Duane's Heart Valve Journal

Two years ago today was my mitral valve repair via sternotomy surgery, and two years ago on Monday was my stroke and intervention. Hard to believe it’s been two years. In some ways it seems like the far distant past; in other ways like yesterday. The bottom line is I’m doing great, and I am thankful to God for His loving care and healing.

Sure, I proudly bear a faint “zipper” scar on my chest (want to see it?!), one you can only really see if you’re looking for it. I run 3-5 miles several times a week, plus do some light weight training at Gold’s Gym. I’m planning to run two 5K races in March and April. Last summer Peggy and I vacationed in Utah, Nevada, Arizona, and Colorado and did some great hiking in our spectacular National Parks, including an ambitious 8-mile round trip hike up to Observation Point from the bottom to the top of Zion Canyon at Zion National Park. Since my open heart surgery, we’ve welcomed two new grandchildren—one girl and one boy—making our current total ten. Things are busy with the church. In other words, life is good and is back to “normal” in almost every way.

And yet, after open heart surgery, I feel like I’m a different man in some ways. I don’t think you can ever be the same after something like that. I don’t think you’re supposed to be the same. Pre-surgery, I mistakenly thought this was just a fluke, I would have the surgery, recover, and it would be over and done with. Wrong. I now know that I am forever a heart patient. I am on Coumadin for good. But worse things than these have happened. And I think after open heart surgery we’re supposed to be better people—more grateful, more aware of how precious life is, more attune to the people we love, closer to the God who carries us through. (I just wish I could get back the patience I felt during my recovery; that’s unfortunately long gone!) In some ways, the memories and urgency of those harrowing bumpy first days of surgery, stroke, recovery, and setbacks have faded, yet I cannot forget the words of my internist Dr. Otto to my whole family after the stroke intervention: “we have seen a miracle here tonight.” Sometimes I have to remind myself, but my life is a miracle. So is yours. For sure.

Some of you may know that about a year after surgery in February 2011, I developed some symptoms which led to an ECHO, which surprisingly revealed moderate aortic regurgitation (new!). Since then I have been under watch for AI—Aortic Insufficiency. I had a follow up ECHO in April and again this past October. The ECHO reports have been reviewed by my local cardiologist Dr. Willard and my heart surgeon Dr. Accola. Thankfully, the last couple ECHO’s have been stable. My next one is in May. Obviously, I’d like to avoid a repeat performance! But I know I am in good hands, God’s Hands, and I trust in Him.

“And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.” (Romans 8:28)

It’s been a while since I posted an update and some have kindly been checking on the latest with my heart. A month ago today on 4/5/11 I had a follow-up echocardiogram since my last one in February showed a new concern with Aortic Insufficiency (AI) and some other (some scary) issues. I obtained the report from the echo for myself within a couple days (and self “read” it), but due to a rescheduled appointment with my cardiologist and the sending of the report and films to the surgeon in Orlando, did not consult with any doctor until April 20 and 21.

Some positive things I, in my “great expertise” (scary, isn’t it?), noted in the latest echo:
Ejection fraction back up to 60%
No pericardial effusion
Tricuspid valve leaflets back to “thin and pliable”
NO “possible aortic dissection” (a very good thing to NOT have)
AI or Aortic regurgitation (AR) constant at moderate

Dr. Accola, my surgeon, was actually pleased with the echo and thought things looked a little better overall. He was definitely pleased with the ejection fraction and said the mitral valve looks great. His recommendation was to check another echo in six months (not three).

Dr. Willard, my cardiologist, felt like everything looked about the same regarding the AI/AR in particular. He gave me the okay to continue running 3 miles (which I have been doing), to resume toning weight training (not heavy lifting which is harder on heart valves), travel, and hiking. Hoping to visit some western mountains this summer, so it’ll be interesting to see the effects of high altitudes. He even told me it was okay for me to ride roller coasters—well, that is, after I told him I already had! I was given another card to carry in my wallet that states I have Dressler’s syndrome (chronic pericarditis). So that goes beside my other cards—Coumadin patient, mitral valve annuloplasty ring serial number, and high risk for endocarditis. Be vigilant to protect against infections. He told me we could be monitoring this AI for 20 years before anything would need to be done. Only time will tell. All in all, go live my life and I’ll see him in 6 months for another echo and consult.

