Started cardiac rehab this week, three times a week for an hour each, I am now one month out from my Aug 10 aortic valve replacement,
Doing 13 minutes on a treadmill at 2.5 mph and then 10 minutes on a stationary bike, (I'm not counting the couple minutes of warm up and cool down),plus "weight lifting" with a 1 lb weight in each hand, and some stretches. I have to laugh considering that I was doing Cross Fit a year ago with a bunch of superfit 30 year olds (I am 67--I'd scale it down to "geezer cross fit": still, I was doing 50 situps and box jumps and burpees etc...intense 30 minute Crossfit routines. I stopped 6 months ago or so, because my body was just saying something wasn't right.( But I am so glad now to be able to start from ground zero and lay a firm foundation, and do it in a room where I have a heart monitor and nurses watching over me and keeping track of my progress!
I have noticed that when I do about 20 mintutes of walking, at a fairly mild perceived level of exertion, it is the next morning that I feel it--a feeling of being deeply "drained" deep in my chest, and of needing a "rest day". But my energy gradually builds during the day so I get more functional. ! asked my surgeon why this fatigue happens and he just said "Well, you were out for five hours, and we beat up on you pretty bad in there!" That made me laugh!
I'm now in my 18th day of new life with my new aortic valve. I'm doing well! I've cut down on my hydrocodone/Tylenol pills from 8 a day to about 3 or 4 a day (using ibuprofen instead), and walking up to 4000 feet at a stretch; helping cook meals with my wife and doing dishes; and getting some writing done too. I sleep quite a bit. I love the fact that my normal blood pressure is now normal, around 120/70 (I used to have a huge gap between systolic and diastrolic) as is my pulse of about 65 resting (it used to be about 40--and no, I am NOT a runner!)
But in this post I wanted to paste in something that happened on my third day of recovery. I wrote it up on the fifth day, and am just copy-pasting it here (with a few corrections).
It was a pretty amazing interesting event that made be feel like Jason Bourne. Here's the description:
I am finishing my fifth day of recovery after an aortic valve replacement. It went really well, but on the third night I had a remarkable incident. I woke up out of sleep, in a bed and room I did not know, with a young man standing near me fussing with something. I look around, felt he looked familiar somehow, but had no idea where I was. (Imagine waking up in a hotel room in Vietmam tomorrow morning) I asked him who he was, and he said’ You know me, I’m Matt; I’m replacing the IV on your hand.”) I said, “I don’t remember you and I don't know where I am.” He said “What do you mean?” I said “Well, if you asked me how to get from my home to “here”, I ‘d have no idea where to go. I have no idea where I am, how I got here, and what I am doing here.” I looked at him, and around the room, and I could have been whisked to another planet for all I knew.
The amazing thing is how clear and lucid I was. It was just that my current experienced world was completely detached from my larger memories. Matt quietly asked me questions, starting with my name, my wife's name, etc. I knew all that. I just didn't know where I was or why I was there. He then fished for any little things I could remember, doing this for about 20 minutes. One first things I said to him was: “Okay, I do remember my daughter was flying in from New York to help my wife, and my sister is flying in to help her too.” ANd then: ’Hmmm, they were to help during some kind of surgery, but I don[t know what or what for.”
Then slolwly I would remember little patches of conversations with people in the hospital--but just little vague fragments tha tdid not form a whole. Like "I remember this nurse doing something ..."
And then I started thinking out loud about why I couldn't remember where I was. I said “Okay, so maybe I had a stroke which affected my memory.” The nurse guy--Matt--said “Why do you think that?” And I said “Well, I know stroke can zap memory, and I remember reading, this surgery--hmmm-- does have about a 1.5% of causing stroke.” (Matt then had me do a few tests and said: “Good try, but you haven’t had a stroke, Steve.”
I was just like I was Jason Bourne or something, so far as my recent past went. But after about 15 or 20 fragments fell into place, the whole fabric of memory reknitted itself to my larger memory… I then again knew just where I was at 100 Michigan Avenue Grand Rapids, and how and why I got here.
But it took wonderful patience and gentleness on Matt’s part, in a quiet private room, to recover this. It is interesting that I didn't go into any panic or anything (maybe hydrocodone helped!; instead it was like our our little science-fiction adventure or something. I'm glad my wife wasn't here...it might not have all been so calm and re-assuring if someone got panic-stricken.
