Saturday, January 31, 2015

Weighing Our Options

Part 2 of 3 about my most recent blood clotting ordeal. Go here for part 1.

Dr Foley ordered an echocardiogram bubble test to check if there was a hole in my heart between the two upper chambers. It's actually a common occurrence that affects upwards of 25% of the population and is referred to as PFO, or Patent Foramen Ovale. It can lead to a DVT (deep vein thrombosis clot) moving from the venous side of the heart to the arterial side which appears to possibly be what happened in my case.

Without a PFO the chances for a DVT posing a stroke risk just aren't there. The clot moves via the veins back to the heart and into the lungs where it's stopped and results in a pulmonary embolism or PE. Where a PFO is present the clot may migrate to the arterial side of the heart and work its way to the brain and cause a stroke or it may become lodged in any number of places as the clot is carried along via the arteries. In my case a clot became wedged in the popliteal artery.

My bubble test was positive for PFO but it shouldn't pose a risk to me now that I'll be anticoagulated the rest of my life. More than anything it's simply important information to have when trying to sort out the puzzle of my clots.

Keith came by Tuesday afternoon just as I was being wheeled back from Interventional Radiology. He spent over an hour with us. It was really nice to see him. I've always felt that I wouldn't be one to want to have all that many visitors if I were to ever find myself in the hospital as I was but I've changed my mind. Visitors are now welcome!

By Tuesday evening I'd been flat on my back for 55 hours but I was about to be given the go-ahead to sit up. The catheter used to deliver the TPA to two of my clots had been removed and was no longer a concern for being crimped if I were to sit up. What a relief!

In Dr Foley's search for clues about my clotting he turned up the CT-scan taken after my bike crash back in September and something leapt out at him. He noticed what appeared to be aneurysms in my left and right common iliac arteries. The scan wasn't definitive so he ordered a nearly full body CT-scan to have a better look at that particular area and whatever else the scan would reveal.

The scan was performed Wednesday morning and not long after it was completed Dr Foley came into my room, stood before us and announced, "I know the reason for your clotting: you have iliac arterial aneurysms!" Say what? This sounded like good news but I couldn't be sure. Good news in the sense that he was on to something more than just the fact that I have Factor V Leiden. He talked briefly to us about the surgery involved in remedying this problem but he preferred to leave most of that discussion for us to have with the surgeon who would be performing the operation.

He told us that the scan I'd just had done showed a new clot in my common iliac artery that wasn't there last September. I picked up on a sense of urgency to not delay in moving forward with the surgery and Tammy and I were both all-in. He told me that my arteries were otherwise pristine and that given my health, I was an excellent candidate to tolerate the surgery. We cooled our heels the rest of the day and into the late afternoon waiting for the meeting with our surgeon in anticipation of surgery the next day.

Dr Johnstone showed up at our room around 6:30 that night and began our meeting by telling us that all of the doctors on the cardiovascular floor know who I am and are familiar with my situation. She had been talking about my case throughout the day with all of them, getting input to be able to better weigh the options for how best to proceed.

She sat down with us and drew a diagram of what's going on inside me. Tammy (more than I) had been studying up on that particular area of the body throughout the day with hopes of being able to fully follow along so we weren't just a couple of bobbleheads with glazed looks over our eyes not grasping any of what was being said. Not to worry. Dr Johnstone was very thorough in her explanations. She said the clots I have in both the left and right common iliac arteries are smooth and don't appear to be fractured. She couldn't say with 100% certainty that the clots that broke free in my body had come from this area. There was a likely chance they did but she couldn't be sure.

She then described the two surgical procedures used to fix the problem. The first would involve the use of a stent to cover over the blood clots by sealing them between the stent and the walls of the artery. The main risk with this method was a possibility that some of the clot would ooze out at either end of the stent and get into my bloodstream, posing a risk for stroke I would guess should the clot matter make it to my brain.