It’s been a struggle, but I think I am in the process of accepting and coming to peace with the reality that I will be a heart patient for the rest of my life. For one who had hoped and thought it was an isolated episode that got fixed and was over with and behind me, it has been an adjustment. But, like the Bible promises, God’s grace is enough for me. And I feel His grace.

Thank you, everyone, for your prayers and concern. I gladly accept these latest echo results as answered prayers and give thanks and praise to my Lord Jesus Christ. Hopefully I will not need to post again until my next echo in October. So I will (and you too) keep on ticking and fully living!

Just an update on my new era of watching waiting with my aortic insufficiency discovered about a month ago. It’s been a busy month, with lots going on. Lots of God’s finest blessings and joys. On my 52nd birthday March 12, we found out via a Skype call that our son Benjamin and his wife Bryanna are expecting their 2nd baby in September. Our son Jonathan and his wife Becca are expecting in October. So now we have TWO grandchildren on the way—numbers 9 and 10! Later that day I ran with my daughter Sarah in the Shamrock Walk & Run 5K in downtown Winter Haven. My time was 27:31 (an "accidental" 14 second improvement from my last 5K). Out of 215 total runners, I placed #96 overall and #7 in my category of males age 50-54. It was a blast to run together with Sarah! I ran without issues. Our son Andrew, his wife Nikki and their two children also arrived from Nashville that day and spent last week with us. Because of Andrew’s work with Bandit Lites, he took me to a Lady Antebellum concert in Plant City on March 13, and got us backstage. We even met the band and got a photo taken with them. The next day we went to Sea World with his family plus our granddaughter Gabrielle. I even rode the new Manta roller coaster, despite all the heart and surgery warnings. (Hey my doctors told me to just live my life and do what I do, and that’s what I do!) What a blast! Check it out @ www.youtube.com/watch?v=-8kfo39hmJI&feature=related. I’ll try to post some new pics.

Oh yeah, I forgot, regarding my heart…Actually, I shared the above to illustrate that we are indeed just living and enjoying life. We’re doing well, feeling well, and we’ll face what we’ve got to face when we’ve got to face it.

My next echocardiogram is scheduled for April 5, the first of three already scheduled to monitor for any interval change (followed by July 19 and October 18). I was surprised that my cardiologist went ahead and scheduled three; perhaps he’s trying to reassure me that there will be multiple checks in this watchful waiting phase rather than imminent surgery. Fine by me. Being the curious researching kind, I dug out and read through my surgery report from my mitral valve repair a year ago (1/28/10) to see if there was any reference to any other heart issues: “The aortic valve was normal.” “No other abnormalities were noted.” Obviously there were no other apparent issues at the time. My INR levels are still being a pain; yesterday it was 1.8. It got out of whack from some medication changes and is resisting consistency. I’m still trying to run 3 miles several times a week, but my family doctor has advised me not to lift weights, as that exerts a different stress on the heart. I’ve been obeying. That’s all for now. I’ll update after the April 5 echo. Thanks for your thoughts and prayers.

Say what? Sometimes I feel like I’m the HVJ problem child. My sincere apologies to all the other kids.

Okay, you read the entry title correctly. Thirteen months after my mitral valve repair, I now have significant Aortic Insufficiency. My surprise recent bout with repeat pericarditis/pericardial effusion (described in my last entry) led to an echocardiogram on 2/21/11. An alarming interpretation summary was “possible aortic dissection.” Yikes, I had just seen that happen on Grey’s Anatomy (why do I always catch those episodes?)! This got me a ticket for a next day second full day at Bond Clinic, a visit with my cardiologist, a chest CT scan, and a very anxious couple days. The CT ruled out aortic dissection, thank God! But the other findings of the echocardiogram contained some new surprises, especially when compared with earlier echocardiograms on 10/27/09 (my first one 3-months pre-op) and my echo 3/9/10, 5-1/2 weeks post-op, my most recent one before now.

