlessly.  He has on an oxygen mask and I can hear the oxygen flowing in as he breathes.  I sit beside Dan and watch him breathing, watch his blood pressure, oxygen level, heart rate and I call the nurse when any of the monitors appear abnormal.  I hold his hand and watch my husband sleep and breathe.  Every time he wakes up he asks what the surgeon had said, how surgery went, and I tell him all that had happened this first day and night after surgery.  He does not remember any of this.

Morning has broken.  Dan is alive, 24 hours later!

Our goal is to do the STP next year, in July of 2019.  And as he lay "sleeping" earlier that evening, with the breathing tube, I told him he had done the first step to ride the STP:   He had made it through surgery and has a new heart.  Now his next step is to start breathing, and he did this.  I know that Dan heard me, that he knew I was with him, beside him, and that he started breathing for me, for us.

Coming out of anesthesia after open heart surgery

I have had other surgeries, but they didn't prepare me for this experience of coming out of anesthesia.

One thing that was different for me was the experience of going under with anesthesia,  Usually I could remember a tingling and light-headedness.  Then I was zonked.

But this time what I remember, corroborated by the people in the operating room, was that one moment I was "there" and the next I wasn't.  I had been given a medicine to relax me, but it did its job so well that I lost consciousness.

I believe that everyone thought that a few hours after surgery I would be alert.  At our appointment the day before our surgeon said he would see me in the morning, Vicky around noon, and me late afternoon.

But I didn't start regaining consciousness until 8:00 p.m. or so, far later than anticipated.

What it meant was that Vicky had to sit with me for hours while I laid there looking awful beyond words, willing me to "please wake up Dan."

Finally, I did.

And when I did the first thing I saw was her and the first voice I heard was hers.  As a gift before surgery I had given her a 45 rpm record pressed in the 1980s by Boris Gardner.  The song is "I wanna wake up with you."  We love dancing to it:

Here is what she had to look at for several hours.  Talk about a tough, strong woman.  If anyone reading this wants to stop reading this at this point, I'll understand.  The photos are hard for me to look at, but they serve a purpose in our lives. 

(by the way, having these photos made was a joint decision, and a decision predicated on our belief in a good outcome.  I wanted to know what had happened, and we wanted to know, as a couple, what we had been through.  That was the right decision for us, but might not be the right one for everyone).

A far cry from how I looked the previous time she saw me:  A dork in a space blanket.    Wearing a shower cap.  We both laughed.




The surgeon had left orders that I was to dangle my feet off the side of the bed.  This was getting close to 10:00 p.m.  I hadn't slept well the night before the operation, and we got to the hospital very early.  (being under sedation is not "sleeping," although the phrase "go to sleep for the operation" is used to describe it; so I hadn't slept for 17 hours at this point).

Here is the night staff sitting me up.  Took three of them.  They obviously knew what they were doing.  Gentle, strong hands, and comforting words.  They, and almost staff who we got to know at Virginia Mason Hospital, have really fit that song Simple Gifts ('Tis a gift to come down just where you ought to be.")

I have no memory of sitting up or standing, even though I look (fairly) alert in the photos.  

 I asked if I could stand up, and was allowed to:

I had all kinds of tubes sticking out of me, and monitors.  Not surprising, but I didn't get a good night's sleep that night either.  "Good night's sleep" is simply not possible when you are in intensive care, even though the staff did all they could.  Sleep mattered to my medical staff, but keeping me alive took priority.   Good decision as far as I am concerned.  

I am writing this 8 days later.  The most salient memory of that day was waking up and seeing Vicky and hearing her voice.  Almost all of the rest is a blur, lost.  She stayed that night, in the room, and that was the best night we have ever had together.   She was with me for every minute of the five days I was in the hospital.   

Open heart surgery: When life throws you curve balls.....

Go down swinging.



Today is Tuesday.  Last Thursday a surgeon cut an 10-inch incision into my chest, and used some type of device (I don't know what and I DON'T want to know what) to break my sternum and spread the two sides apart.

The purpose was to gain access to my heart so he could replace two pieces that would result in my death sometime in the next few (actually, very few) years.  And I wouldn't know it was coming in time to get to a hospital.  The aorta would rupture and I would lose consciousness immediately.  There was nothing I could do to prevent it.  It was going to happen.

Our decision was a weighing of the following:  (1) When the measurements in my aorta reach a certain level, my probabilities of dying from the aneurysm bursting are greater than are my chances of dying from having the surgery,  Has that threshold been met?  (2) Since I might live for 1-5 years without the surgery, is what I have to live for after five years worth it enough to me to risk death on the operating table now?  (3) Do I want to be in control of my own death?  (4)  Now that I know that I have this time bomb in my chest, could I hurt someone else with my death since it could come when I was driving my family, wife, grandchildren, etc.?  And if it happened while driving, I might crash into another car.   That seemed to be a very unfair thing to do to other people.   (5) When is the best time in terms of the other aspects of my health and strength that would affect my odds of survival?