She went on to talk about the size of my arteries being a concern. I have fairly large arteries throughout my body she said but the arteries in this part of my body are twice the normal size. What she couldn't be sure about was whether or not this was because they've always been large or are they still growing in size? If they're still growing in diameter this would pose a problem for the stent as it would eventually become too small for the artery. It's a very non-invasive procedure that would allow me to leave the hospital the next day but its drawbacks were making it an unlikely choice.

The 2nd surgical option, what she described as the "gold standard" to remedy my condition is a major surgery involving cutting me open from just below my heart to a point just above my pubic area. She would then go in and perform a bypass of the clotted area. Recovery from this procedure would be 5 to 7 days post-op in the hospital with 2 of those days spent in ICU (intensive care unit) followed by months of recovery. She said it's a surgery that my body will never fully stop reminding me of. This procedure comes with its own list of risks as well that I'll touch on later.

The 3rd option we discussed was for me to wear a Holter monitor for the next 30 days to see if my heart is experiencing any atrial fibrillation. It's doubtful that it is but she would like to rule it out. If my heart is going into afib there's a chance that it's producing clots in this condition and this could be a source for them.

There was a lot on the table to consider but the short-term decision as to what to do for now was a no-brainer. I chose to wear the Holter monitor for the next month. I also told her, and Tammy agreed, that should I need surgery I would opt for the bypass. It seemed to be the one that would hold up best over time.

She said that if we're able to rule out atrial fibrillation as a cause and I come back and tell her that I'd like the surgery now, she would say that I'm making the right decision but then she added that if I were to tell her that I'd like to wait on the surgery, she would tell me that that too is a right decision. They both have their pros and cons to consider.

This is getting a little lengthy and I've got more to say about our final meeting with Dr Foley so I'll finish this tomorrow.

Friday, January 30, 2015

I'll Be a Few Hours Late

Where to begin?

I'm finally home after my longest stay ever (4 nights) in a hospital and it's so nice to be back. I've been having more clotting issues related to my Factor V Leiden condition and once again they nearly got the best of me.

I had noticed some cramping in my feet for the past several weeks as well as some pain in my lower left leg when I'd try and workout. It became so debilitating Sunday morning that I couldn't even walk on the treadmill for two minutes at a speed of 1 mph. There was a sharp pain in my shin that was now radiating to my calf which felt exactly like a lactic acid burn when muscles are overworked and starved for oxygen. Because the pain had been more toward the front of my leg I put off any thoughts that it was clot related but now that it was migrating toward my calf I was reconsidering.

I went up to talk with Tammy about what I was experiencing and she insisted I head over to Ridges ER in Burnsville to have it looked at. She'd have come with me but she was just beginning her workday and I assured her I was fine to get there on my own. I called my work to tell them "I'll be a few hours late".

It was a quiet morning in the ER and I was seen within a few minutes. The doctor asked me a few questions while a blood-draw was performed and from what I described he made a cursory diagnosis of Claudication, a circulation problem usually associated with atherosclerosis. He said that what I was describing was classic for this condition but his evaluation made no sense to me. Whatever was happening to me came on much too quickly for it to be related to a hardening of my arteries but if he was right, what did that say about the condition of the arteries in and around my heart? I didn't like what I was hearing.

He sent me back to radiology where they performed an ultrasound looking for clots because of my history with them. The D-dimer test from the blood-draw must've also been positive for clotting because I was no sooner brought back to my room when the doctor had me taken back once more for another scan. They would eventually find a large clot in the popliteal artery behind my left knee. It was literally shutting down nearly all of the blood flow to the lower half of my leg. He drew a diagram for me on the whiteboard and said if we didn't act fast I could lose my left leg at the knee.

He told me of a Dr Foley at Southdale Fairview and said he's the guy I have to see for this. If he could choose to hand me off to anyone it would be him. He made arrangements to have me taken by ambulance to the emergency room at Southdale Fairview Hospital in Bloomington. Tammy was now by my side and I needed that.