Each new round of nurses I’d tell about it, in case it happened again and they needed to “bring me back” back again.
Perhaps it can be of some value for others to know about htis. It seems like memory-cells that seem to float off to the side can get re-knit to the mainland by low-key back-and-forth dialogue! A doctor-friend of mine suggested yesterday that it may have been caused by a very mild case of "postoperative intracerebral vasospasm." I don't know about that--I did a little research on postoperative cerebral spasm but didn't find anything described similar to what I experienced.
But if you get like I was and don't remember anything about where you are, try to remember: don't panic!
Yesterday afternoon I was discharged from Meijer Heart Center and came home. My sister Nancy is here helping my wife Anne--they are off shopping at farmer's market right now. My atrial fib episode of Saturday midnight-plus subsided with the help of beta-blockers by Sunday mid-day and has held good ever since, with my new "normal" heartrate of around 65, rather than around 43 as for earlier decades. Plus a new-for-me normal blood-pressure of 120/70 or so. My heart is gingerly working its new aorttic valve and saying "Hey, dude, what have we got here?!" I walked about 1000 feet yesterday to see the neighbors, sat a chatted, then walked back--up a non-trivial hill. This morning you better believe I felt it--like totally depleted, and it was a bigger relief than ever before to get to the end of my 6-hour norcal span and be able to take two more of those babies! i shoulda restrained myself I know, but its part of my learning curve I guess. I feeling great now, but plan to baby myself totally for a while, doing planned exercises and walking each day and NO MORE even if I feel it will be easy and isn't hurting. (The non-easy/hurting comes a day later, I now see!)
THere was very interesting segment today on the Dianne Rheems Show about the role music is being found to play in recovery from surgery.
Good news! my A-Fibrillation intrusion ended at 11 pm on Sunday night (about 23 hours ago), and my heart has held a steady sinal (=sinusoidal?) rhythm for almost 23 hours right now.
it seems pretty likely that tomorrow morning the team will come in and tell me I can go home! (in fact, that I *hafta* go home!) tomorrow (Tuesday) afternoon. My sister Nancy flew in from Beacon NY today so is there to give some extra support for ten days. But I am now pretty self-sufficient--I get up and dress and clean up on my own, move around in my room on my own, walk 300-600 feet three or four times a day (more than I averaged for most of my life, someone might suggest!)
So unless some new wrinkle emerges to be ironed out, this will be my last message from the wonderful 7th floor of the Meijer Heart Center.
Shalom to all
Right outside my door here--visible, in fact, from my bed--is a lovely framed piece of Chinese Calligraphy by a Chinese artist who teaches at GVSU. I will need to take a picture of it before leaving and send it, as well as this room, which has become very dear to me.
The last few days have seen a few bumps in the road but these apparently, physically, common events after hear valve surgery. The main event, arriving last night about 11 pm, was the arrival what a EKG verified this morning as A Fib--Atrial Fibrillation. Along with lower blood pressure. So this morning I was given a beta-blocker first, to see how the problem responds to this. I ws sold won't be released until the A Fib comes under control (not sure how long that will take) and has been there for 24 hours. I have a nice room, am free of all tubes, have wonderful nurses, and was making great progress for the first two days (walking 400 feet at a time, eating like a pig, had my first BM today, sugar levels good, wearing my comfy UnderArmour T-shirts and shorts instead of that hospital gown, etc. But the onset of A Fib is rather intense as well as unexpected (to me), though to doctors it is a routine blip on the screen that is p=etty common during the post op period. That operation on the heart just impacts on those electrical neural cells that control the timing of heart beats, apparently. So now the program is for me to rest, not get stressed out, and let the docs find their way.
Am tired now...can hardly focus on the words I am writing, so over and out for now@
just a quick post to say that everything is going well. I mean, like really really really well Dr. Timek did a great job, my care-givers here ae wonderful, and I guess I am one of those folks for whom pain management just goes swimmingly well. Will give more details later--but thanks so much to this site, as well as to all of you who have been sending good thoughts and prayers my way.
This is an update from Stephanie (Steve's daughter). My mom and I got a post-surgery update from the surgeon, and then we were able to see Dad briefly.
