THE AGGREGATE EXPERIENCE - 11-08-10 11TH MONTH ANNIVERSARY!

EXTRA!
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EVENING EDITION
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"THE AGGREGATE EXPERIENCE"

11-08-10
(11TH MONTH ANNIVERSARY)

QUICK UPDATE!
(OR SO I THOUGHT!)


As I listen and dance in my chair to wildly funky “Dance to the Music” and “Going to Take You Higher” and other great tunes by Sly and The Family Stone and Graham Central Station I figured I’d take advantage of my state of mind and give an update on my weight loss and a few other incidentals involving my reentry back into “normalcy.”

IVIG TREATMENTS (THE BANDWAGON)

In somewhat disturbing contrast to the early position taken by the medical staff at the Ranch, regular administration of the IVIG treatments has now become standard operating procedure. It’s disturbing because it wasn’t too long ago when the medical staff outright refused to administer the medication despite the obvious absence of any objectively identifiable improvement in my condition.

I received the initial dose of the IVIG while in the Intensive Care Unit in early December. Astonishing as it may sound, when I asked the treating physician how the medication worked, he looked at me with an embarrassed dread in his eye and meekly replied, “I don’t know.” What? The drug induced fog which I was happy to be in, was suddenly blown clear and if I could have, I would have grabbed him by the overly starched collar of his oversized white medical jacket and screamed into his face only inches from my nose, “ARE YOU F!@#$%G OUT OF YOUR MIND!!?” “WHAT DO YOU MEAN; YOU ARE ADMINISTERING A DEADLY SERUM WHICH CAN KILL ME ON THE PRETEXT IT IS GOING TO HELP, AND YOU DON’T KNOW HOW IT WORKS!” Did I hear him correctly? Did I lose my brain in addition to being paralyzed?

As it happened, I couldn’t move my arms and my diaphragm was significantly compromised so yelling was out of the question. All I could muster was a nominally audible pleading “why don’t you know?” Aren’t doctors supposed to know everything? Where was Marcus Welby when you needed him? (For the young and unknowing reader Marcus was a TV doctor from 1969-1976.)

The doctor’s response was medical double speak. What he should have said was given the rarity of the syndrome sufficient research dollars just weren’t allocated. This lack of research left a want of understanding about the effects of IVIG, how it works, whether it works and an effective treatment regimen. The available research out there was also dated, incomplete and wholly ineffective given its erroneous predicate. Consequently, persons afflicted with the mysterious GBS were left to the whims and personal understanding of the treating physician; some patients were treated while others were simply abandoned medically and shipped to nursing homes to live out the rest of their miserable lives prisoners of their own body.


I was to be shipped out 28 days after I arrived while still a quadriplegic. We already know that story. Needless to say, I convinced them the path they were about to take was the wrong course and full of legal landmines.

Five months later I was working my ass off day after day with no significant improvement save impressive and continuous weight loss. I had little of any arm movement and required assistance from eating to brushing my teeth. By this point the doctors who first thought me dead had the “I told you so” attitude, and therefore we’re not going to do anything more for me because I was not improving. On the other hand certain individuals were professionally concerned with my lack of improvement given the amount of effort I was putting into my recovery on a daily basis. One person was P.A. Sally Davis.

Sally is a Physician’s Assistant in the 903 unit to which I was transferred in mid February. I wasn’t getting anywhere with the doctor in my old unit at JPI; now was a chance to speak to a new ear. I needed first to show her, however, I was real and prepared to do whatever it took to recover. Over the next couple of months I picked up my pace and increased my work-out regimen. I needed a partner and she fit the bill. She was smarter than most of the doctors I spoke with and she was empathic to my needs and genuinely concerned with my welfare. It helped she was from New York; no bullshit approach to medicine. I had a no bullshit approach to my recovery. I had an idea of what I needed to do, I feverishly worked towards that goal and she saw it. We clicked.

The time had come to campaign for another round of the IVIG. Nothing else seemed to be working and I was getting desperate and fighting bouts of depression. Sally had personally seen me work my ass off yet my improvement was nominal. There had to be an alternative so I spoke with her about another dose of the Jim Jones juice. Much to my surprise she agreed without much remonstration from me. She would later tell me she felt it necessary to “put all the chips in” given my forceful approach to my recovery. “If you were willing to put all of your chips into your recovery Rancho needed to do the same!” “When you have a patient willing to go the extra mile towards in pursuit of his recovery, the hospital has to match his bet and partner up. Chip for chip!”

The gears were now in motion. Sally began coordinating with the neurologist and the unit where the IVIG would be administered, 902. Everything seemed to be going forward until I spoke with the attending physician on the unit. Without mincing words he flat out told me that he had to first think about it given the medication cost and the need to have nurses available; in other words, no.

Well I immediately began to argue my case to anyone who would listen, “It will cost more to do nothing!” I contacted the Patient Advocate as well as Sally urging swift action towards the administration of the IVIG because the benefits substantially outweighed the costs. After meeting with the neurologist, he agreed with me and submitted his recommendation. The one misguided doctor was still the lone holdout. As luck would have it, another doctor came to the unit on rotation. He was the very same doctor who told me he didn’t know how the medication worked, just that it worked. (This doctor later told me months later he wrote me off. He said my condition was so acute he felt I’d never move again. I got that often. HAH!). Sally convinced him to agree to the medication. It was now the late May. For almost six months I didn’t receive any medication. The lapse in treatment sort of begs the question, doesn’t it?