Thankfully, Dr Foley was there when we arrived and he met us in our room while quickly going over what they had found so far. I expressed to him that I was feeling what may be a pulmonary embolism in my left lung when I breathed deep. I knew that feeling from before. He ordered a CT-scan of my chest to go along with whatever other scans he would need. He didn't like the look of my leg and reiterated what the previous doctor had told me about the distinct possibility that I may lose my leg at the knee. There was virtually no pulse to be found. The only blood flow getting through was from the extraneous system of veins that worked their way through the tissue. The main lines had been cut off. My mind kept going back to the thought of losing part of my leg and what my new normal would be like.

I was wheeled down to Interventional Radiology where their team wasted little time preparing me for what would be maybe a 30 minute procedure to thread a catheter through my right groin at the external iliac artery then up and over through the common iliac artery then back down the left side through the femoral artery to the popliteal artery behind my left knee. Here's a diagram to help.

The vascular surgery team found two clots: one in my left femoral vein and one in my left popliteal artery. The CT-scan would find another in the form of a pulmonary embolism in my right lung. I had no clue how sick I was when I walked into Burnsville Ridges ER a few hours earlier.

The fix for my clots would be to place a very slow drip of the clot-busting drug, TPA at the site of the clots in my leg and allow it to work over the next couple of days with a vascular surgeon and his team going in on subsequent days to reassess the progress.

I would have lots of downtime in between but Tammy and Rachel were there throughout much of it to keep me company. Having Rachel come up from Rochester to be there meant a lot to me. She's a busy person and I would've understood if she couldn't be there but she was. What a sweetheart!

The IV rack next to my bed was ridiculous, reminding me of a Christmas tree. Blood-draws were performed sometimes several times a day from a single vial at a time to a dozen. Medical science is amazing as are the people who make up the field.

On Tuesday morning they would spend more than two hours using a combination of methods including angioplasty to try and open up the vascular system of my lower left leg. It's delicate, tedious work as the arteries become tinier and tinier the further down my leg they went but they were successful!

Dr Foley was described to us as someone who looks at cases such as mine as riddles to be solved and that's exactly how he came across to us. He was in search of clues and an answer as to why my blood was clotting as it was and where the clots were originating from. It isn't enough for him to simply rest on the fact that I have Factor V Leiden and leave it at that.

To be continued...

Friday, January 23, 2015

Some Thoughts of Mine to Someday Look Back On

There's a quote that says “When fascism comes to America, it will be wrapped in the flag and carrying a cross.”

Maybe 'fascism' is a little strong, maybe not but it's a swipe at where I see too many conservatives today as they brandish their guns and bibles while caught up in a wave of nationalism that carries them along in a most peculiar display of unquestioning loyalty for a cause that is out of focus and offers them little other than fear in return. I don't get it.

There's been lots of discussion on social media this week about Clint Eastwood's new movie American Sniper based on the life of Chris Kyle. I have little to no desire to see it. Perhaps in my other life I'd have been singing its praises along with so many other Christians who can't seem to get enough of this sort of thing but I've moved on. Sorry for sounding so harsh but the way the Christian faith has been hijacked in this country is more than a little unsettling to me.

Rachel spent most of Wednesday afternoon and evening at home with us. We love her visits. For much of our time together she and I sat at the kitchen table and talked. It was so nice. I've been a little under the weather lately and she was just the ray of sunshine my world was craving.

We had dinner at Outback Steakhouse before returning home and settling down to watch the State of the Union address (her idea) that I'd recorded the previous night but hadn't yet had a chance to watch. I wouldn't say she's a political person but maybe she is. She surprises me with her interest in politics but mostly she passes it off as more about wanting to be informed than anything else. I admire that about her.

Her views of the world and her politics have evolved very similarly with Tammy's and mine over the last several years but what's most interesting about that is the way these changes have happened for us with very little influence from one another. We've all been moving in the same direction, separately but together.

