Looking back and looking forward

I had an echocardiogram and consultation yesterday at Hopkins. I'm glad to know the heart issues of the summer are behind me :-)  The new valve is doing just what it was intended to do, and the pressures that had been high are where they belong.

My lungs seem to be healing well and haven't held me back. While I haven't yet returned to my normal exercise level, I did enjoy a superb 58 mile bike ride on Saturday. It's great to feel more and more like myself. I also feel lucky how relatively easy my clots were to deal with... I've met plenty of people who had more serious complications than I did.

We now resume focus on the rest of the heart (left side), especially the aortic root (where the aorta connects with the heart).   Docs will review recent and historical CT's and echocardiograms to see how things have changed.  The hope, of course, is "not much".

Next regular checkup is in March. Thanks for listening in, and for all your kind words.

Back from vacation

We're back from 10 great days in California for vacation plus 3 in New Jersey for a Krahe-Buettner family reunion. All fun.

I've been feeling great, but I do know my lungs are still recovering. Had a small amount of discomfort during a chest cold I had early in the month, then felt a bit if restriction bicycling this weekend (riding moderately fast).

Next appointment is September 4th.

Background noise

Today was amazingly one of my longer appointments. Almost 4 hours.

We saw Dr Ringel twice. After the first time when all seemed well, he heard a murmur through the stethoscope that he heard just after the Melody valve insertion a few weeks back.  At the time he had written off the sound as coming from the leaking tricuspid valve, but now that the leak is gone, he wanted an explanation. A second echocardiogram was needed.

The murmur, it turns out, is coming from my Aortic valve. It is not a cause for immediate concern. In fact it is likely this murmur has been there for some time (after my surgery in 2008), but was masked by the big sounds of the pulmonary craziness.

We will watch this over time. The question, less important than the sound made, is the valve's performance. The valve has been categorized as mildy insufficient (leaky) since it was replaced , and may have slipped into the early stages of moderate. Time will tell.

Good numbers

My echocardiogram this morning thankfully shows pressure across the Melody valve where it belongs, or at least nearly so!  While they can no longer measure the right ventricle pressure, they are comfortable that it too has improved since my tricuspid valve is no longer leaking.

This is all a dramatic improvement from just 2 weeks ago, and a wonderful feeling.  Next appointment is September 4th.  Until then I'm free to start exercising as long as I keep in mind the right lung is still recovering.

Smiles all around :-)

Testing and theories

A sonogram of my legs yesterday showed no lingering blood clots. That's of course good news, as it means there shouldn't be any new embolisms coming.  What it doesn't tell us is whether the original clots came from the legs or from the valve itself.  The leading theory is the legs, or, more specifically, from the insertion points for the catheters.

Knowing the original cause of the clots would help future patients.  Could clots like mine be prevented in the future?  Was I more susceptible this time compared to 2009?  Am I hyper-coagulative (prone to form clots more quickly)?   For my short term, knowing is moot, partially since it's behind me, and also that I'm on a blood thinner for six months.  I'll have bloodwork for hyper-coagulation sometime soon, so that may add a piece to the puzzle.

That I'm feeling better each day is a good sign.  Less pain.  No fever.  Good energy.  I even walked a mile last night with Eddie, stopping to rest now and then, but light years better than a short walk to the corner with Alli I think on Sunday.

Because nothing like what I've experienced has happened in the ~3,000 other United States Melody valve cases to date, the next step was jointly determined by Dr. Ringel and his trusted colleagues around the country.  On Monday we'll do an echocardiogram to estimate what change, if any, has occurred with the pressures in and near the heart.  It could be that my body is still adjusting to the valve and reacting to the clots, or it could mean there is something else going on.  The results from Monday will tell us if we wait longer or if we do more tests (probably a catheter echo and camera inspection).

In the meantime, thanks for reading.  Enjoy the weather if you live near us!  The Washington Post gives the rating for today a subjective 10 out of 10 ... superb for a DC July.

Taking a deep(er) breath

Saturday evening and Sunday required a healthy dose of expletives, I'll be the first to admit.  The peaks of pain from my right lung weren't as high as the 24 hours previous, but for sure, they weren't far behind.  There were periods without pain, where I could lay down and sleep, but those rarely lasted more than about 90 minutes.

Granted, I had avoided the narcotic Oxycodone as my pain med, partly because of how it makes me feel (not like myself), and partly because I didn't need more of a departure from normal digestion (one of its side effects). I relied instead on Tylenol and Tramadol.

I was ready to start Oxycodone Sunday night, but a funny thing happened. Overnight I could lay down (on my left side only), and breathe, without pain. And I could easily fall asleep. Although I was up every 2 to 3 hours, I could always return to laying down and sleeping shortly after.

