Moving Day for the Blogosphere

I'm moving the blog!

I've opened mdsimants.wordpress.com and am officially moving to WordPress. There are a few reasons for this that all deal with plans for the future (think personalized domain, etc). Additionally, WordPress has a really nice BlackBerry client, so I can more efficiently blog on the go (assuming that I actually will).

If you read my blog in Facebook only, I've already synced my WordPress blog over, so that should be seamless for you. If you read this in an RSS reader, then point yourself over mdsimants.wordpress.com.

See ya on the flipside.

And the journey continues....

Well, we’ve come to a new point in the journey.

Things have been relatively quiet since the last update. With the exception of a 4 or 5 day exacerbation in September and a 2 or 3 day one in October, there has been very little to report. In both of these cases, the exacerbation presented with a new symptom.

We had our follow-up with the Neurologist on October 20. Dr. Boop was concerned that there was a new symptom in the previous two exacerbations. Events such as that typically reflect new lesions and make Multiple Sclerosis a more likely clinical diagnosis. We briefly discussed long-term treatment options and he armed us with a considerable amount of information (inclusive of a DVD that was a veritable “cheese-feast”). Dr. Boop also recommended that we proceed with a new MRI Scan.

There’s a saga that I should insert here that occurred in the process of getting the insurance company to approve the MRI. I’ll spare you all the insanity, but will make this general observation: Insurance companies have absolutely NO BUSINESS making medical decisions. The MRI was approved after an appeal letter from Dr. Boop.

A side note to the insurance saga (and an element of it that is truly too good not to share), the denial letter both APPROVED and DENIED the MRI in the SAME PARAGRAPH of the SAME LETTER – in back-to-back sentences. Seriously. I can’t make this stuff up.

At any rate, the MRI was conducted on 11/2. Dr. Boop contacted me on 11/3 with the results of the MRI. There were two lesions. These are the same two lesions that existed on the June scan, and there were no new lesions.

However, over the past few days, I have been experiencing off-and-on issues with tremors and other symptoms – including another new symptom. This one is actually kinda cool, in that it is an issue where I get a tingling in my spine and out toward my arms. It’s like when you get a cold shiver. This started yesterday morning. I can force this symptom by turning my head or dropping my chin, which is a clinical test called Lehrmitte’s Sign.

While on the phone with Dr. Boop, I mentioned this issue. He stated that even though the MRI was unchanged, the presence of this new symptom and the earlier new symptom confirms that this is Multiple Sclerosis. He further said that Multiple Sclerosis is the only real explanation for the collection of symptoms, and their appearance/disappearance/reappearance/etc.

What’s next? Based on the continued issues with and the length of this particular exacerbation, Dr. Boop has written a prescription for Prednisone. This is a steroid treatment that will help alleviate the on-going issues with the exacerbation. Additionally, we are beginning the process to get insurance approval (please refer to an earlier paragraph for my opinion on that statement) for Copaxone, which is a disease modifying treatment (daily injection) that works to minimize the frequency of and impact of future exacerbations.

For those of you wanting to know what directions we need/want prayers, good thoughts, karma, etc:

• Wisdom for Dr. Boop and us to make wise decisions as we go forward in this process

• Insurance approval for Copaxone, which is an extraordinarily expensive ($30k/annually) drug if you don’t have insurance. With our insurance, we will be able to get this treatment for about $500/year, so we need the insurance company to approve the drug

• Steph and I to have wisdom/understanding/etc for explaining this to Emily (and later to Caleb). Em is, as you all know, one smart kid, so this should be easy, but never something that you WANT to have to do. So, maybe the direction here is more for us to have the strength/emotional stamina/etc to explain.

• Strength (physical/emotional/etc) for Steph as we continue on this journey. She’s been unbelievable through this and I am so incredibly thankful to have her by my side.