Answers:  yes, yes, yes, yes, and now ( I am otherwise in excellent physical condition, which is a good predictor of rehab).

I want to say something about #2 above.  It was a huge part of my decision to proceed.  I want to spend more than five years with my Vicky.  I want to be alive for her when life throws her curve balls, and I want to experience the thrill of life that I have had with her for the past seven years.  We are not done.

I am fixing my physical heart because of my valentine heart. Corny but oh well.

When I was in the operating room waiting to be sedated, I was thinking about how I knew I could just call the whole thing off, probably live 1-3 more years, and maybe squeeze in another two (big maybe, actually). And in that cold room, with 10-15 people standing around in green gowns, hard to see that they are even people because they were all wearing masks, I was frightened.  I knew that in a few seconds it might all be over.

It had all been so sudden.  It has felt as if I had gone from having no serious medical issues to needing close monitoring to needing surgery very rapidly.   Other people have similar things happen to them, and everybody eventually dies.  And I am fortunate, very fortunate, that what I have that could kill me is something that can be completely eliminated from my life.  But it was still head-spinning how rapidly my health status changed.  We had just finished our 7th STP, and been doing hard (and long and hilly) rides since then.  We were in the best shape ever. And I could die from heart problem in the near future?  Hard to grasp.

Everyone was professional in that room, and nice, but it was a group of total strangers.  Even my surgeon, who I knew, wasn't there yet, and the anesthesiologists I had met that morning weren't there.  All around this very large room was equipment, screens, things hanging from the ceiling.  The sounds of things clanging onto tables.  I was close to being in a state of disbelief about why I was even there.

Except I knew why I was there.  It was that curve ball of a diagnosis of a death heart, a diagnosis that seemed to have come at me out of the blue. That's why I was there.

I actually thought about it this way, to make myself feel better: If I go down, I wanted to go down swinging.

It sounds very dramatic, I know, but that's how I was feeling right then and what I was thinking.  I didn't want life to come at me--I was going to come at it.  I didn't want the people I love to be afraid when that time comes at them.  How do I show them to not be afraid when it happens to them?

Just turn around and face it. Go down swinging.  Don't just stand there taking a called third strike. 

So, I stepped up to the plate, scratched myself ........(OK, Dan, you are getting carried away by the metaphor)

Another consideration was rehab.

Rehab was one of the major motivations for purchasing Nuestra Casa, our home in Arizona.  After a few weeks of recovery from the surgery we will return there where I can be outside every day doing 3 mile walks along ponds, and be a 10 minute walk to the swimming pool and gym.  In the winter no less, when the weather is perfect!

We can also start riding bikes in the area since it is a gated community and everybody drives slow.  Streets are wide.  In our little home we have an area for dancing and for ping pong, our other two activities.  We are short drives from some of our favorite camping and hiking spots, and can do that when I am strong enough to get into and out of the camper. And medical services are within walking distance, instead of taking up the better part of a day just getting to and from appointments,  We both immediately knew it would be perfect for someone needing a few months of rehab.

Fortunately or unfortunately (or both), I didn't have the "help" of feeling discomfort and knowing that I would feel better after the surgery.  I felt no symptoms to motivate me.  It was not diagnosed on the basis of a symptom pattern I was presenting to a medical professional.  Instead, it was diagnosed because of a medical professional who did extra things at my yearly meeting with him, extra things that he was not paid to do. More on that later.

But, man, this operation is not for sissies.   More on that later, too.

Right now it is 5 days after the completion of the operation.  I have just arrived back home on Whidbey Island, looking out at our woods and birds as I write this.  It is fall, so the flowers are gone, and the colorful tropical birds that swarm like bees are back where it is warm.  I saw a Pileated Woodpecker (one of our favorites) at the bird feeders I filled last week, greeting my arrival back home and thanking me for the food.

If there is a more beautiful place to recover than here I don't know where it would be.  But the trip getting home today from the hospital was tiring, tiring, tiring.

I'm alive!  I am so fortunate.  So very fortunate.  When I experience a wave of pain or of exhaustion I make myself remember:  Nobody forced this on me, I chose it. 

I feel like I was thrown a life curve ball because, even though I have been pretty good at the eating and weight and exercise thing,  I nevertheless ended up with a life-threatening heart problem.

And, tonight, I feel horrible.  I hurt everywhere.

But I also feel great, because I know that all of my pain and exhaustion is because I swung at that curve ball.

I hear the crack of the bat as it makes contact.  Ball is in the air, the crowd is standing, and it is looking good!