As you can gather, the days previous were not comfortable. While I could always get reprieve by standing, the need was far too frequent. And while I wasn't doing anything that required more than shallow breathing, I knew that deeper breaths were important to avoiding pneumonia, something to which, for the moment, I'm more susceptible.

Today was entirely different. Alli said it first, just watching me come into the kitchen to write a note while on the phone with Dr Ringel. I was clearly feeling better.

It sure helped that Ann Marie and kids were taking care of things at home, and my teammates doing the same at work. It let me rest and take care of myself.

I'll post later about my appointment at Hopkins today, and the next one scheduled for Monday. As for now,  I'm going to take advantage of the remaining sunlight :-)

Heading home

And it's before sunset, yay!

Answers

I like it when things fit together neatly.  My diagnosis, which came a short while ago, certainly does this. It completely explains how I've been feeling since yesterday, and likely explains the high pressures identified in my Thursday followup.  

So, Hopkins docs have determined I have multiple pulmonary embolisms.  That is, multiple blood clots that likely formed in my legs during my 30+ hours of bedrest, and traveled to the arteries in my lungs sometime afterward.  Both lungs are affected, with the right lung having the larger group of clots and the largest individual clot.  The location of my pain completely matches up to the location of these clots.  My intuition about how I felt lines up perfectly.

The pain tells a story. It is unfortunate, but the pain is portions of the lungs dying off.  For what it's worth, the pain is felt in the chest wall, originating with the  inflamed, dying areas. While this may sound scary, most patients that have this don't feel any real difference afterward, so the hope is that's true for me.  Because of the great redundancy that the body provides, the affected areas are relatively small.  

My treatment plan involves a blood thinner for at least the next 6 months.  While it does not technically break up the clots that exist, the thinner gives the body the time it needs to do so naturally and helps prevent future clots. I will start on one newer-than-Coumadin medication, Rivaroxaban, that is less likely to lead to unwanted bleeding and doesn't require monitoring.  And while I am still in a fair bit of pain, but we have options to manage that, and it should subside by mid-week.  

It's a great feeling that this diagnosis very clearly matches the symptoms that started yesterday, and it quite possibly explains the higher pressures that Dr. Ringel saw on Thursday.  A conversation with Dr. Ringel will give us a better sense of that likelihood.  He may back off on his tentative plan to inspect the valve with a camera in the Cath Lab as incisions to my legs wouldn't match well with a newly started blood thinner treatment.  We shall see what he says.

We are hopeful to be going home today, and hopeful that this won't affect our travel plans later this week.  Thanks for keeping an eye on me here, and thanks for all of the encouraging words.  

Good test results so far

The pain is still quite present but the echo, EKG, chest xray, and initial blood work show no problems that would explain it. It's only the echo that looks abnormal, but it reads same as on Thursday with Dr Ringel (ie nothing new).

Still at Hopkins, waiting for next step.

Staying overnight

A combination of the late hour (can't do all tests this time of night) and my fever (100.8) means I'm here at Hopkins for the night. A good dose of Tylenol has made a world of difference, as has the always friendly Hopkins staff :-)

Got a chest xray and bloodwork. In a private room watching Full House with Ann Marie and Eddie. I think I'll sleep well later.

Waiting for doctor

Enjoying time with Ann Marie and Eddie while we wait for an ER doc. Already saw nurse. Laughing is fun, but painful!

Headed back to Baltimore

What could be a muscle pull is causing some pretty sharp pain in the right side of my abdomen. Breathing deeply is difficult (because of the pain), sneezing is out of the question. Also have some general achiness in joints, and a low grade fever. This started in the morning, and worsened throughout the day.

Cardiologist wants me checked out tonight, so I'm going in for bloodwork, echo, and x-ray. Depending on timing and my condition, I might be there overnight. I am hoping for a super awesome room like last time, if I am!

Still waiting

Had my followup appointment at Hopkins yesterday. I will share details later, but the short story is heart my pressures haven't changed yet.  While Dr. Ringel has seen a similar problem in multiple Melody valve patients, he hasn't seen or heard of mine.

The hope is that it sorts itself out, so we are going to wait it out a month.  Then, if no improvement, he'll go in with camera to hopefully see what is going on.

Better each day

Had a great meal and fun conversation last night at friends' house :-) Woke up today feeling fairly energetic and went to work. Nice catching up with concerned friends at the office, and good to start catching up on work.

After 8 hours I was ready to go, drove home, and just woke up from a nap. That is unique for me. Ann Marie even said that she never sees me yawn, but this is different :-)

Follow up appointment scheduled with Dr Ringel on Thursday. They'll do another echo to see how I've progressed (the lungs apparently take some time to adjust after this procedure). We'll also have a chance to ask more complete questions about outcomes since we have partial info now.

