Surgery Options Update

Surgery options update…

On the bariatric surgery, here is what I learned from the successful patients:

At my weight, I am now under a high risk of a post-surgical coma. In the case of the one guy, he went into a coma for 5 months after the surgery due to the complications from the anesthesia and surgical process itself.

For the surgery done successfully without coma, it required several surgeries to correct everything, and due to the weight being beyond that for which there are good anesthesiology charts, he ended up suffering one of those horrible “awake and feeling it, but unable to open eyes, twitch, or scream for help/stop”. He appeared anesthetized, but actually experienced the whole surgery. Months of psychiatric help followed.

Those are just the pure complications that arise from the surgery. As far as the effectiveness for MY condition, they didn’t think it would do me much good either. The guy who lost the most weight, lost 250 lbs in one year (5 month coma helped), and is considered a very successful case. He has to eat every 2 hours to remain healthy. His sister suffers from insulin problems like I do, and he agrees that eating a new meal every two hours would only make the insulin problem WORSE, not better…not to mention bring me to the very edge of diabetic coma each and every time due to the very low caloric intake allowed each time and the insulin spike that will follow. My doctor here has admitted the possibility (which is why he would like me hospitalized for a month post-surgery to do the balancing act himself).

So, again, the risk/benefits issue comes up: the surgery would not do anything to help my underlying problem with the insulin resistance and huge spikes, and it has all the risks/possible complications listed above for someone who has reached my weight.

And on we roll, more updates as they become available… ;-)

First update

Spent 5 hours having blood drawn for various and sundry purposes. Wasn't allowed to eat until it was all over. Ever so much fun.

Won't get some of the important answers from this bloodwork for over a week, so that's a bit on the frustrating side.

Was surprised at the "factory assembly line" efficiency of the day. 640 people were processed by 10 lab techs-in-training and their trainers in 4 hours. My trainee was particularly in need of training. Glad I was able to offer so much help. *wry smile* She almost passed out when it was me, the patient, who had to gently remind her to not give me an air embolism during one of the catheter swaps. Her attending was helping another poor sap, so I talked her through calming back down and sticking the 2" thing in my arm more appropriately. Odd experience, to be sure. I suppose all doctors have their first week on the job, this was just the first time I was on the receiving end. :)

More bloodwork tomorrow, but less intensive. No more 200-250 mL draws for a while...thank God.

Got to chat with a successful bariatric surgery patient for a half hour today. My opinion is even more firmly set against it. When he heard some of my history, he also strongly advocated avoiding it at all costs, the risk/benefit ratio is just not favorable enough.

Now, I am on an amazingly good sublingual painkiller, and as soon as it wears down a bit, I am going to kick off an orgy of grading that should take me through tomorrow.

Signing off for now...

The mind wanders, music accompanies

Music to accompany the wandering thoughts of a quiet night before the coming week...

Bury all your secrets in my skin...

http://www.youtube.com/watch?v=eq2FLZFzBJU

...It's the only thing that slowly stops the ache...

http://www.youtube.com/watch?v=2XBbJFLU9dY

It's a long, hard road out of hell
http://www.youtube.com/watch?v=lyCAhpNJYA0

...and when I start to come undone, stitch me together...

http://www.youtube.com/watch?v=9d9BIvthwJM

Forgive me father, for I have sinned, find me guilty of the life I feel within...

http://www.youtube.com/watch?v=Q0Sbsg9XbFk

Living my life's not hard enough, take everything away...

http://www.youtube.com/watch?v=9sDnasZvLA4

Learned how to fall today, didn't think it would kill you...

http://www.youtube.com/watch?v=SCDimqIEqD0

Wait another minute...can't you see what this pain has done to me?

http://www.youtube.com/watch?v=rgiyX-YFkc8&feature=related

Where do we go when we just don't know, and how do we relight the flame when it's cold?

http://www.youtube.com/watch?v=6q1JsXN9DtU

You know I can't be there each time that you call, I swore not to come, but I'm here after all.

http://www.youtube.com/watch?v=V5vpJkCQ9sk

Moscas en la casa...

http://www.youtube.com/watch?v=PPTtZ28s5NU

Que vuelvas

http://www.youtube.com/watch?v=ORyE03rNROU

Sombra de ti...quiza deba esperar que el insulto del reloj acabe de planear mi fin.

http://www.youtube.com/watch?v=Oa2bTd1qT5o

Hundido en un rincon, entre el polvo y el olvido

http://www.youtube.com/watch?v=eLuNwX0__s8

Hace tiempo que no estaba tan contento, que me dio por aventarme unos tequilas...

