A truer measure

I finally got a few minutes to put proper blog posts together… so indulge me if you will.

You’ve all read this point that the surgery went off problem free. While there have been no immediate improvements, I honestly do feel that it’s only a matter of time before I begin to see some amelioration in my condition. The trip is about more than just venous angioplasty — it’s about hard physio- harder physical therapy than I’ve ever undergone in Canada. It’s about creating a new support structure, one replete with people going through the same things as I am. And what came as the biggest surprise — it’s about learning when to ask for help, even though I don’t want it, and even though I don’t think I need it.

Most people reading this know how pragmatic I am; my atheistic views on life are an example of that. That’s not to say that I’m devoid of any sort of spirituality, I just have a hard time believing in a deity, at least one that controls life as we know it. And if there is one, well… I have some choice words for ‘it’. I don’t know if the surgery will have any impact on my condition. But if ever I were to try something such as this, even with minimal risk, I think best to do it for the disease takes an even stronger hold on my system. And that’s why I’m down here – to try. I tried Rebif, a first-line treatment for MS. It did nothing but leave me feeling like a bag of crap on days posts an injection, as well as leave the area around my belly button littered with bruises from the self injector. I tried Tysabri, only to have a neurologist (Dr. Mark Freedman as matter of fact) suggests that I discontinue that and instead began treatment with the chemotherapy drug used to treat leukemia. The chemo drug, as a third line treatment, was the first one that had an impact on my disease course, and though it didn’t make it any better it’s certainly stopped in its tracks for about 27 months that I was able to take (that is the maximum allowable). So drug one didn’t work. Drug two, though not given much of a chance, likely wouldn’t have had much of an impact either. Drug three hit the pause button on the progression but did nothing to make me better. But this treatment, this venous angioplasty, at least as in the protocol laid out by Dr. Zamboni, has had positive impacts on so many people. The why is still kind of up in the air; are strictures in the jugular/azygous veins really and truly the cause of this insidious, crippling, progressive disease? We don’t know… but I was desperate enough to give it a shot.

Some good will certainly come of this, even if not to my disease, its progression, or its impact on me; the blood thinners that I’m going to be taking for the next month will keep me from drinking. In the very least, there is a silver lining there. But exactly how this is all gonna go down is still one giant question mark. I beseech you all stick around and see what comes of it; at least in my case.

A big part of me being here came from a string of fundraisers. Each and every person that donated wants an answer to the same question I do. And while I was sad not to have immediate results, I believe they will come. I’m back in the hospital Wednesday for a post-op Doppler to ensure that the angioplasty was effective in clearing the blockage. Stay tuned…

-A.D.

Post-op

“Andrew…Andrew”

That’s all it took to bring me back to consciousness by Dr. Diaz late last night. In what was a very strange sensation, but I’m now assuming was my incision site having been cleaned (my femoral vein – little guy in my inner-thigh), I awoke to a feeling of wetness between my legs (we did the entire op with an external catheter – the nurses were all astounded by this device, having never seen one before – I was just happy that what is certainly the smallest orifice on my body, at least for now, remains an ‘exit-only’), making me nervous that my cath had busted/malfunctioned, but, thankfully, everything was ok. My biggest problem at that point was that I was freezing-ass-cold; operating rooms are generally kept at colder temps to prevent the spread of bacteria. Long story short, surgery went off without a hitch – I anxiously await my next Doppler to see if the blockage has remained open. Up to now, I have not noticed any major improvements, but I’ve yet to start the ‘ass-kicking physio’ they do down here.

I’ll write more once I’m back at the hotel and have my headset and voice-recognition software – but I just wanted to put a quick one-hander together for everyone.

Pura Vida as the kind folk say down here…

-A.D.

The ‘omfg’ stage…

And wouldn’t you know it…5 days prior to my departure, CCSVI, the ‘Costa Rica option’, and Passport Medical have been mired with the saddest possible outcome to the same frantic desperation with which I am seeking endovascular therapy; Mahir Mostic, a pwMS whose case could not have been all that different from mine, has died due to complications from what is misinformatively being referred to as ‘The Liberation Treatment’. It’s sad. And while details are emerging on where the disjunct occurred, on what went wrong, at what level and why, I am sure, sure as I’ve ever been of anything, Mr. Mostic’s death was not entirely in vain.

Any that have been following my blogs may remember one titled ‘Balloon Party‘  where I expressed concerns over some of the same things that played into this tragic story; follow-up care, getting better only to get worse, and what my reaction would be. If faced with the same circumstances, would my decision be any different? Would I book the next flight I could back to Costa Rica and open discussions about stenting my blockage?

I voiced a rather aggressive stance on that question… but much like many things in life, what’s written on paper and what occurs in practice are often two very different things. While I would like to think that I will hold fastidiously to what I had previously stated, the sad truth – I have no idea. I have no idea how I would handle getting better only to get worse.

Life and death… complete opposites. But what they have in common; they can both be cruel and unusually unfair. I have done my due diligence. I have a doctor that has agreed to provide follow-up care. I know there is a imaging facility in Montreal that is capable of doing a Doppler/MRV/venogram, should I need it. I know Dr. Sandy McDonald in Barrie is trying to help as many people as he can. But if/when I experience complications/restenosis, will I have the strength to avoid making the same mistake?

I guess we’ll find out… I leave on Wednesday. Wish me luck… I will most certainly be doing my best to keep everyone up-to-date through further blog posts as time allows.