Thanks for keeping tabs on me!

Dr Duke Cameron

Here's a video with the super guy who did my heart surgery in 2008.  We sought him out in 2006 because of his expertise in aortic valve replacement (where it seemed I was headed) and his deep knowledge of Marfan's Syndrome (which was suspected but I do not have).

Of the three hospitals and surgeons we spoke with, Dr Cameron was the only one with the wisdom to recognize the importance of timing valve replacement surgery. His words were "you know you can have the perfect surgery, but as soon as you do  you start the clock ticking on new problems". He also had experience with the critical weakness of a new type of valve another surgeon had strongly recommended.

Here's the video: Duke Cameron, MD

Dr Richard Ringel

Curious to see my cardiologist who did my Melody valve procedure this week and the stent in 2009?  Here's a video where he discusses research he did for a condition different from mine, but still involving a catheter and stent solution. I love talking medical technology with this guy!

Here's the video: CCI Editor's Choice Article (October 2013): Acute Outcome of Stent Therapy

Easy day today

I felt good today, but was still tired from little sleep at hospital, plus from anesthesia I suppose. Thought I might work the afternoon, but decided to take it easy.

I have a few small sore spots on my skin, one from laying on my back for 36 hours. The others from removal of incredibly sticky tape (IVs, other equipment).

All in all it's pretty amazing though. To be able to get a heart valve in this simple way is so great.

Napped this morning, then had Luke, Nika, and Eddie drop me in Silver Spring for a movie at the American Film Institute (they were going to College Park). I'm on the bus home now as I write this :-)

Still need to post the cool xray I mentioned. Just having technical issue with Blogger app on this phone.

A walk in the park

I took a nice walk with Nika and Luke at the park after getting home from the hospital (discharged a little before 3). We walked about 1 mile.  Although I was tired from precious little sleep last night (no pain, just interruptions), walking and laughing together was excellent!

Photo of Nika and I is here on Flickr

Perilously Close To Perfect

It's a beautiful morning here in the Baltimore/DC area. Or as the Washington Post described today's weather: "Someone stole summer! This day of blessedly dry, mild conditions comes perilously close to perfect."

With weather like this I'm energized to get up and out of here.  First I'll get my bandages off and be allowed to get out of bed. That will be awesome. Then I'll have an echocardiogram, some other tests, and a consultation with Dr Ringel who led this procedure.

Later I'll blog about the "triple reinforced" stents that Ann Marie referred to.  I even have a wild looking xray to share :-)

Ocean View

This hospital room is great. Private room, door closed, big window, end of a quiet hallway, and very little beeping or buzzing medical equipment. While it doesn't exactly have the ocean view I requested, it is at least looking East toward the Atlantic :-)

If you are wondering, I have had absolutely no pain with this procedure (and no pain medication, either). The recovery has been from the general anesthesia, which really wiped me out. I've felt better every hour that has passed,  and look forward to getting up and walking tomorrow.

Thanks for all the warm wishes. I'll blog again tomorrow.

Chris

Ahhhh...nothing like a hospital-grade posturepedic!

Chris finally made it to his room for the night.  It is in a quiet end of a nice new area of the hospital.  He is still groggy, and plans to sleep off the anesthesia now that he is in his night-time bed.  

When he had his first stent procedure 4 1/2 years ago, he had 4 hours of bedrest after the procedure and was up and walking before dinner.  Due to the size of the leg incision necessary for the Melody valve, he had more bleeding post insertion, so will be on bedrest for the night.  Not something he was planning on, but necessary to ensure a nice recovery for the incision point.  

His belly isn't yet ready for food, though he is allowed to order some whenever his appetite reurns.   Laura, his wonderful nurse, just brought him a Popsicle to wet his whistle.  Those wet sponges weren't quite cutting it.  Yuck!

After a good night's sleep, he will have an echo, along with some other tests in the morning.  All being well, he will be discharged and home in time for dinner.

Anesthesia kinds sucks

I am with Chris in recovery as he continues to wake up.  He is still kinda in and out.  Though in no pain from his procedure, he is feeling just generally icky from the anesthesia.  He has to lie still for 4 hours to let the leg wounds heal some before adding movement.  Once he gets over the affects of the anesthesia thing, it will be the lying still that will be the hard part.  He just put in his tunes and is going to try to sleep it off.

They keep saying they have a room for him, but we are still waiting for them to prove it...