http://www.youtube.com/watch?v=08iomveeUDw&feature=related

Si el mundo le pese lo que hago, mas al drede lo he de hacer....

http://www.youtube.com/watch?v=oEwGtBhJxLo&feature=related

Y tu que te creiste, el rey de todo el mundo...ya ves que no es lo mismo amar que ser amado...

http://www.youtube.com/watch?v=hGE8e8zHcN4&feature=related

Me canse de rogarle...

http://www.youtube.com/watch?v=At0l65_75RQ&feature=related

Dos tipos de cuidado - duelo de sones (rhe original "battles", Infante BROUGHT it to Negrete :-) )

http://www.youtube.com/watch?v=666lnbuiDcw

Blah. Hospitals and Doctors and Meds, Oh My....

For those of you that at least get through this introduction, I just wanted to say thank you for your support, prayers, and friendship. Without all of these things, I wouldn't have the wonderful life experiences I have now. I love you all.

I doubt anyone will take the time to get through this long post...it's just late and quiet in this empty house, and I felt like getting all this down on paper. Tonight has been a very painful evening, and I finally broke down and took the prescription "make me woozy" strong stuff for the second night in a row. That being said, I hope any who do torture themselves with my uber-long post forgive my drug-addled writing.

So, in 1 week I will be getting ready to go get hospitalized again, after my previous aborted attempt (see blog post on Socialized Medicine adventures). When we had first gotten the opportunity to go to the research hospital and be exposed to several teams of research doctors, it seemed like an opportunity to possibly get some answers that had been unavailable before.

Now, several months later, I'm not so sure. The communication with the doctors has been less than encouraging, at least not with the three principal doctors (the two referring doctors, and the head of the team that will examine me). I suppose on some level I would simply have preferred for them to not be so certain of the course of action they want to take. I would have enjoyed the fantasy of waiting until we got the whole panel of test results back before we started to plan the next step.

Probably the most discouraging communication has been about the medication. Medication in general has been a discouraging part of my life, but their attitudes about this last medicine have really just disappointed me. In general, medication has not served me well. I have yet to run across a medication to which I do not develop a fast tolerance. 

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Some background on the medication issue:

One constant, painful example of this is medicine to control the uric acid levels in the blood. My baseline levels are well above the maximum norms allowed for healthy adults. In most people, this would generate a severe case of gouty pain. In general, it takes nearly double the level of acid in the blood than healthy levels before I experience any kind of severe pain, usually it's a pretty constant low level. Over the years, I have gone through every kind of medication available on the market, and they have worked for a while, then slowly become less effective, and finally become nearly ineffective at any dose. In the case of the last major type available to me, I developed a severe allergic reaction to the final dosages. So much so, that the doctors decided I can no longer take any medication for this, and I simply try to manage it with diet, lifestyle, and whatever pain medication may be available.

This has been a problem even when it comes to simple painkilling. A few years ago, near the beginning of graduate school, a wonderful friend helped me wean myself off simple painkillers. I never got into the heavy painkillers, no oxycontin, etc, just the over-the-counter excedrin, extra-strength "anything", etc. But, even those, in strong enough doses, can be dangerous to the liver. It isn't something that happens overnight, it creeps up on you. What it took to keep the pain at bay one week is not enough the next week. By the time this wonderful friend helped me out, I was taking 3-4 grams (yes, that's thousands of milligrams) of whatever extra-strength pill might be available. Usually excedrin back and body or migraine. And this was barely keeping the pain at a low hum (never gone, just low enough to be tolerable). Through constant prodding, cajoling, and bartering, this wonderful person helped me back off from that daily need, and learn to live with just whatever pain there was on a daily basis without WORSENING the situation by simultaneously destroying my liver. In the year and a half after that, my liver showed marked improvements. I owe this friend some years of life, and I know I'll never be able to repay adequately.

On to the current medication problem, metformin. As I've mentioned before, my principal problem  (that we're aware of), is a severe resistance to insulin. My body can recognize the need to metabolize the sugars that I intake, but when it tries to tell my cells to do something about it via the signal protein insulin, the cells are unresponsive. They remain unresponsive until there is enough insulin flooding my system to kill several healthy adults from hypoglycemic shock. This is the main part of my weight problem, as the insulin that is NOT used by my cells to process sugar metabolism instead becomes an anabolic steroid like signal causing me to "bulk up". It is also a "starvation preparation" mechanism, causing the body to store every calorie it comes in contact with as a preventative emergency method. Obviously, I'm not starving, but my body is unaware of that. So, I have a very dense muscle mass as well as a LOT of abdominal fat. The degree to which the steroid process works has diminished over the past few years, and now there is less muscle building due to the fact that I simply have been unable to be as active.