We appreciate all that you have all done for us. Your kind words, prayers, positive thoughts, offers of help have been overwhelming to us. We find ourselves in a fantastic position to be surrounded by so many wonderful people.

Back above 10k!

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Caleb decided to help write my paper on Competitive Models

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You Decide the Quality of Your Day

Bob Whiteley, who pastored at the church that I attended while a student at the University of Arkansas at Fort Smith, once said: "The first thing that you say in the morning will determine the quality of your entire day."

If you start the day with negativity, then your day will likely be negative. On the other hand, if you start the day with positivity, then it will likely be positive. It is up to you to make the determination on what type of day you will have. This is not to imply that if you choose positivity, then nothing negative will happen. Rather, your response to the negative will be positive. It all starts, though, with your choice when you get up.

This morning - after five hours of sleep - it would be easy for me to start the morning negative. Yet, I'm going with positive. Not with an "oh #*$@, it is time to get up," but rather with an "it is time to go make a difference."

Human nature (learned, not inherent) is to go negative as soon as possible. Yet, Paul tells us in 2 Corinthians 5:17 (TNIV), "Therefore, if anyone is in Christ, the new creation has come: The old is gone, the new is here!". Further, Paul writes in Romans 12:2 (NLT) that you should "let God transform" you "by changing the way you think.". However, God does not forcibly change your mind; rather, God waits for you to allow your mind to be changed.

If you start your day by giving over the selfish, negative thoughts and words, and you allow God to have the reins of your mind, then positivity wins, and your day can be positive.

Bringing us back to Whiteley's comment "The first thing that you say (outloud or internally) in the morning will determine the quality of your day."

UPDATE: Thanks, Pam, for calling attention to Proverbs 18:21 (TNIV): "The tongue has the power of life and death, and those who love it will eat its fruit." (God's Word Translation translates the second phrase: "and those who love to talk will have to eat their own words.")


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Caleb Watching Football

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Caleb's response to being recruited by Baylor football team at Taco Cabana

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Best Bar-B-Que in the civilized world

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Kids say hey....

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Working Hard today....

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USS Lexington

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Caleb enjoying the ride...

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Caleb

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My (From Experience) Argument for Healthcare Reform

For those of you who have been following the Simants’ medical saga: “In Search of Michael’s Brain”, I apologize if the next few paragraphs are a bit redundant to you, yet you will pick up a couple of tidbits that will help in understanding my arguments to follow.

BACKGROUND

12 years ago this November, I began a journey that was highly unexpected. After a very dizzy and blurry dinner on a Friday night, I began to experience slurred speech, tremor on the right side and difficulty walking. Over the following two weeks and three MRIs, countless heart tests, CT Scans, Visual Evoked Potentials, Visual Field tests, a spinal tap and more hospital coffee than anyone should ever be allowed to consume my lead doctor a neurologist named Webb concluded that I had a case of probable MS.

Over the next two years, a few more MRIs and another spinal tap, I continued to have occasional issues. Then in December of 1999, it all seemed to stop. More importantly it stayed stopped for the next 9.5 years -- save one brief interruption. In early 2008, I got dizzy and fell down the stairs. My PCP recommended that I see a neurologist. He ordered an MRI. He concluded that I did not then, nor had I ever had MS (yes, he had copies of all the records from 1997-9). When I pressed him to explain what had happened in 1997, he said it was a virus. A virus that in 1997 was unknown.

Between 2008 and 2009, I changed PCPs. At my first visit with the new PCP, I hand delivered the 1997-9 records and the 2008 records and had a conversation with him about each.

At roughly noon on Monday, June 22, 2009, it all came back like a song – a dizzy, blurry, shaky song. I called my PCP. He asked that I come in to see him. I did. I was hoping for a referral to a neurologist in town. Instead, I was told to go to the Emergency Room since he felt that I had a stroke. I tried to explain it was the same as 1997 to deaf ears.