Everything went well! They put in the new aortic valve, and did some repair to his mitral valve as well. The heart was bigger than it should be (as expected, due to the aortic valve issue) but the surgeon reported that this would hopefully revert back over time. They gave him some platelets to help with clotting after the surgery. When we visited him, he was still under anaesthetic, but they said they'd wake him up in a few hours - we look forward to going back to see him again when he is awake.
Thanks for all of your thoughts and very happy to report this good news!!
the night before christmas and all through the house...
Journal posted on August 9, 2016
its 9:32 pm; tomorrow I get up at 5:10 am, take a shower and scrub with that special red germicidal soap, and go with my dear wife and daughter to the heart center. Pre-surgery starts at 6:15; surgery at 8:15. I feel at peace tonight, knowing it's not in my hands. Nor even, ultimately, the surgeon's hands.
My dearest daughter Stephanie once gave me a little poster: "We don't know what the future holds, but we know God holds the future."
She'll update this journal for me tomorrow afternoon. Thanks Stephanie--you're wonderful!
Thanks you for your support, all of you...family, friends, colleagues, and you my fellow adventurers on this website.
I was hearing a famous song by Johann Sebastian Bach in my mind tonight, and decided to look up the words.
Jesu, joy of man's desiring
Holy wisdom, love most bright
Drawn by thee, our souls aspiring
Soar to uncreated light
Word of God, our flesh that fashioned
With the fire of life impassioned
Striving still to truth unknown
Soaring, dying 'round Thy throne
A quick update on three things for family, and in case it';s helpful to anyone out there.
1. Today we got in the mail a four page report dictated by my wonderful second-opinion doctor at the U. of M Heart Clinc. She'd done a stress-echo, spent a good amount of time listening, and who also upped to 40 mg./day my lasex (a diuretic to avoid fluid retention) since 20 mg hadn't changed much for me.
2 On my neck discomfort, I decided to risk being a hypochondriac, and called my family doctor and got a quick appt with the PA there, Cathy, She was was really helpful. She took my vitals and then did some checking, found my left carotid artery did look a tad distended (but the right one wasn't), and that a carotid echocard was in order. So she ordered one for 3 pm tomorrow to check blood flow, to get info an anything that may be going on there.
She explained the jugular/carotid thing, showed my wife how to see them, and was just very helpful listening and explaining stuff. We've known her for thirty years there--a great thing about living in Holland Michigan!
3. THen I swung across the street to Holland Hospital where my cardiologist is located, and the receptionist listened, felt I should talk to Dr. Cronin's nurse, so got me in with her. I updated her on the U of M report and gave her copy, updated her on lasex so that Dr. Cronin could be involved in that, updated her on the carotid echo coming tomorrow, and by this route, also expressed my concern/wondering whether these different reports and tests were like satelites, but that I wasn't sure if there was come central body they were orbiting, who putting it all together. (Otherwise they are sort of orbiting a black hole, one might say.)
I felt she was listening well and hearing what I was expressing, with understanding, and she said she'd be sure to communicate with Dr. Cronin.
anyone ever have what feels like jugular discomfort?
Journal posted on August 4, 2016
I am pretty asymptomatic, but over the last week have been feeling a kind of achey discomfort that tends to start beneath my lefthand collar bone (about halfway between my outer tricep and my adam's apple), and can then also extend up from their toward my earlobe. I think my jugular vein is in there somewhere.
I'm going to see my family doctor's PA today to ask...hmmm, maybe my absentee cardiologist has a PA or Nurse I can ask instead...anyway, I know no one out there is a doctor (and if you were you wouldn't give a medical opinion here!) but if you've got any ideas or similar experience, any clues appreciated. Aortic valve replacement coming up Wed 10 August it'll be nice to finally get there!
Today we drove to Grand Rapids and met an hour with the "Teaching Nurse". She has us watch a video on how they do things at Meijer Heart Center, previewing the recovery process etc.; and then she sat with us, went over what to do and not do in the week before (meds, etc), and answered questions. She was a very good communicator, warm and informative at the same time. (Thanks, Nurse Judy!)
Here's the really good news. I thought I couldn't have alcohol for ten days before the surgery, but it is actually only 7 days. So today I can go out and have my last beer!