Once the insulin concentration level is high enough and my cells begin responding, they CONTINUE responding, which often leads to an over-reaction and hypoglycemia several hours after eating. Which gives me a totally bass-ackwards metabolic response than most people. My sugar levels slowly rise in the presence of not enough insulin. After I eat, they rise some more, but the body floods my system rather efficiently with insulin to keep the levels from rising too far. So, I generally have higher glucose levels in the morning before I eat, and lower in the afternoon after I have eaten. Odd, eh?

Metformin attempts to attenuate this problem by blocking the absorption of carbohydrates (sugars) directly in the GI tract. The less carbs absorbed, the less the body responds to the presence of sugars, the less insulin is released overall.  Sounds like a great plan, no? For many people, this works well enough. In fact, it worked well for me for a while. Like every other medication I've been on, it slowly began to lose effectiveness. I have been on a few medication regimes that have helped me with the weight problem. The first couple  of successful ones helped me lose about 30-45 lbs each. The metformin program made me lose nearly 100 lbs. That's a WHOLE PERSON's worth of weight loss using this method. I hadn't seen weight that low in nearly a decade.

However, it was not to last. Eventually, it began to be less and less effective, and the weight started to pile back on. Only this time it wasn't just a loss of effectiveness (even as doses went steadily up), it was also damaging my GI tract. I mean, it's not a surprising thing, given that you're blocking absorption of ANYTHING directly in the GI, that there be problems. But the problems grew steadily worse and worse and worse, even as the weight piled back on.

I wrote a blog post about how all these problems combined to keep me alive by counteracting each other's effects (GI problems slowing down what would otherwise have been worse weight gain, weight gain keeping me from wasting away due to the GI problems or becoming malnourished, etc), I won't revisit that now.

Anyway, the problems got so bad that my gastroenterologist AND my internal medicine doctor started to strongly suspect Celiac Sprue. This was a disheartening turn of events, because I know folks with Celiac, and I did not look forward to that addition to my lifestyle changes. 

However, my problems did not limit themselves to gluten-containing products. It eventually got so bad that I was unable to eat fresh fruits/vegetables. Salads were entirely out of the question. The tomato on a sandwich was enough to make me regret it later, even if the bread was gluten-free. I went several months of being able to only eat rice, potatoes, meats, and some VERY limited vegetables as long as they were thoroughly cooked. That is most certainly not a very healthy diet.

This was around the time of the first visit with the research doctors and referral process. It was those doctors that recommended I go on that restricted diet until they could figure out what we could do about this emerging GI problem. That was when the research on the metformin turned up something interesting - in a small number of people, metformin can cause problems with the vitamin B absorption pathway in the GI tract. It kind of over-steps its mandate of blocking carbs, and ends up blocking the vitamin's absorption pathway. In some even more limited cases, the damage is permanent.

I posted a blog about that already, and just needless to say, I've become convinced that this damage has occurred. It has been nearly a year since I have been on metformin, and I still cannot have a good GI day without a strong dose of liquid vitamin B supplements. If I miss a couple of days of my doses, I'll begin to react strongly to all the aforementioned food groups: gluten, fresh fruits, vegetables, etc.

Being a scientist at heart, I have been very careful to run controlled dietary experiments on myself over months at a time. After some excruciating months, I can say with all certainty that it would take a nearly toxic amount of vitamin B ingested while taking metformin to keep me from suffering the B-deficiency side effects, and the metformin produces constantly unpleasant side effects. The problems are so pernicious that some days i am unable to leave the house. This is certainly no way to live.

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Whew! Some background, eh? Anyway, the REASON I am discouraged by my doctor's responses the past few months is that they have decided to dismiss my vitamin B and GI problems as simply not sufficient reason to avoid the metformin. And why is it insufficient? Because they are currently out of ideas AND medicine. If I can't take metformin, I can't take anything else. So, in their mind, better to suffer through the problems than to not take ANY medication to attenuate my  insulin problems, because there are no other medication alternatives. 