I liked Obama's speech and sat amused watching as conservatives couldn't find it within themselves to at times applaud him. Why all of the disdain for this man? He's taken our country from the brink of economic collapse and with no help whatsoever from republicans he's helped guide us back to a place where had this been a republican president, conservatives would touting his accomplishments in terms of greatness.

It's difficult to watch right-wing media and not become annoyed when so much of what's being said there is often so far from what's actually happening. It's annoying to me because the audience appears to just accept what's being said without questioning it. How many times have you heard them talk about the national debt that's accrued during Obama's time in office while at the same time inferring that it's his policies and reckless spending that's to blame? Nothing could be further from the truth. But I get that it's easier to demonize Obama rather than acknowledge the real drivers of our debt and support the current administration in moving forward.

Dodd/Frank is legislation initiated by Obama's administration to help reign in the abuses on Wall Street. It's purpose is to help bring stability to the markets and prevent another meltdown of the kind that sent so many to financial ruin and worked to add to our national debt as revenues fell sharply in the wake of the collapse and the resulting Great Recession. Yet, knowing all that, republicans continue to do all they can to dismantle Dodd/Frank legislation. Why? It makes absolutely no sense whatsoever and is a much larger threat to our way of life than any radical Islamist militant could ever be. But ask a conservative voter to talk about Dodd/Frank and they'll likely give you a blank stare. This is important stuff!

One of the things Obama talked about was offering a community college education at no cost to the student. Yes, I get that at first blush this sounds like another cost we can't afford but think about it. What better investment can we make than in our youth? Don't we at the very least owe them that when you consider the debt we've piled up and will leave to them? One of the memes being shared on Facebook after the speech was the one to the right. It makes perfect sense.

But there's no selling this to republicans. None. Their idea of incentives is to reduce taxes and that's about it. We see where that's gotten us. For the life of me I cannot understand the amount of support that's still there for conservatism as it exists today with its lack of bold initiatives or even an original new idea.

There's so much divisiveness among us now. Social media with Facebook and such play a large role in that but I also look at Fox News as being a main contributor with their skewed set of talking points and relentless assault on anything democratic, especially toward Obama, all under the guise of "fair and balanced". They have a stranglehold on a sizeable percentage of the population and I have to wonder what percentage of their viewers ever question what they're being told or the way what they're being told is being presented; as an example: the heavy emphasis on social welfare programs being the culprit for much of what ails us while making no mention of corporate welfare which is nearly twice that of social welfare. Or the total lack of talk about abuses on Wall Street and how the huge gap between the haves and the have-nots is extremely deleterious to our economy.

The absence of balance is disturbing considering how many people rely on them for their understanding of the world at large. I get that we all have our biases; I have mine. I'm just finding that I'm losing patients with people who offer up the same talking points I hear from right-wing media while at the same time appearing clueless to some of the larger, more important issues that are seldom if ever talked about where they get their information. I find myself becoming dismissive of them and I don't want to be that way.

I'm sure this clip below was about nothing more than some administration staffers having some fun during a luncheon with the president this week but there's clearly some truth in it. Of all of the personalities on Fox News I actually don't mind Shepard Smith at all. I see him as being a standout, not trying to push an agenda unlike just about everyone else on the network.

Saturday, January 17, 2015

Some Sounds from the Past

I spent some time this past week getting more familiar with my Panasonic Lumix Tammy bought me for Christmas. It's my 3rd variation of this camera that I've had in the last 7 years or so. I like them. There's so much it can do and it's not enough to be just a little bit familiar with its many abilities. I want to be able to quickly navigate the menu to get the desired result without too much fumbling around. That's going to take practice and more time spent with the manual actually getting all the way through it.

I'm very impressed with the Intelligent Zoom mode. I took this photo out our window from about 18-20 feet away. My experience with other digital zooms is that photo quality quickly suffers using them so I avoid them. Not this one.