..Er, for a week, I meant!! But I guess you never know for sure! [On that point, One of my neighbors comforted me with this thought: "Steve, no one gets out of here alive!" Yet, our mortality can indeed be terrifying... Worst of all, for me, is the thought of my wife being left, and my daughter.. I don't dwell on that thought, but it has definitely come and sat by my bed a few nights, and I've had conversations with it and my HIgher Power, ...the three of us, as it were, sittin' together facing it.
Anyway, I got home and called a new friend, Russ, who is free at 5 pm, so we are meeting for a beer and catch-up talk then. I'm going to have my favorite--New Holland Brewery's Dragon's Milk!
Bet only one person doing heartvalve journals knows where this is!
Journal posted on July 22, 2016
Had a big MRI yesterday in Grand Rapids, and an echo stress test today at U of MIch where I went for a second opinion. Had a great session with Dr. Sebari at U of M, who spent an hour with me, having had gone over my stress test results and calculated my left ventricle volumes, and also having a second doctor do this independently. Their conclusion: same as my doctors here--I definitely need an aortic valve replacement, the sooner the better. I also got a great independent thumbs-up on having it done by Dr. Timek, near where we live. So that initial ambiguous "conflict" that was in my first blog has resolved itself. I feel great relief--like I can finally rest from my researches! But if I hadn't done them, I wouldn't have been able to participate in the process and feel as confident in the outcomes as I do now. So I'm glad I did this!
Here's one interesting thing. Based on my first two echo's, the ejection fraction, though called "hard to quantitate," was estimated at 45%--a good below the normal range. But the MRI, which is much more accurate, put it at 55%, and the calculations from the stress-echo put it at 58%: well within normalcy. THe catch is that the stress echo also showed that my left atrium and ventricle had significant remodeling to compensate for the aortic regurge, and--in particular--the ejection fraction when I cranked up the heart into the red zone on the treadmill (up to 92% of maximum heart rate!) was *lower* than at rest. (I've now forgotten what exactly that meant. but I think it was roughly that the "remodeling" was not really compensating, or something like that. Will need to get back to that (answers welcome!), but anyway, it was deemed very revealing by the U of M experts.
This, plus the end-systolic and end-diasystolic diameters (of the left ventricle, I think that was), were for the U of M doctors the most significant markers, making me a Class 2A and Class2B candidate for AV replacement. (Dr. Sebari explained what these "classes" signified, something on my list of questions that hadn't yet been gotten too.)
Today we also go Adam Pick's book in the mail, and were struck by his "get a second opinion" mandate. So we were really glad we did this. On Wednesday night I'd by serendipity also met a semi-retired doctor at a little discussion group I go to, who stayed longer to listen to my story, and strongly endorsed the plan of driving to Ann Arbor for this test and second opinion. I was wavering a bit on it, and am so glad for meeting him and having that conversation. And for all the family and friends and folks in church who are supporting me--as well as the community here!
So, anyway, I now have "all systems go" for my August 10 rendezvous with a new aortic valve. Goodbye to the old, hello to the new! We can focus on preparing for that, and for the recovery period afterwards.
And that's where things stand today, Friday 22 July 2016.
Just a quick update to say that this evening I printed out studied that med journal article mentioned in my last post (and gave a website for: you can download a pdf of it for free, unlike many such papers). It's title is
"Decision Making in Asymptomatic Aortic Regurgitation in the Era
of Guidelines: Incremental Values of Resting and Exercise Cardiac Dysfunction."
My summary in my last post basically had it right. It's all doc-speak, full of technical terms, but I found it interesting. I don't want to bore everyone with it here, so I will see if I can put it in a reply to this post below, so those interested can look, and others, not look!
As my last journal says, I love and trust my surgeon Dr Timec who I met four days ago for the first time, and with whom I'm scheduled for an Aug 10 aortic valve replacement. but I'm still thinking about whether to go to Ann Arbor and and get a second opinion from the cardio doc there, Dr Sebari. (May not be spelling that right). I do have a booking for that next week Thursday, so need to cancel it if I feel it's no longer needed.
