A sobering status report 10 years in…

Since near death at the end of 2006, I have been under the excellent care of the OHSU Heart Failure and Transplant team. Over the years of ambulance rides (3), emergency visits, hospitalizations, catheterization2 (13), surgeries (3), defibrillations (8)and weekly chest pains, I’ve visited that heart team at least once a quarter–at their insistence.

But for the last year, I’ve avoided it. Yesterday was my first trip back up to the 9th floor in 14 months. Partly out of an awful experience last year with a newer member of the team. Party because I just needed to live outside the heart failure medical bubble for a while.

mikejudylavendar

I have to say, it’s felt good.  Even though I have had some hospitalizations and surgeries, none have been directly heart related.

But I’m 65.  I’m having some difficulties. My chest pains have become more severe.  And Judy and I have questions. Fortunately I was able to meet with a superb cardiologist who a few years ago changed my life by giving me clear parameters within which I could exercise and train (I’m an old runner, marathoner). For the next year or so I slowly worked my way up to running for miles in these SW Portland hills.

A combination of knee injury and sudden fatigue + losing my breath set me back to a much more sedentary life. Walks in the hills, hikes, walking from the car to the grocery store door…any of these can require stopping for rest and to get my breath back.  It’s weird. And disappointing.

We spent 3 hours at OHSU cardiology. Some waiting. Most in discussion and exam. It was illuminating, sobering and hopeful. Here is my status and the new information we gathered:

Heart failure: the heart cannot pump enough blood and oxygen to support other organs. There are 4 classes of heart failure. I went all the way to IV back when I was near death (with an Ejection Fraction of 11% where normal is 55% to 70%). Between medication and an experimental open heart surgery (Left Ventricular Remodeling where the heart is literally cut in half and re-shaped), I have done well.

A Heart Failure diagnosis has about 40% mortality rate in the first year. About 50% in the first 5 years. Heart Transplant remains the ultimate treatment in Class IV. So I am kicking ass. But I do have a terminal illness and it’s trajectory is certainly bending downwards.

Our questions, though, were “How ill am I?” “What are my parameters for activity and excercise?”  “Am I still in Heart Failure?” “Am I still heading for transplant?” “What can we expect?”

Tough, tough questions. The fundamentals are that I have Class III Heart Failure and I will never get better than that. I have Ischemic Cardiomyopathy, Coronary Artery Disease, Congenital Heart Disease and Ventricular Dysplasia…weird heart rhythms like Bigeminies.

As my doctor said, “there is a cliff out there. And you want to know where the cliff is.” Yup. We don’t really know. And we don’t know if my quick fatigue and breathlessness at exercise is from just being out of shape or because my heart system just can’t handle it–or a combination of the two.

Action:  my last cardio-pulmonary test was 4 years ago. Jill wants to get one now and repeat it every year. This is where I’m wired to a heart monitor and exercise to failure or heart danger so that we can really determine the parameters for activity. The new data from this test will also help determine the scope of damage and function of my heart and give us window into the vicinity of my “cliff.”

I’ll get an Echocardiogram the same day to further determine my current Ejection Fraction and pumping/circulation status of my heart.

I’ve tried to include links for those who want more information, especially heart failure patients who follow this blog or are looking for information.

To those patients, if (like me) you came home from your initial heart failure diagnosis and Googled it to find your chance of dying in the coming year or so is about 50%, I say this:
Enjoy life. It sounds eerily simple and trite until you have a terminal disease. I’m not talking about resigning or throwing in the towel. I’m talking about real freedom.

Stop all the editing. Choose people who bring light to your life and let go of those who do not. Let your funky flag fly free. Try anything. What, truly, do you have to lose? And love without constraint or conditions.

But work for more days. What you eat, what you drink, what you do…Even Class IV Heart Failure isn’t a fait accompli. I was done. People came to visit and, in their own ways, say thank you and goodbye. I grieved for all that I would miss.

But I’ve lived.  10 years for goodness sake.  Medications meticulously followed. Good healthcare and reasonably wise home care. A universe of incredible friends. A granddaughter!

If you’ve come to this blog through a search on Heart Failure, rejoice.  You’re alive. If that isn’t enough, reboot. We are above ground, my friend.

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The next day…

Many Summers ago I was backpacking with my boys up in the Sierra Mountains. At one point in late morning, we were scrambling over a rocky, granite patch with mosquitoes clouding around our faces, arms and legs when I came upon a sudden drop, a mini-cliff if you will.  My forward motion, goaded by my backpack, didn’t end quite soon enough.  Where I intended to stop I glanced down over the sharp edge and mentally noted that it was not only a fair drop, but that there were a series of ledges cascading quite a long ways down.

