Fumbling, but getting by...

This most recent (and current!) blood clot has been something of a Comedy of Errors -- but I don't feel much like laughing. The events I'm about to document here are a good reminder that medical folks are still just people. And people don't always get things right the first time. Or the second.

So let's start with what I know now. Or at least what I've been told to date. Because "what I know" gets changed again and again recently. And having the correct information about a serious condition like a blood clot is a serious affair.

So. I have a blood clot in my lower left leg. It's in one of the two major veins down there that channel blood back to the heart and lungs. It's different from the clot I had last year in my right leg: last year's clot reached from my lower right leg into the upper leg, which made it much more dangerous. (Think about it this way: the diameter of veins gets larger as they get closer to the heart [as smaller veins empty into a larger common one -- kind of like small streams emptying into a river]. And the larger the diameter of the vein, the larger the diameter of the clot. And the more damage the clot can do if it breaks loose and heads towards the heart and lungs.)

There seems to be a sharp division between a superficial blood clot (one in the smaller veins close to the surface of the skin) and a Deep Vein Thrombophlebitis (or "DVT") which is a clot in one of the larger veins, which are located deeper in the body cavity. The superficial clots do not represent any serious danger, and are usually left untreated. The body normally dissolves them without any assistance. (I had one of these last year in my left arm before any cancer treatment started. And it, in fact, cleared all by itself.) It's the DVT's that are the concern.

So I'm better off than I was last year, as the current clot is smaller and more remote. In addition, we seem to have caught this clot earlier than last year's clot, so the swelling in my leg is much less pronounced. Here's the annotated chronology of recent events:

Sunday, April 18: Randy and good-friend Ron drive to South Carolina for a week of golf. Trip takes 11 hours.

Wednesday, April 21: Randy feels a tightness in his left calf that doesn't release with stretching. Tightness stays with him throughout the rest of the week but, fortunately, doesn't interfere with the golf.

Friday, April 23: Randy and Ron drive home. Traffic around Washington is bad and trip takes 12 hours.

Saturday, April 24: In the AM, Randy feels fine during the Turks Head Jugglers practice session. By the PM, he's on crutches -- unable to walk without serious pain.

Sunday, April 25: Randy and Deb visit the Chester County Hospital Emergency Room. He gets a sonogram on his upper leg, which shows all blood vessels running clear. **Issue #1 -- technician does sonogram on upper leg only. He asks tech, "Why not do ultrasound on lower leg as well? That's where the pain is." Tech explains that they're only concerned about the danger presented by a DVT in the upper leg, and sonogram readings from the lower leg are more difficult to interpret.

As a follow-up procedure, Randy gets a D-dimer test. (This analyzes the blood for remnants of clots, which suggest that clotting and clot dissolving are going on somewhere in the body.) The test result is interpreted as showing that, yes, there is a significant clot somewhere in Randy's body. (Bet I can guess where it is!)

Randy is placed on two blood thinners: a self-injected medication called Lovenox and Coumadin, which comes in pills. **Issue #2 -- it turns out that the prescribed dosage is much too high.

Thursday, April 25: Visit with my chemo guy -- a visit that had been scheduled long before the blood clot issue came up. He sounds amazed that the ER would have placed me on blood thinners when the sonogram came up negative. He has me schedule a second sonogram to confirm the first, but doesn't take me off the blood thinners. **Issue #3 -- I ask him if the tech should ultrasound my lower leg as well as the upper, and he tells me "That's a good idea." (How come I have to ask that? Shouldn't he just know that?)

Doc tells Randy to make a follow up appointment as soon as possible after the ultrasound. Turns out the doc doesn't have an appointment available for over a month. We schedule a Monday appoitment with a Nurse Practitioner.

Friday, April 26: Randy has a sonogram at a satellite facility of the Chester County Hospital. The tech is much more thorough, and spends a great deal of time doing ultrasound on the lower leg. She confirms that the upper leg veins are clear, but that there is complete blockage of one of the two major veins in the lower leg. **Issue #4 -- is this a DVT? I would have said no, that DVT's are only located in the upper leg. But read on...

Monday, May 3: Nurse practitioner tells me that this is, in fact, a DVT and therefore needs to be treated as such. We question her, as we understand the situation differently. She leaves the room to confer with a doctor, then comes back and tells us she was mistaken. The clot is not considered a DVT (as it resides in the lower leg), and therefore we should stop using the Lovenox and Coumadin and begin taking a baby aspirin every day to facilitate the blood thinning process.

This being the case, we're informed, there was no need to perform the pro-time blood test to determine the current level of blood thinning. So there was no confirmation as to whether the blood thinning dosage was too much, too little, or just right...

Wednesday, May 5: Chemo doc, reviewing the situation, tells Randy to stop taking the aspirin and go back to the Coumadin. **Issue #5 -- wasn't the doc the guy who was surprised that I was placed on blood thinners to begin with?

Strings are pulled to set up an appointment with the doc on Tuesday, May 11.

Monday, May 10: Blood-thinning test shows levels almost twice as high as desirable. (This test should be performed once a week, but hadn't been performed for sixteen days of blood thinning medication.) Fortunately, Randy hadn't cut himself anywhere doing stuff... **Issue #6 -- Somehow, this simply shouldn't have happened.

Tuesday, May 11: Doc expresses surprise and concern at pro-time reading. (Maximum desirable number is 3. Randy's number is 5.) Doc backs off on dosage. Declares blood clot to be a DVT after checking with Wikipedia, and says I should continue with Coumadin for at least two months or so. With testing every week. Deb asks about the desirability of using compression stockings, and doc says "That's a good idea." Doc also frowns on any extended driving. Baltimore (roughly 2 hours) is okay, but Meadville (roughly 7 hours) is not.

Thursday, May 13: Discussed the situation over the telephone with the Nurse Practitioner we'd seen on May 3. She explains that there has been simply a difference in definition as to what constitutes a "Deep Vein Thrombosis." All parties concerned say that the clot exists in the tibial vein, but does that vein qualify as "Deep," since it's in the lower leg. But is located right next to the bone, so is literally as "Deep" as you can get in that region. Okay...

The wrap-up: So I don't feel all that abused by the medical system and am sure that everyone was doing their level best on my behalf. But I must admit there has been a loss of trust. But I have to give full credit to my chemo doc, who changed his diagnosis and prognosis right in front of Deb and me. Explaining and apologizing as he did so.

And maybe that's a good thing. To be reminded that I need to follow up on anything and everything that raises any question in my mind.

I know that every doctor I ever see rushes from one examining room to the next again and again all day long. Five days a week. Trying to keep on schedule. And every examining room has a patient with a unique situation. I can't imagine how docs -- and phycisians' assistants -- do all that and stay sane. It would certainly drive me crazy after a month. Or less...

And as my chemo doc points to me, the whole blood-clotting issue is so much a less threat to my continued existence than the cancer was. And the cancer has shown no signs of returning.

When I come off the blood thinners again -- in a couple of months -- we'll explore the reasons that I've been clotting to begin with.

I look forward to that.