Here's the thing (if I can just think outloud here a minute). THe woman doing the appointments, there relayed to me that Dr. Sebari looked at my first echo, and said that if I wasn't symptomatic I may not need surgery (or need it yet), and that she'd like to do an exercise test on me. (Dr Timec said that if I felt I wanted to explore that, go ahead--let her look at the data, get more data, and find out what she thinks. )
Now here's another hting. Up until four weeks ago I was "normal"--walking 3 miles, treadmill on an ncline, dance lessons for an hour with my lovely wife, etc. Since learning I've got aortic regurge, I of course start feeling a bunch of "symptoms"--real or imagined, I don't quite know. So a little part of me, though I trust my docs here, just wants to explore and see if Dr Sebari will have a different perspective, and what it's basis will be.
So tonight, I like took a brisk 45 minute walk through a park by our house, and felt good. I started wondering, is there some new stuff out on this business of timing of surgery? What's the signficance of this exercize test Dr. Sebari wants to do. So I got back and decided to google "aortic insufficience, surgery, and exercise"
What I found is a 2016 paper by researchers at the Cleveland Clinic that seems like it might be relevant. Here's my take, based on a very quick first skim-read of it. Seems like there's some ongoing research in the AVR (aortic valve replacement) field) to learn how to better make decisions about timing of AVR surgery. Seems like some people with aortic valve regurge tend to hold level for a while, and others go down hill fast, and so they're trying to figure out how to predict better which is which. So I want to study this paper and see if it might shed some light here on where Dr. Sebari might be coming from. The paper is written in a technical journal, by doctors for doctors (not real people like you and me); but in case anyone's interested, the paper is: http://circimaging.ahajournals.org/content/7/2/352.long
So I plan to study this paper tomorrow.
Now one question is: if one has aortic insufficiency like I have, even if it is holding level, will one still almost certainly need a new valve in 3-4-5 years or whatever? Yes or No?
If No, I want to know more.
If Yes, a good quesiton is: what's the point of waiting? Well, I can think of possible good reasons that some people might have to still wait--and good reasons others might have for not waiting.
Okay, my last question is whether I should even post this. I mean, I don't want to create a tidal wave or epidemic of people reading it and getting into over-analysis or second-guessing their decisions or their doctors. So I will see if anyone ways "Steve, maybe you're right that it's not a good thing to post here, because it might impact in an unhelpful way." If so, I can take it down. (Maybe Adam will send me an email on this! Adam, do you read these things?) For now I will just *temporarily" post it.
On my surgery date, my great surgeon, and numbering our days
Journal posted on July 15, 2016
HI All. Thanks so much for all your responses to my first journal entry. A few days ago we met with the recommended surgeon for me at the Meijer Heart Center in Grand Rapids (Michigan). His name is Dr. Timek, and I really liked him. I'd of course been studying everything I could on aortic valve replacement, and going over all the test reports from two echocards, heart cath, X-Ray, blood work, and CT Scan, so I had lots of questions--all written out. We covered them all; I almost felt like I was a colleague of Dr. Timek! We scheduled the heart surgery for August 10.
I have an MRI next week to get a more precise fix on the left ventricle ejection fraction (LVEF). I told Dr Timek how, in the first two or three weeks, I'd worried I might actually have hypertrophic cardiomyopathy (HCM), which is genetic and runs in my dad's family, and thus contacted several HCM Centers of Excellence for second opinions--and already gotten one, based on the first echocardiography test results. He was totally fine with that, and is fine with me talking with as many other cardiologists as I want. (I do have appointments for this at U of Mich and Mayo). I told him I had a lot of confidence in him (he has great reports), but asked him how many valve replacements he'd done, and if he could do as good a job as a surgeon at those places. He said he could, but that what was important was what I felt, and that he'd have no problem at all if I found another surgeon I'd prefer to us. I told him about that initial preliminary "second opinion" by the doctor at U of M (see my first journal entry), and asked him what could lead to a difference there. He said "That's a good question: you will have to ask her!"
His answers here were all so so spontaneous and warm and from the heart--I treasure this about him. (I myself can, alas, be get very defensive and prickly in parallel situations: I hope I still have time to become more like him through-and-through!)
Yes, that "hoping to have more time" is something in my heart. There are times of anxiety. But we can make so many assumptions, and this whole thing is helping teach me to "number my days", as the Psalmist puts it. Surgeons are required to tell one the risks, and though I'm in good shape (the heart cath showed I have coronary arteries "of a 22 year old" (that';s due solely to my wife's Mediterranean cooking: I am a pretty sedentary guy!) there's still a operative mortality rate of perhaps 1-2%, and about the same for the surgery causing a stroke. But with aortic insufficiency, there is far higher rate of not making it through the next two years.