As my body and pack pushed me that one extra step into the void the fact that I was going to fall down the cliff registered clearly but impassively in my mind. I noted, too, that at the least I would probably break some bones bouncing down those boulders.  Might even die, too.

Still within that quantum nanosecond I thought about Brian and Gary and Brian’s friend, Tim, who had joined us on this odyssey.  How would they handle me laying in the wilderness broken or even dead?  I considered the weddings I’d be absent.  The graduations.  The cars they’d buy and drive that I would miss.  There was even squeezed in a very, very brief imagining of their conversation as they stared down the cliff at my body.  It was odd that they didn’t cry.

As my body began to actually fall downwards, those screens went blank. I hadn’t tumbled forward.  Instead, I’d simply walked off into air the way Wile E Coyote did so many times in the Road Runner cartoon.  Traction-less legs and feet pumping, downward motion replacing forward motion.  I felt myself pulled straight down.

Gone was worry or anticipation.  I was on automatic pilot.  My brain, the deep gray black of a an off television, reverted to its reptilian center.  Basic, primal command and control of my body.  It must have cataloged the image I grabbed as I looked down the cliff at first fall, sort of like a GPS acquiring the necessary three satellites and instantly orienting itself in all three dimensions.

Brainstem and cerebellum plotted a path down the boulders, placing my legs and feet to perfectly tap and bounce down the cliff much like I’d watched blue-belly lizards scamper down the shale cliffs of my childhood. Suddenly I was standing at the bottom, looking up.  Heart pounding.  Feet secure.  Legs trembling.

A near miss.  A very near miss.

I looked up at the boys staring down, not knowing whether they were aware of how close my death had passed.

Yesterday at OHSU was like that.  We didn’t see it coming.  The details, the reality of my fragile heart, pushed us both out over the void.  It had been there the whole time.  But the life we carry has just kept us moving forward–aware but not immersed in the threat.

Today we are standing once again on the ground.  We saw the danger.  It was in our face.  Our instincts, however, turn us to the sun and the light and to laughter.  The dishwasher still needs to be unloaded.  Prius oil changed.  Dirty laundry piled up.  Dinners to attend.  Business to do.

Reality is a funny thing.  One moment it shuffles along.  Another it hurls us into the abyss, but just as quickly sets us down once again in the beautiful meadow of our lives.

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Routine tears

Easter Sunday

Judy and I were a bit shaken at OHSU’s Gabriel Park Clinic this morning. I went in mostly for some routine checks on a lump on my instep and pain on the bottom of my foot. I also had to re-up my medication prescriptions. We were also following up on the EKGs and the Angiogram that I had a couple weeks ago. Routine stuff.

When Kristen started to go over my heart condition, things got real. Weeks earlier, in the hospital, still groggy and Judy and I both weary and rattled from the morning’s medical processes, a couple docs had dropped in to give us some results. Those were mostly “not too much change” from 2012: “some occlusions that could not be treated with interventions in the cath lab…” and “reduced systolic function in right ventricle; reduced left ventricle ejection fraction 40%”

Today’s report began with the admonition that I am “at high risk” and should “…get to ER on any chest pain that requires more than one nitroglycerin tablet.”

Um, I told her that I would end up in an ambulance several times a week if that was my new metric. We agreed to leave it at 3. But Judy and I had both heard her loud and clear.

She also went over my test results in more detail, pointing out occlusions and blockages all over my heart that ran from 60 and 70 percent up to 90% at the point of my grafts from 2007. The grafts themselves are approximately 50% blocked.

With all this information along with the existing dead tissue on my left ventricle and the newly discovered right ventricle damage, it began to seem pretty scary.

I saw the tears in Judy’s eyes. I have to admit it scared me. A lot. Not her tears, but my health status. With my genetic coronary artery disease, cardiomyopathy and heart failure, there’s not a terribly lot to be done.

The good news is my diet and lifestyle have kept much of the heart failure at bay, and the advance of coronary artery disease has been somewhat stalled.

Still, today I feel the weight of this terminal illness and am hyper-aware of my heart’s capacity to fail. The LAD is the source of what we call “the widow-maker.” I have my defibrillator. It’s gone off before and saved my life. That is not as comforting as it sounds, however.

Judy and I live with “saying goodbye” every time a new farm animal climbs on my chest. Curled on a chair, hands on my chest, my body turning white and then gray….I don’t know how Judy can sit through it.