I'm listening to some long lost music from my album collection as I blog; specifically the Bellamy Brothers! Nope, I'm not much for country but I love every song on this album, the one featuring their song Let Your Love Flow from 1976.

I methodically went about digitizing several albums with my Stanton turntable and its USB output connection. Maybe my hearing isn't what it used to be but I'm very pleased with the results. Actually, I don't think I could be happier. Here's a sample, a long forgotten gem from from The Tarney/Spencer Band from 1978. No Time to Lose.

The turntable came with some iZotope software to process the songs into my Macbook. From there I dragged them into Audacity and cleaned up what few ticks and pops I had, which were surprisingly few. They're all currently residing in my iTunes looking pretty as can be! The Best of Bread is the only one in that group available in CD format. I've looked and looked over the years for the others but have never found them. They just simply don't exist in the retail world. I've got several more albums I'd like to convert as well.

I had one of my photos from our trip to South Dakota last summer transferred to canvas. It arrived a couple days ago and I really like how it looks but no matter where I put it in the house it just doesn't seem to fit. I may have a spot down in the workout room where I can see it while I ride my trainer but I was hoping for something different. I planned to put it in the sun-porch but it just doesn't work there, not even the laundry room. If nothing else I suppose it could work as garage wall art. I've still got a Lance Armstrong poster hanging there that needs replacing.

I'm fully committed to retiring at the expiration (or before) of my countdown widget pictured to the left which expires on January 2nd, 2016. It's been nice to be able to work beyond age 56 (the required retirement age for controllers) because of a waiver I qualified for due to time spent in the Flight Service option early on in my career but it's made walking away from this blessing of a career much more difficult than I anticipated. But I'm ready to be done now, or in no more than 350 days!

I'm going to try a helmet mount for my GoPro. So much of what I capture using my handlebar mount has to be discarded because of jerkiness from abrupt movement of the handlebars. I'll have very little of that to contend with using a helmet mount. There's the definite geek-factor I'll be playing into but my desire for better videos is winning out.

I know y'all can't wait!


Friday, January 9, 2015

With 100% Certainty!

Tammy has spent the last couple days getting her new sewing room organized. I had no idea it would be this involved. She's going through all of her crafting things located in the den and reorganizing them for storage in her sewing room. I hadn't imagined it would be this involved but it is and once she gets it done it's going to be a great space for her to work in. Good for her. I'm really happy we did this and just in time for her pending retirement in April.

Speaking of her retirement; she picked up a pesky virus on her computer downloading a countdown widget for her retirement date. I finally got rid of it but it was much more of a hassle than it should've been to find the solution. I ended up uninstalling her Google browser and all of the associated files then downloaded a clean version. Fixed! But back to her retirement and her idea of a countdown timer. No viruses possible with this version!

I swore last year when I bid my schedule and vacation for this past year that it would be my last time participating in the bidding process. I was wrong. I was always hedging in my head that I was 85-90% sure I'd be retiring at the end of the year but the 10% or so won out. I can say for certain though that this is without question the last time I'll write my name on a schedule line and I say that with 100% certainty!

I surprised a few people by bidding Tuesday-Wednesday as my days off. It's a very junior schedule but it works for me in a couple of ways: I get to work with a younger crew which I like and it has me working shifts where there's not a lot of training happening. I like that too. I hope to finish out the year or somewhere close to it but I'll just take it a month at a time and see where it gets me. We're losing so many people in the spring and it'll be near impossible to get unscheduled time off once they're gone. I may get caught up in the mass exodus as well.

I was going through some of my albums last night from my previous life and found myself kicking around the idea of trying to get some of them digitized. There are two in particular that I've been seeking out since I've been online but they've never come available on CD. One is from a '70s group called Stonebolt. They were a Canadian band with an original sound that worked real well for me. The other is an album by the Bellamy Brothers featuring their single Let Your Love Flow. I've never been much for county-western music but I loved every song on that album. I had originally bought it for my brother-in-law Jerry while I was in the service. I came home from leave at one point and it ended up back in my possession and I've kept it safe ever since.