So I am just trying to learn to put myself in the hands of my Higher Power, and trying to let awareness of my finitude help me treasure each day and its opportunities.
And enjoying learning more about this amazing "fearfully and wonderfully made" body I've been given for 67 years. I've written some amusing stuff on that recently which I may post soon.
What to do when a second opinion doesn't (at first) agree
Journal posted on July 5, 2016
I am 66 yrs old, 6'2", 210 lbs, in good health, just retired this month.
This past month I've learned, out of the blue, that I have a heart problem, and the hometown cardiologists here (in Holland Mich) say I need a aortic valve replacement. They say it is "urgent," but not "emergency"--which means, more or less in the next several weeks.
It has been a very fast four weeks for me.
I doubt anyone will actually read all of this (I am a very prolix guy) but this will be a good place to put it into words the story so far--at least part of it.
The story has proceeded along two tracks, with Track Two coming into its own only today, with a phone call from U of Michigan.
Let's begin with TRACK ONE.
1 TRACK ONE.
1.1 Wednesday June 8. In a routine colonoscopy , the anesthesiologist asked if I knew I had a a pronounced heart murmur. I said No; he said to get it looked at asap.
I met with my family doctor that same afternoon, who ordered an echocard asap. The first available date was June 16. (My family doctor heard the murmur and was surprised. I'd had a yearly physical with him two months before, with nothing evident to him. And since then I'd not had big problems, though I had sometimes been feeling somewhat sluggish (I started taking baby aspirin's, feeling "my blood felt thick." Still, I did three mile walks three times a week, and did light workouts at the gym, and took dance classes with my wife--country two-step, for an hour at a time.)
1.2 Thursday June 16. Got the first echocard, which was sent to the Holland cardio-group (Spectrum); but the first appointment available was Thursday June 23.
1.3 Monday, June 20. Impatient to get news, I met with my family doctor, who got the reading of the echo and said it indicated aortic sclerosis. So I started doing research on that right away. I also started checking into a heart disease I'd heard has occurred in my father's family and is genetic. (See TRACK TWO BELOW.)
1.3 Thurs June 23. I met with the cardiologist, whom I
ll call Dr C. She asked us questions, listened closely, did some examination, and said the echo showed I had serious aortic "leaking" of the aortic valve. Aortic regurgitation. She explained using a whiteboard how the heart works and what this means. And then she said that I needed a new aortic valve asap ("urgent, but not emergency"). I'd been learning about this so it wasn't a total shock. We talked about it a bit. (I liked her a lot. Italian, and with a certain pastoral intensity and empathy that one rarely sees in doctors--much like the best pastor I've ever had, Pastor Mary.)
She ordered a trans-esoph echo and heart cath as soon as possible, which was scheduled for Thursday June 30.
1.4 Thurs June 30. (This was just last Thursday June 30, before the big 4th of July weekend, ) I got the trans-esoph echocard (TEE) along wth a heart cath), with a new cardiologist from the same office (in Holland MI), whom I'll just call Dr. G. Before the procedure, I had a whole list of questions, but decided to reduce them to just one: I told him the HCM family history and asked him to look very closely for HCM, even though he said the first echo showed I didn't have it. He agreed to do this. He was nice--but not quite the communicator that Dr. C was. (I miss her!)
After the TEE, he confirmed "No HCM" and confirmed that a new heart valve was needed asap (still "urgent but not emergency"--but now, "with the first surgeon they have available" rather than, as before, the one that had been highly recommended by Dr. C) .
So he ordered scheduling to meet for discussion with the first surgeon available for surgery (at the Meijer Heart Center in Grand Rapids MI (near Holland, where we live.)
I am now waiting to hear from them.
TRACK 2: My Quest for a "Second Opinion".
2.0 I should warn you, I am not only wordy, but also a bit of researcher and like to be really clear about things. Especially things in my body like my heart when they seem to need surgery.
2.1 June 8. So from Day 1 (that is, June 8) I started drilling down. I learned the disease in my dad's family used to be called idiopathic hypertrophic sub-aortic stenosis, and is now called hypertrophic cardiomyopathy, or HCM. It comes in two forms, non-obstructive and obstructive: the latter is HOCM, cutely pronounced "hokum." So I started learning more about it.