It's All Good

Chris just finished up and is now in recovery.  Things went well.  It was a little longer than expected as after each step they measure and monitor before continuing on.  Not surprisingly, his existing stent needed to be reinforced with another before inserting the Melody Valve, which is also attached to a stent.  So now he is triple reinforced :-)

As the pop culture idol from the early 2000s would say - he's like an onion. Because onions have layers.  (500 points will be awarded to the first caller to name the reference correctly)

I am waiting to see him in recovery.  Could still be a while...

Thanks to Nika and Luke for coming down to sit with me, to Eddie for being Alli's taxi today, to Alli for taking care of Laney, and to the rest for your thoughts and prayers.  

Let's get the party started

Chris just put on his 'party hat', as his anesthesiologist called it, and rolled into the OR.  Though his procedure started 30 minutes behind schedule, it is all for the best.  Instead of sharing a team of anesthesiologists covering three rooms, he ended up with his own team that will be with him throughout his whole procedure.  

His doctor said the length of the procedure is hard to predict, but will be somewhere between 2 - 4 hours.  I'll let you know more when he's all done.

Thank you all for your thoughts, prayers and support. It means the world to all of us.

Earlier start, earlier finish

My procedure just got moved to 7:30am (from 11am).  Seems there was a mixup with scheduling the right anesthesiology team.  I'm glad they figured this out now!

Follow me here

If you're interested to hear how my procedure goes this Wednesday, watch this blog. For now, here's a preview of the day.

I go into Baltimore around 9am (nice, not too early) and the procedure is scheduled to begin at 11.  It can last as long as 4 or 5 hours, and I'll need to lay on my back in recovery for an additional 4 hours afterward (to let my leg wounds heal). I'll be under general anesthesia so will be out of it for most of that recovery time, but when I'm able (probably in the evening) I'll be sure to update you here :-)

Here's to all the hard-working medical professionals, scientists, and doctors who came up with this futuristic heart valve option. I am eternally grateful!

If I can do well without a pulmonary heart valve ...

After Touring Dem Parks!

Looking back on my four and a half years without a pulmonary heart valve, I consider myself pretty lucky.  My condition hasn't slowed me down much, and, if anything, I've been more active since 2009 than at any time before.  Strength, cardio, core, biking, yoga, indoor rock climbing, racquetball, and a bit of running.  Today I even biked 40 miles through the parks of Baltimore City.

Alas, a routine echo cardiogram and cardiologist consultation this past Thursday uncovered an issue.  Because of a small tricuspid valve leakage that has developed, my doctors are now able to estimate the pressure inside my right ventricle.  If you want the details, the tricuspid valve connects the right ventricle to the right atrium, the speed of the leakage is carefully measured with the echo, and Bernoulli's principle is used to calculate the pressure differential. The point is, it's a reliable estimation and the pressure is too high; about twice that of a healthy heart (even higher under intense exercise).  Leaving this untreated would risk entering an arrhythmia and, I suppose, other things I didn't care to ask about.

The solution?  First, I've halted intensive exercise, taking it easy on the ride today, for example.  Then, on July 16th I'll be getting a new pulmonary heart valve in a short procedure that requires a one night hospital stay.  The product is the Medtronic Melody Valve, which about 2,500 people in the US have received since it was approved by the FDA in early 2010.  The product and procedure are amazing.  The Melody Valve is made from a cow's jugular vein valve that is sewn into a small metal stent, and like my 2009 procedure, is inserted through my artery (via my leg) to the heart and expanded in place.  The valve will start working immediately, and after ~four hours of laying still to allow my leg wounds to heal, I'll be able to get up and walk around.  I should be able to work the next day, and resume all normal activities within a week!  Not a bad deal.

If the procedure goes well, the Melody should do its job for the next several years.  Maybe 4 years.  Maybe 10.  Maybe longer.  Time will tell.  When it stops doing its job, my doctors should be able to insert another, smaller, Melody inside the first to get another reprieve.  And once that one wears out, or if the July procedure doesn't go well, it'll be another open heart surgery with a more traditional pig tissue valve sewn into place.  I'm expecting July to go well, but will do some planning should a full surgery become necessary.

While I'm admittedly a bit disappointed I didn't reach my 5 year goal, I'm definitely psyched to see how I can perform with my new hardware in place.  Hopefully better, faster, and stronger.  And no more excuse to rest along the way!

Minimally-invasive aortic valve replacement

I love to see advances like this, where aortic heart valves can be replaced without traditional open heart surgery.

Granted, it's worth remembering the new valves have risks of their own. My hunch?  Medtronic's CoreValve, discussed in this article, is like their Melody valve, in that it doesn't last very long.  As such, they are in use for patients who can't handle the risks of a big surgery (i.e. usually very old) and, from what I've learned, as a stopgap for a young person whose body needs to mature before something permanent is put in place.

But medicine marches on!  Thanks to the medical community for watching out for us.