At the time I received the second dose I had slight movement in my left arm and shoulder, I could barely lift my hand above my shoulder and only for a couple of seconds. My right arm was unable to move at the bicep and the arm could only be lifted just below the shoulder. My legs were still totally unable to hold up my weight; I was only able to stand with a brace wrapped around my bottom while holding onto a tall table, like a TV tray. It was now the beginning of June.

Over the next several weeks my improvement went beyond the anecdotal to being objectively measurable if only because it seemed to break the flat line measurement of previous weeks. My strength was increasing, my endurance was establishing new benchmarks with each try and range of motion seemed to increase. Two to three weeks after the serum I drove by the “write off” doctor who asked how I was doing. Almost automatically I raised my right arm way above my shoulder like I was hailing a New York cab, and said “GREAT!” Yes, I was trying to illicit a response of surprise; if I were counting on another treatment people needed to see marked improvement. If I had to dive off a ten meter high board I would have done it!

My demonstration worked. I was soon scheduled for another round of the medication.

On June 29, 2010, I took my first steps. During the preceding six months I was unable to stand on my own. Within twenty odd days of receiving the IVIG I was not only standing but I was also walking!

Since the second round I’ve had two more treatments at Rancho and two treatments at home with ten more treatments scheduled over as many months. Wow! Is that a change in treatment philosophy? The change of position with regard to treating me came about because of the perceived correlation between my recovery and the IVIG. As noted, my progression over the preceding six months was remarkable only because nothing was happening save significant weight loss. Once the IVIG was administered I broke through the proverbial glass ceiling where my progression curve began to ascend at a greater rate.

During a painful nerve conduction examination at USC I met up again with the original doctor who saw me in December and later ok’d the second IVIG treatment. He flat out stated that there is a big question of whether I would have recovered sooner had I been given the IVIG treatment early on instead of waiting for six months. I felt sick. In almost in the same breath he lauded the effects of the medication and seemed newly converted to its still unknown impact on the syndrome. I felt sicker. Where was his endorsement six months ago.

As P.A. Sally later said to me; as a direct result of my reaction to the IVIG I have re-written the way Rancho and the County of Los Angeles treats its GBS patients. Prior to my admission a GBS patient would be given one treatment during the initial intake and left to recover either at home or at a nursing facility. In either instance, recovery would be long in coming if it even happened. Now, GBS patients will be aggressively treated with IVIG with the goal of recovery. Only time will tell whether this change in philosophy will last beyond the immediate future. I’ll never forget the discussion I had with the doctor within weeks of my arrival at Rancho which centered on the need for additional IVIG treatments as well as extensive and vigorous physical therapy. The only thing the doctor could state was that I was “arguing against the paradigm of science.” I told him he didn’t know what the paradigm of science was because their position was predicated on an erroneous premise; therefore, any conclusion had to likewise be erroneous. Moreover, all medical papers dealing with the diagnosis and treatment of GBS were about 40 years old. For God’s sake, they didn’t know how the medication worked, or even if it worked. I then told him I would rewrite the literature, “follow me and Rancho will create a new paradigm of science!” I doubt the doctor still feels comfortable with his “paradigm.

After the third administration of the IVIG I bumped into the doctor who initially refused the IVIG. Well, he saw me walking. His eyes told me he was quite surprised. I called him over and asked him if my improvement was the result of the IVIG to which he profoundly responded, “I don’t know.” That was a comforting exchange.

Yesterday, I finished the second treatment at home without any major problems. The nurse does have a difficult time, however, at finding a workable vein. After the five day session my arms are covered with black and blue blotches from where she stuck me. It usually takes five or six tries before a vein is found.

WEIGHT

Understandably, weight loss has slowed if for no other reason than because I don’t have that much weight to lose. Additionally, I am gaining strength which necessarily means I’m building muscle, for example, my right bicep which has not worked at all has now fully come back into action with complete range of motion. Not only can I now bend it at the elbow but I can also support weight with it, a couple of lbs. Increased strength translates into increased muscle fiber which has more mass than fat.

Nevertheless, I dropped another pound to 170 lbs. for a total loss of 133 lbs. in ten months. I’m five pounds away from my original goal of 165 and only fifteen pounds away from my revised goal of 155 lbs. Who knows, maybe I’ll try 145 lbs. Keep in mind, the lighter I weigh the easier it is to get about. That is my primary goal. As I get stronger I will worry about gaining some weight back, but until then continued weight loss is the stated goal. Although my skin is re-absorbing I probably have at least about 10 lbs of it hanging around. Who has the knife?

PATIENT ADVISORY BOARD

One of the items of interest stemming from my determined advocacy is the seat on the Patient Advisory Committee. Our second meeting is scheduled for this Friday where we will earnestly begin developing new ways to bring the patient into partnership with the doctor to actively help in the coordination of his/her care.

Hospitals around the country are preparing for the changes brought about by the health care reform bill which, among other things, will affect how a hospital is paid by the government. If the hospital does not achieve certain benchmark scores, insurance payments will be reduced on the simple theory that if the hospital isn’t performing then it shouldn’t receive the same payments as hospitals which are reaching the threshold levels. Consequently, the hospital needs to sell itself.

I am asking everyone for your help. I’m sure many of you have had experiences with hospitals involving yourself, a friend or a loved one. If there was something which you felt could have been addressed which would have made the hospital stay a better experience let me know. I will then review your idea and see if it could be applied to Rancho, if it could I’ll submit the concept for discussion. So please, seriously think about it and get back to me with your ideas or thoughts.

As always, remember “It could be worse and there is always tomorrow!”

TAKE CARE.