2.2 June 16. When I was told the first echo showed aortic sclerosis, I started doing research using what clues I could gather from the two discussions with the Holland doctors.
2.2.1 So first, I started looking into whether aortic sclerosis can be confused with (or overlap with, or be underlaid by) HCM, and how the two are differentiated, and how the treatment differs. Wikipedia has a table on this, actually.
2.2.2. I also started learning about the history of HCM. Four doctors--chiefly Dr. Barry and Martin Maron have a wonderful paper on the 50-year old history of this, with attention to two important times of controversy about it in the cardiology profession. (Since one of my academic areas is history and philosophy of science, I ate this up, and hope to do more on it once I am through all this.)
2.2.3 I also learned about HCM Centers of Excellence. I decided to see if a few of them might be able to be a source of second opinion on my condition. How to go about getting a second opinion, what "second opinion" actually means, and to what degree it is covered by insurance, was an area of some murkiness to me. There has been no opportunity to talk with the Holland cardiologists directly about it my diagnosis or getting a second opinion (they seem rather tightly booked). But I called their office and talked with the nurse, and she said it was fine to pursue my own leads here.
I made clear to her, I hope, that by "second opinion" what *I* mean is a close look from a source independent of the doctors in the Holland-Grand Rapids Spectrum Health group, with a special concern to get some outside HCM-expertise involved, just in case there is some overlapping or underlying HCM condition.
2.2.3 There is a Catch-22 timing issue here, however. From the start, my Holland doctors think I need the replacement asap, which I gathered could be, like, as soon as July 10, plus or minus 4 days or whatever. But HCM Centers of Excellence tend to have a longish back-up time, so it has not been clear whether I could get input from them within the "urgent" time-frame that my Holland doctors were urging.
2.3 Here there is a terminological and communication issue I worry a bit about it. . My Holland cardio-doctors have said that second opinions are in general fine, they said, but in this case, they also said, there is no time dilly-dallying around. Also, they seemed to say that the meeting with Dr. G during the TEE and heart cath count as a second opinion, and that the meeting with the Grand Rapids surgeon would also count as second opinion.
To me, there is a terminology issue here which may have important consequences. Talking with a cardiologist during the session for the necesarry TEE and heart cath is, to my mind, a necessary part of the spectrum-health process of getting me into surgery. The same goes for talking with the surgeon they find for me at the Grand Rapids Heart Center. These, after all, have to be done in ANY case. Do they count as "second opinions"?
Well, let's just call them "necessary second opinions."
So one question is: if we call these "second opinions," will Medicare (which started for me on July 1, alas) decide not to pay for a what I am am personally wanting--namely, a more independent second opinion from outside the Spectrum chain, like from an HCM centter like U of M or Mayo?
I have no idea. But it strikes me that terminology may matter here, medicare-wise. Or maybe not? This is all totally new to me.
Do I worry too much? Or maybe it's just that as a philosopher of science, I am really fussy about what words mean? And we philosophers take time to talk with each other about these things, without having to postpone them to appointments or conversations done while one sits in a gown with no back about to be put under with fentanyl and percocet for a bat (sonar: get it?) to be put down one's throat!
In any case, I will call what they call second opinions "NECESSARY second opinions." ANd I will call what I call second opinions, BONUS second opinions. (Calling them GENUINE second opinions might seem like begging the question too much in my favor, I suppose.)
2.4 So here is how my own quest for an BONUS second opinion is going.
2.4.1 Called Mayo's HCM and they were able to schedule me for Aug 4-5. Mayo gave me an address to send my echo results. I did this. (I wonder how a world-famous clinic ever got named after salad dressing, by the way. Have to check on that.)
2.4.2 I also called the U of M HCM Center of Excellence, and described my situation, and the coordinated nurse there made a phone call, and jump-started me into an early morning Friday July 22. Cool,
U of M said they could download the data from my echocards etc on their own.
I figured they'd do this a few days before the appointment dates. Doctors are busy people.
2.4.3 I called the Minneapolis HCM Center where Barry Maron worked for decades (though now he has, bless his heart, gone to join his son Martin at the Tufts HCM Center). Nurse Vickie there was wonderful on the phone, but the three doctors there do not look at data from outside tests, and their backup is six to eight weeks. She said it sounded like my aortic valve thing needed work first, and that afterwards I could get back and look into the HCM testing. She also said that echocards miss between 10-20% of HCM cases, and that to detect those, an MRI was essential.