There were several other albums in my collection that I'd like to turn into 1s and 0s so I got to researching turntables that have a USB connection for the conversion to digital. I found this one that I think will work just fine for my needs. That got me thinking too...I think I'll set it up in our sun-porch and actually use it with some of my old albums. I have a friend, Phil, who's always spinning tunes on his turntable, I assume for the richer sound. I hope my ears are still good enough to appreciate the difference!

Video from one of my rides last week that didn't make the blog cutoff...

Saturday, January 3, 2015

Cluster Headaches

I'm in the throes of my worst cluster headache phase ever. If you're unfamiliar with what a cluster headache is this video will give you a very good idea. This, at times, is my reality.

Cluster headaches, also referred to as suicide headaches have been described as the worst pain known to man. They're worse than a migraine or childbirth or a severed limb. If you've ever had an ice-cream headache where there's a terrific pain behind one eye for 20 seconds you have a bit of an appreciation for what a cluster headache feels like except the pain lasts anywhere from 15 minutes to 3 hours. They're called cluster headaches because they come in clusters. In my case they typically last 4 weeks and during those 4 weeks I'll usually get only 1-2 headaches each week provided my doses of prednisone are doing their part to keep them at bay. After the headache phase has passed I'll often be free of them for anywhere between 12-20 months.

I'm not sure what to make of this current phase of headaches. They began 4 months ago in early September and have stopped and restarted twice since then. I've experienced 2 headache phases back to back before (separated by a couple weeks or a month) but never 3 phases, one after the other such as now.

When the headaches first appear I'll begin taking prednisone as a prophylactic which is usually quite helpful but there will still be breakthrough headaches that I'll need to treat with a 20mg imitrex nasal spray. The amount of prednisone I use depends on the severity of the cycle. Typically I can get by with 40mg a day but currently I'm taking 70mg and it's still not enough. I'm still getting at least 2 headaches per day even at this level and it's left me so exhausted.

I'm feeling desperate as I write this, not sure what to do, wanting to just live my normal life but unable to with this monster living inside my head and wondering when will it next make an appearance. Will I be able to discreetly take an imitrex spray if I'm in the sector and will it work fast enough to abort the headache so I can confidently do my job? The amount of time I'd need to take off from work to deal with the headaches is more than I have available to me (unless I simply retire) so I keep the fact that I'm in a headache phase to myself.

I'm in a very small minority of people who are affected by these headaches; I'm 1 in 1000. They first began for me at 17. I recall being in school and having this intense pain behind one eye that would only last 15 minutes back then but it would come out of nowhere and worry me. I'd wonder what in the world was that and why is this happening? In a month they'd be gone and it wouldn't be until I was in the Navy before I'd experience them again. I'd eventually receive a proper diagnosis in the early '90s and given prednisone and imitrex to help manage them. Prior to that I was really on my own to just deal with the pain, meaning, I had no help at all. They were very upsetting especially since I had to maintain my medical at work in order to continue to keep my job. I've spent more breaks than I care to admit locked away in the privacy of a stall in the men's room praying to get it together before being paged back to work.

Doctors know little about what causes cluster headaches because there's been so little money directed toward the study of them. Pharmaceutical companies are reluctant to expend resources developing drugs to treat them because of how few people would benefit. Without enough people to make it worth their while and provide a recovery of their investment I understand why there's very little research being done about them.

Tammy was reading online about the benefits of psychedelic drugs such as psilocybin mushrooms and LSD in stopping cluster headache attacks. I'm desperate for relief as I write this and would no doubt entertain that avenue for help but I'll need to wait until I'm retired. I've already pushed enough on the boundaries of what's permissible.

The prednisone leaves me feeling edgy and anxious but it's also a godsend. I would just really like to get through this next few weeks and come out the other side headache free and then go from there.

The lure of retirement has never been stronger for me.