We look at each other, aware that this could be it.

I think I’m doing all the right things. I can improve and I will. We will explore medical options as soon as I can get in to see my cardiologists. I do wonder if, with my coronary artery disease and ischemic cardiopulmonary, if I will ever end up being a heart transplant candidate. I guess that’s one of the questions we have.

In the meantime, this brief but intense brush with the reality of my mortality will pass. We will return to the life of joy and madness and laughter that we love.

We do have to be sober about what I can and cannot do. I am very, very susceptible to fatigue. My heart is a bit like your two-year old smartphone battery. It doesn’t hold a charge for long and it takes a lot more time to charge it back up.

Some clients or work or projects or efforts might need to be cut. We shall see. I desperately need to keep charged enough to play with my granddaughter. Priorities.

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Out of breath…

So I’ve reached a point where walking from one room to another can leave me out of breath and tired. It’s SO weird. Everything else is working fine. If I’m just standing here at the computer (I use a power desk almost always at the standing position because sitting is SO bad for people like me…) I’m fine (unless a huge chest pain rolls in). In most meetings I can handle everything pretty well…until I get worked up and really start talking. Then I end up exhausted again.

I just finished 2 months on ranolazine (also known as Renaxa), a new drug for angina, hoping my symptoms would subside a little. Not happening.  I have never had chest pains from exertion. Never. They always come when I’m at rest. A couple nights ago, about 1:30 am while I was standing here working on a client’s project, a good sized cow settled in on my chest and it was big enough to freak me out a little.

Judy was asleep, but I snuck in and laid on the bed next to her just in case it actually was the big one. I took a nitro and she woke up. One of those weird moments where you don’t know if you should say anything (like, “Goodbye. I love you…”) and you stare at the ceiling with your hands holding your chest in…and then it lets go.

Anyways, now it’s really starting to affect my ability to do much of anything. Getting dressed leaves me breathless.

The Renaxa was kind of a last shot. Another part of my heart muscle, now right ventricle, is showing signs of dying. I’m definitely not a candidate for LVAD (which Cheney had for about a year) so my prospects are heart transplant or–very unlikely to be ready–stem cells.

After seeing Cheney speaking for a couple hours just 3 weeks after his tranplant left me hopeful that I can get cracking (oh, maybe an inappropriate term…) on a new heart! I am so ready. I’m a little afraid that, at the rate my heart is declining, I’ll be too darn sick by the time I get back on a list.

Other than that, we are living the dream in Portland and loving life! Hopefully I’ll get in to see my heart/transplant docs soon. 

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Heart winding down…

So my heart failure is finally trickling back into my life.

Walking across a room can leave me out of breath and energy…and on other days I can walk for miles!  Yesterday I could paint and get around all day and on another day I may need a couple naps to make it through.  I have a little bit of cough back.  A few hits of nitro here and there–though I’m on a prophylactic dose of nitro every day.

I haven’t been in an ambulance or ER for my heart in a couple years.  That will change soon, but it sure is nice to not look up the hill in Portland and say, “That’s my home away from home…”

So my 60th birthday is coming up July 9.  I did not think I would see it.  If you read back through this blog you’ll find me preparing for a very early death.  I suppose I still am, but it’s not as scary as it was just a few years ago.  When I’m on my 2nd or 3rd shot of Nitro, hands clasped over my chest, bent over and grimacing in pain…well, you sorta don’t know if “this is it” or not.

It comes rudely.  Never from exertion, as I tell my new doctors, but when I least expect it.  Laying in bed.  Watching TV.  Working at the computer.  And each time–especially when it’s really big–I think, “Is this it?”  I note what music is playing.  Where Judy is.  What I am reading.  What I am wearing.  Is this the last thing?

It’s good for me to read back through my blog, which is also available as a book (Glass Heart – Lulu), to remind myself of my commitment to self-honesty and to transparency in this blog.  As my breath and energy ebb I get closer to that edge.  It’s perspective, I know…   Like holding a business care in my hand with arm extended.  It’s there blocking a little bit of my view…but I can still see the rest of the world.  Versus holding that same card up to my eye, blocking everything.  That’s what happens with the really huge pains.  It’s definitely what happens when my internal defibrillator goes off!

My blog has been picked up by a lot of health websites, including LimeHealth.com which will be publishing a portion of it on their site when they launch very soon.

I have so much to celebrate in my life.  We have so many incredible friends.  We’re surrounded by art and music, fabulous food and wine, beervana, parties and adventures that just don’t stop.  Family that shows up and loves.  I have said since my surgery that “if I make it to 60, we’re having one helluva party!”  Well, it’s upon us!