We spent FOUR hours in Emergency Room waiting room (good thing it wasn’t a stroke). When we were finally called back, I tried to explain to the ER Doctor that it wasn’t a stroke or tumor or whatever, and he should go straight to MRI. Instead, he ordered a CT scan. After it was clear, he ordered the MRI. Then he consulted with a neurologist, scheduled me an appointment for the next day and sent me home.

When we saw the Neurologist the next day, he ordered a spinal tap (not sure why this wasn’t done when I was in the ER). When it came back clear he sent me to an Ophthalmologist to determine why I was still having vision problems, and hoping that the vision problems would help determine diagnosis. That brings us up-to-date.

COST/INSURANCE

I have insurance – good insurance. To date, the amount that Doctors have billed to the insurance company is $10,852. My out-of-pocket has been a mere $195. More important (and strange) is the amount that the insurance company has actually paid. This amount is $2,953. That’s a reduction of 73%. If you assume for a moment that the medical provider is still making a modest 5% profit, the actual cost of the medical service provided was $2,805. That is a markup of about 385%. In short, healthcare is ridiculously overpriced.

Assume for a moment, that I did not have insurance. How would I cover $10,852 in medical expenses? Assuming that I paid it off in monthly installments with no interest: 1 year: $904/month, 3 years: $301/month, 5 years: $180/month.

According to the National Coalition on Health Care (link), in 2007 46 million Americans were without health insurance and the number of Americans without health insurance is rising at the rate of ~1.15 million per year. Additionally, $100 billion each year is spent to provide medical care for those who are uninsured. $34 billion per year is spent by hospitals providing uncompensated medical care.

The cost of medical care for the uninsured or underinsured is being covered by the mark-ups that medical providers are billing that fall beyond their markup. By providing health insurance to all Americans, we will be able to reduce the cost of medical care for all Americans.

MEDICAL RECORD KEEPING

In the course of all of this, we have had several interesting episodes with medical records. We had a need to get the records from Dr. Khan (the Neurologist from the 2008 escapade). As we began to try to find these records, we discovered that Dr. Khan had skipped town to take a fellowship somewhere, and no one knew where. Additionally, he had apparently taken his records with him, burned them, used them for wrapping paper or left them in a ditch next to his old office. They were no where to be found. Finally, I called the office where my old PCP had worked on the off-chance that he had actually sent them over. After three phone calls, $25, and 45 days, we finally received those records. Buried deep within were the write-ups and dictation from Dr. Khan. Very sketchy, sort of misleading and quite evasive, but they were there.

The records were given to my new PCP (Dr. Ford) less than one week prior to my visit with him on June 23. The record packet that I had given Dr. Ford was 105 pages of information that provided nearly conclusive evidence that my June 22 episode was not a stroke. Yet, at any rate, he chose to pursue my symptoms as a stroke. Clearly ignoring the 105 pages of information, he insisted on sending me to the ER to explore a stroke.

In the Emergency Room, even after hearing that Dr. Ford had records that would indicate otherwise and that my symptoms began with a sudden onset some 28 hours earlier. Clearly past the “point of no return” for stroke patients or the impact of the majority of anti-clotting medications that are typically given. Yet, a CT Scan was performed – needlessly. A CT Scan that was billed at $1889 and a reading of the CT Scan that was billed at $198 -- a wasted $2087. Finally, an MRI was ordered, but to look only at the brain – no C-Spine, no Spinal Cord. Even though my story had been told and the CT Scan was clearly normal, they continued to think Stroke.

When Dr. Boop referred me to an Ophthalmologist, I was left on my own to find one. When I did, the Ophthalmologist (Dr. Berry) asked me to contact Dr. Boop to have records sent over. Nine days later, sitting in Dr. Berry’s office I learned that he did not have the records from Dr. Boop. Now here is the kicker to this one. Dr. Boop and Dr. Berry both work for Baptist Health System. Their offices are “a line drive to left center” from each other. Dr. Berry had to call Dr. Boop and have the records faxed -- seriously, phone call and fax.