So, as far as I'm concerned, I'm on the "out of medication options" side of things, then...because I'm tired of living with the side-effects . It's simply no way to live, and no way to have a life outside of the house/bathroom. Now, the doctors and I are sure to have strong philosophical disagreements regarding this position, but I have had plenty of time to think about it, and I would rather enjoy whatever quality of life I can for however long I can without the metformin than chase Puff the magic dragon otherwise known as hope that the medicine's benefits are worth the side effects. 

The second reason it's relatively discouraging is that while the main team lead doctor is paying lip service to searching for answers, he sat us down last time we were there and said that barring me being a liar about my lifestyle and habits, or us discovering something so shockingly unexpected it's not on our current radar of possibilities, we need to start getting comfortable with the idea that there ARE no solutions. No answers. A genetic defect that me and my brother share, but that would therefore be untreatable, and THEREFORE not be worth the government's money to spend on running dozens of gene tests to merely give the problem a name. (Yaaaaaaaaaaaay for socialized medicine!)

And his suggestion for dealing with the "no answers" possibility seems just as radical and dangerous to me as doing nothing. He recognizes that I'm breaking down, slowly degenerating, and overall becoming a useless lump. He believes that my heart will be the first thing to go. So, his proposal involves trying to "buy your heart some more time...time for us to discover something radically unexpected, or for a new medicine to hit the market".

Unfortunately, I don't buy the solution as the potential extender he portrays.  The bariatric surgeries he proposes would serve only one purpose - starve my body without me undergoing the mental agony of slow starvation. Lying to my brain about how full I am constantly to counteract the act of deliberate malnutrition. It's what the bariatric surgeries do well. I don't doubt the surgery. I doubt what it will do for my health.

First of all, my MAIN problem is supposed to be the flooding of my system with insulin. This flooding occurs when I eat my principal meals. Currently, that is only 2-3 times per day. And that flood of insulin has been enough to do the current damage. The surgeries require you to eat 6-7 times a day, just small amounts (like 1/2 to 1 cup of food at a time). So, rather than triggering the insulin flood 2-3 times a day, I will trigger it 200-300% more often. My baseline insulin levels in my system will be much higher on a moving average basis than ever before. In previous meetings the doctor had admitted that if the insulin is high enough, it almost doesn't matter HOW much I cut my caloric intake my body will act like it's in full-on starvation mode and store EVERY calorie on which it can get its hands.

In addition, he admits that doing this will mean that I will constantly be running the risk of a sudden hypoglycemic shock. Therefore, he believes the first month post-surgery I would have to be hospitalized to make sure that I was monitored and any crashes could be dealt with before they became a hypoglycemic coma.

So, an expensive surgery, a constant risk of coma, and all this on the OFF CHANCE that it might help me starve my body at a faster rate than the insulin is trying to destroy it. (a characterization he has admitted is right on). All in the hopes that I will lose some weight for enough time for a new medication to become available to deal with insulin sensitivity. 

As with the metformin, I am not sure that the benefit trade-off would be worth the quality of life change.

So, I'm getting ready to go next week, but I'm also getting ready to not let the news disappoint me more than the precursors have already.

Since no one has read through ALL of this, I won't end this any special way...the beginning says it all.

Vesti la Giubba


Tears and Rain:


Unforgiven III:



Hurt


Low Man's Lyric


Frantic


Broken, Beaten, and Scarred

Red Robot for prez...

Diesel Sweeties cracks me up. :)

He displayes impeccable empathy....

see more hipster robot webcomics and pixel t-shirts

And yet is still flummoxed like the best of us....

see more hipster robot webcomics and pixel t-shirts

Has a cheerful disposition, and a winning smile....

see more hipster robot webcomics and pixel t-shirts

And street cred!....

see more hipster robot webcomics and pixel t-shirts

Employs the system of Checks and Balances like a good American...

see more hipster robot webcomics and pixel t-shirts

Versed in Big Brother Newspeak/Doublethink... :)


see more hipster robot webcomics and pixel t-shirts

And who didn't have a rough childhood at one point or another...he just found his calling early...


see more hipster robot webcomics and pixel t-shirts

The future possibilities

I enjoyed reading this. I may not agree with all of the conclusions the author predicts, but I do believe that he has rightly identified many of the cancers that plague the modern church body, especilly in fully industrialized nations that have the dubious priviledge of being able to grow lazy and complacent.

The coming collapse within Christianity?

Potter's Workshop

High upon a hill, at the end of a meandering path, through the quiescent woods sits the Potter's workshop.

Seemingly removed from its surroundings, yet overlooking all the lands about, soars the Potter's workshop.

A beneficent retreat for the good, and foreboding tower to the wicked, looms the Potter's workshop.