If you’re family or friend of ours and you didn’t get an emailed invitation, my bad.  My email’s a bit massive and I’m not organized like Judy.  It’s easy to mess up and leave someone out. The party is July 9…from noon until the cops come.  The info is here: http://event.pingg.com/MikeTurns60.

Please RSVP so we know how many fatted calves to slay…

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Just a note…prognosis party called for!

I don’t want this blog to expire or go away…but don’t have anything huge to add about my physical health.  I’m sorta cruisin’ along on a slow, downward spiral.  Still pretty strong and, as long as there’s no hill, I’m good.

Chest pains and nitro occasionally.  Taking all my drugs to stay alive and starting free-weight regime to get in better shape.  It was okayed by docs and I’m finally ready to go.  I need to really develop my upper body for heart transplant surgery.

Actually did Yoga with Judy this morning.  She’s a trained yoga instructor, so I was in good hands.  Dang, it’s so much harder than I thought!  I’m so stiff…need to bend and stretch!  She’s a perfect leader…quiet, directive, watching and praising.  It was kinda nice, though we thoroughly freaked out Noosh and Maddie.  Plus, I should have vacuumed the area rug before doing the Child pose and planting my face….

Between bike-riding (we roll on Electra Townies…black with colored polka-dots that match my crazy helmut and a set of rad “Fat Franks” on the wheels), yoga and weight-lifting, hoping I will reach a physical level that will max out my chances for heart-transplant recovery and success.

Back about 16 months ago, when I stopped writing regularly in this blog, I had gotten a supposedly VERY accurate prognosis for my heart failure.  Before the experimental Ventricular Remodeling surgery I had, I took a course at Baylor University on the surgery.  From that, I get some cardiology emails regularly that a patient wouldn’t normally get.  One had the results of a study on this surgery which concluded that it wasn’t recommended.  What was interesting in the study, though, was the mention of a heart failure prognosis tool at a Seattle university that had an accuracy rating of + – 3%.  I got into the online tool and, since I had all my test numbers, plugged them in and got a date:  March 27, 2010.  Oy.  + or – 3%.

Jude didn’t want to know the date.  I pretty much stopped blogging as this was a pretty big piece of information about my health about which I couldn’t write.  But I put it on my calendar, which she shares on Google, forgetting that someday we would get into 2010 and she would see it.  She did.  So March 27 approaches.

Is it in my head?  Yes.  Am I going to “make my own reality” or manifest my own demise by dwelling on it or expecting it?  Hell, no!

But, c’mon.  If you were me and you had a date for your terminal illness, wouldn’t it be in your head?  I think I should have a party that day.  Yeah, that would be COOL.

So I’m kickin’ ass, living the dream, laughing a lot and thoroughly enjoying life with my best friend.  Every day is a good day to be alive.  Every single day.  Bar none.

Now go out there and create something!!

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Oy! There’s a snake in my leg!

 

snake tracks

snake tracks

 

 

A walk from the car to the door.  Weak legs, out of breath and exhausted.  So next week I’m going in for another angiogram, where a catheter is pushed up through my groin into the femoral artery and snaked up into my heart.  They’ll look for obstructions (I had 2 bypasses during my heart remodeling surgery 2 years ago) that might be causing my daily chest pains and then press further into the heart itself to test the pressure inside my ventricles.

I need to just put on my jammies and sleep for a day to get my energy back up.  I’m okay sitting, though really tired right now.  But any movement exhausts me and stopping every few hundred feet to rest just makes a trip to the store and adventure!

Arteries work better for bypass grafts than veins.  I have one of each and it’s the vein graft they’re most curious about.  If there is an obstruction in one of the grafts, the choice would be a stent (which was ruled out for me before) or open me back up and slap a new one in there.  I prefer the former, as I hate that whistling sound the ventilator makes in recovery….

I was planning to fly to Michigan for a couple days this week to spend some time with Claire at University of Michigan.  I wanted to be in her classroom as she taught, especially since I missed her graduation from George Washington U in DC because of heart problems.  But heart problems there are and flying right now is not considered wise.  Especially since I had two stops scheduled keeping me in the air for something like 6 hours.  After my swollen leg after Mexico I think it’s a decent pass.

So anyone who is waiting for something from me this week will need to stand down.  I need to rest in a big, big way and that includes sitting here at the keyboard.

I think this is my 11th or 12th catheterization, all of which I did fine with before and which I will do well with this time, I’m sure.

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