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.