Ejection Fraction decline: 69.5% 55% 50%
Aortic Valve: Before— tri-leaflet, opens well, mild regurgitation, no vegetation
Aortic Valve: Now—tri-leaflet, opens well, moderate or moderate to severe regurgitation, lambl’s excrescences noted (fibrous growths on the leaflets)
Tricuspid Valve: Before—normal, trace regurgitation, leaflets thin and pliable
Tricuspid Valve: Now—leaflets thickened and/or calcified but open well, mild regurgitation
Small pericardial effusion, loculated pericardial effusion
Now (not before): borderline left atrial enlargement, borderline aortic root dilatation

With these stunning findings and with the confirmation of my family doctor, I scheduled an appointment with my heart surgeon Dr. Kevin Accola in Orlando to see what he advises. Peggy and I saw Dr. Accola on Monday 3/7. Not good news, but not immediate news, and, with our growing resume of experiences, not unexpected news. As always, he greeted us with hugs and he and his entire team are wonderfully professional, caring, and straight-forward. Dr. Accola examined the new echocardiogram and CT films and reports and compared the findings with the earlier echocardiograms. He is very concerned about the sudden aortic insufficiency/regurgitation and the lambl’s excrescence (fibrous growths on the aortic valve leaflets). He noted that it is highly unusual for the aortic valve to go from minimal to moderate+ regurgitation in such a short interval and is concerned that the valve may possibly have had an infection (endocarditis). No way to know for sure why or what happened. At times in this life we don’t know why, we only know that. All of my doctors feel that my running had nothing to do with this. I asked about the change in my tricuspid valve as well; he attributed that to me having heart valve disease which is progressive in nature. Dr. Accola instructed me to have another echocardiogram done locally in 4-6 weeks and send him the films for review. If nothing has changed, then I’ll have yet another in 3 months, and then about every 4 months, monitoring for interval change. If or when the aortic insufficiency worsens, I’ll meet with him then and we’ll go from there (aka I’ll likely be facing another open heart surgery). Big gulp! I asked how he felt about me having a second surgery. Obviously we’d both like to avoid that, but he didn’t deny that it’s a good probability that is what I’m facing, at least eventually. He’s confident I can take it (HE’S confident!). In the meantime, he told me to just do what I do and to live my life. I can go ahead and recreationally run, but perhaps dial it back a notch or two. Nothing overly extreme or too competitive. So now I enter a new period of alert watchful waiting, this time of my aortic valve and what about that tricuspid? Time will tell.

Yesterday I saw Dr. Willard, my local cardiologist, and though he doesn’t seem to be as concerned, he is willing to proceed with Dr. Accola’s recommendations and has ordered another echo in 4-6 weeks. Believe me, I’m not campaigning for a repeat! I guess I just wonder what in the world’s going on with my heart? He considers me to have Dressler’s syndrome (chronic pericarditis) and will keep me on meds for it. Dr. Willard doesn’t feel I’ve had endocarditis. He reassuringly tells me, “don’t worry, I’ll keep my eye on you” (isn’t this doctor-speak for “you’re in deep weeds but I won’t tell you so you don’t worry your pretty little head until later”?). Dr. Willard also wants me to keep active.

Obviously, this is not what we want to be facing. In many ways we just still can’t believe it. After all, I don’t look like a heart patient, don’t run like a heart patient, don’t act like a heart patient. After my early recovery roller coaster I’ve done so well. Mentally and emotionally, there is a sense of loss and adjustment we’re dealing with. Honestly, before this I always thought “I really don’t have heart disease, just a fluky valve; it’s been fixed, so that’s now over and done with and behind me.” Reality is that I still have heart valve disease and more to face. And whatever I have to face in the future, I know that Jesus Christ will be with me, and in that we are at peace. Bottom line: Peggy and I trust in God’s hands and in the hands of Dr. Accola, in whose hands God has placed us. I love it that Dr. Accola again reiterated to us at Monday’s appointment that after all, it’s God he works for.

For now, we have much to do and are entirely too busy to worry about what it’s not yet time to worry about. Jesus said to take one day at a time and to seek first His kingdom. That is what we will strive to do, though I expect to have our weak moments. And so, in celebration of my 52nd birthday on Saturday, I plan to run the Shamrock Run & Walk 5k in downtown Winter Haven with my daughter Sarah. Running with Sarah will be really special. Don’t worry, my doctors are okay with me running, as long as I don’t push it too hard. And I would never do that; now would I?