Shuffling and shifting up the path, the Old Fool trundles ponderously up the way to see the Potter.

The effort, palpable; the pain, apparent; the frustration, inescapable; the determination, undeniable - with unwavering purpose the Old Fool treads.

For at the end of the path the Potter works, with a workshop door open for all who visit - though few and precious have been the visitors of late.

At his destination, the Old Fool pauses. He considers the wondrous promise of that open door, mourns the lonely lack other pilgrims, and gathers himself for the visit still ahead.

The trip has taken much from the Fool, though he wryly considers how shallow that reservoir initially plumbed. Believing his heart prepared, the Fool crosses that hallowed threshold.

As his eyes shift from outdoors to in, the Fool's vision is filled with the beloved Potter, quietly working at that unflagging wheel - as He was in all the yeserdays and shall be in all tomorrows.

There, at the wheel, the reason for the Fool's life, hope, and existence. The reason for this trip. The reason. The Potter looks up, His welcoming smile sparking warmth in the most gelid of souls.

"Welcome, my Son, my Beloved, my Handiwork.", says the Potter. "It's been too long since you've visited home. Come in, be refreshed, be rested, be halcyon."

But the Fool remains still, his strength expended. At once basquing in the comfort of his Potter's welcome, yet unable to proceed. He feigns strength and bravery, but only a moment.

Slowly, as if succumbing to the pressure of a suffocating weight, the Fool sinks to his knees. He reaches out to the Potter and cries out, bellowing with emotion but with a strangled whisper of volume.

The Potter rushes over, catching the Fool before that tired head reaches the dusty workshop tiles. "My Son, fruit of My Hands, I am here," whispers the Potter. "You are My design, My creation, My heart. Why do you flag and wax so morose?"

The Fool gathers himself, drinking in the strength that flows from his Potter. Recovering composure, he steadies his voice, and whispers, "This clay has worn out and worn fragile - brittle and thin. Though the soul was rediscovered through your latest design, robustness was not in Your plan."

"Your designs, always so perfect, what happened with mine? Was my soul so hidden, twisted, and scarred that a whole soul and whole vessel could not intertwine? Why do You...", the Fool drifts away, unable to finish the thought - unsure of the ending to the truncated question.

The Potter's eyes mist, His creation's sorrow His own. "My Son, why must you size yourself up by any mold or design but the one meant for you? Their tasks are not yours, your burdens your own. My design for you is ongoing, your purpose unfolding. Don't you trust Me, work of My own?"

The shamed Fool looks down, unable to meet his Potter's kind gaze. "Trust abounds, sweet Potter, but this thin clay seems untenable as I've run out of strength. Each day filled with pain, bleakness, and neverending fatigue." 

At a whisper, saline rivulets down the Fool's craggy face, he continues, "The brightest beloveds you've allowed me, now merely a fond, distant memory. My closest two friends are the Night and my Potter. My work, my tears, my long nights to ponder, my trust of you, Potter...these are the things that keep me afloat."

"My Potter, though honored by the worth you have placed in my life and existence, I cry out 'Unworthy, unable!'. Please, dear Potter, I beg You, implore, arrogate - believe less in me and retire this vessel! Receive me back in Your workshop, a completed piece, purpose served. Please dear Potter, Your vessel does beg with its last ounce of strength!"

With this gasping cry, the Fool now collapses - his reservoir empty, his piece said, his pleas expended. He rests in his Potter's care.

"My Son, My Creation, My Handiwork - you are My design, My plan, My vessel. Your strength is not sufficient for My tasks, but on your strength alone you don't have to rely. My Child, My 

Creature, My Clay, rest your head now, renew in My strength.", the Potter whispers.

And so we quietly leave the Workshop, the Potter speaking His comforting words to the collapsed Fool. Will He declare His vessel complete, a work perfect and finished? Or will He send the Fool back out down the path, a living clay, still being molded, refined? How this will end, only the Potter now knows. 

But as we move on, please take heart by this visit. The Fool may be empty, crushed, and fragile, but he is still the Potter's treasured creation. This wondrous workshop, with door open to 

all, will welcome you too. 

And some day, if you should chose to walk up that wandering, meandering path, if you should happen across the flagging tottering Fool on his way to retirement, take his wavering hand and join him across that joyous threshold - life's alpha and omega to visit the Potter.

A party I can get behind

Imperial party t-shirt

Save the electoral college

Interesting discussion.

Save the electoral college

One economic fix...

Red Robot is doing his part...Uncle Sam needs YOU! :-)