(I wonder, though: can the echocard tell the cardiolologist if it is possible or not for you to be in that 10=20% type of "overlookable" cases? ANalogy: Using a telescope to inspect a grove of trees for grizzly bears, it might in general be the case that there is a 20% chance that a bear could be behind a tree in the grove, and you not see it. But if the telescope in a particular case shows the trees are all skinny poplars, you might be able to say, in that particular situation, that there definitely is no bear in *that* grove. The issue is whether, in some of these cases but not others, you "can know what you don't know."
2.5 So anyway, I expected nothing more from Track 2 until my appointment at U of M on July 21 (assuming I am allowed to wait that long for surgury, without dropping dead first, or, worse, incurring the wrath of my Holland doctors by dilly-dallying and making like I don't trust their expertise.
But, lo and behold, today I got a call from U of M.
THe doctor there had procured my first set of echo's (the external ones), had reviewed the data already, and would be getting the second echo results too (the TEE one). But so far she could tell me three things things:
Thing 1: I do not have HCM.
Thing 2. She wants me to come to U of M and do some testing, including an exercise test.
Thing 3. If I am asymptomatic, I do NOT need an aortic valve replacement.
2.5 So what do I make of this?
2.5.1 Well, for one thing, I am not sure if I am asymptomatic. I mean, in the last three weeks, I feel my heart beating at night very strongly, have some recurring peculiar sensations that I pay more attention too and even get panic-ky about, and so on. (THere is a whole other "Track" here--Track 3, I guess--which involved my calling 911, being found okay, but still having my drive me to the emergency room. Also, my dad dropping dead on his 42 birthday due to heart failure. And my mom, at age 58. And my little sister Beth, at 38. (I am 66--OLD!)
2.5.2 For another thing, I am am ready for a valve replacement if it is needed: I have no desire to avoid it or dilly dally. (The danger of dilly dallying, my doctor here said, is not so much dropping dead at once, as irreversible damage to the heart itself.)
But, on the other hand, there is an operative mortality rate on surgery, and furthermore, the clinical judgment on surgery can be a judgment call, with mild-to-moderate AR often best kept under close monitoring without surgery.
2.6 Drilling down on this last night, I started to digest two technical papers on how clinical judgment is made in cases like mine.
2.6.1 From the first paper, done by a cardiology panel commissioned to look at this, I learned that judgment requires looking at at a range of different sorts of data, some "specific" (with known 'specificity', which is the flip side of 'sensitivity'), and some supportive. And what, in indicating severity, there is ambiguity in the data (with "outliers" that don't fit with main data) it requires more quantitative expertise in doppler readings, and judgments as to what the "outliers" in the data are likely due to, in cases like mine.
2.6.2 From the second technical paper, I learned that "In cases LIke mine" may perhaps include, relevantly, that my aortic backwash is due to an eccentric jet spurting backwash (regurg) back into the left ventricle. My guess is that "eccentric" here means "off-center"--due to an off-center gap in the three-flap kitty-door which is my aortic valve. For eccentric jets, it is harder to measure and calculate, from Dopper echo data, the LVEF--the crucial Left Ventricle Ejection Fraction. And getting an accurate fix on LVEF seems to me is a key thing in deciding whether on the continuum to put the severity of the aortic regurg, and urgency of the need for surgery.
2.6.3 There's also, I suspect, some issue about whether my case is chronic AR or sudden onset/acute AR. That can also, as I understand it, make a big difference, because with chronic AR the heart has had time to adjust to the changes in the valve, but in acute AR, it hasn't, and damage can quickly occur, making it risky to dilly-dally. In my case, we're not sure how long this has been present or what brought about its sudden manifestation.
2.6 The bottom line, as of today, July 5:
I am interested, if there is time, in getting input from the U of M doctor, and seeing evidence gets 'negotiated' or 'processed' when, due perhaps to difference in weighting of different sorts of data, there is some initial disagreement. In philosophy, disagreements can be very helpful in leading us to re-consider certain assumptions we may have made too quickly in our interpretations if data, and in seeing ambiguities in the data, and that is how I hope this will be approached too.