I have either had terrible luck with medical records, or there is a serious gap in medical record keeping. With the technology that exists today, it is far outside of my realm of understanding why such a gap exists. There needs to be a considerable investment made in the centralization of medical records. This system should be secure, yet contain the ability for the patient to access their full-range of records (including test results, films, scans, etc) on a whim. There is no reason that phones/faxes should be used to transfer records. Patients shouldn’t have to hand carry records from doctor-to-doctor.

Additionally, doctors should be held accountable for not taking time to read and understand a patient’s medical history. I understand that this will require more time to be spent per patient, yet at $200 for 10 minutes is that really too much to ask? If Dr. Ford had been paying attention 5 days prior to my visit with him on June 23 or had looked through my records before walking into the exam room, then he would have known that it was not a stroke he was dealing with. He would not have sent me straight to the ER. He would (and should) have made a referral to a Neurologist and called it done. The question that I am continuing to struggle to answer is if I should continue to see Dr. Ford, or should I go elsewhere?

ELIMINATE UNNECCESSARY TESTS

As I illustrated in the above story, the Emergency Room continued down the wrong path, even after they had been told it was the wrong path. They were insistent on continuing to pursue a stroke that did not exist. This caused an unneeded CT Scan and an inadequate MRI Scan to be performed. As it was the MRI showed two small areas on the brain, yet because it did not include the C-Spine and Spinal Cord other areas susceptible to MS-related lesions were not scanned.

Additionally, while in the ER, I was tapped for an IV – that was never accessed. I was given an EKG and connected to real-time monitoring – again unnecessary.

MY CONCLUSION

I am not a medical professional. I am not a politician. I am only a person who has followed a twelve year path and learned a few things along the way. In my experience, the healthcare system is broken. There are far too many gaps in information sharing and there is a wide gap between billed costs and real costs. It is time that this issue is corrected.

My Unexpected and Unrealized Brush With Grace

Piano. Proficiency.



Say those two words to an Undergrad Music Major and beads of sweat, uncontrollable shaking, sobs, running in circles, and other extreme symptoms of anxiety. For me, those two words were the bane of my undergrad existence.



I took private piano every semester in my undergrad program. I loved playing everything that was not directly related to piano proficiency. Consequently, piano proficiency stuff only was given a single (maybe double) run-through while everything else was practiced.



Now, I should at this point interrupt myself to remain completely forthcoming. I am not - by any stretch of the imagination - a great pianist. I never was. I never will be. I would much rather just sit down and improvise than actually play something out of a book.



The problem was that no matter how many private piano lessons I took the piano proficiency was not progressing. By now you are thinking (and you are right) that there is only one person to blame for that lack of progression. In my (poor and pointless) defense, like many thousands of other music students, I just never saw the point in learning how to play the Star Spangled Banner from memory.



The relatively sad part is that even though I wasn't progressing in the proficiency department, I kept receiving "A"s in my private lessons. Until that fateful semester when Dr. Bridgeman assigned me to Dr. McConnell.



Now, I am not sure how Dr. McConnell drew the proverbial short straw, yet was happy he did.



At the end of the term though I was still short of the bar required to pass proficiency and received a 'B'. Ouch.



I've given Dr. McConnell a lot of grief over the past few years about that 'B'. Most of the time in jest. Part of the time not.



I completely earned that 'B'. Well, in actuality, I probably earned less than that. So, yes, grace.



But that is not the end.



When it came time to graduate, all requirements met except one (well two, but chapel fines are another story) -- Piano Proficiency.



I remember it like it was yesterday (or more aptly last night's nightmare). Dr. Bridgeman administered proficiency exams. This was my fourth (or so) attempt.



Scales - check.

Hymn Sight Reading - check(ish).

America the Beautiful - check(ish).

Star Spangled Banner - oh hell.



It was bad. I don't mean "wow that was bad" kind of bad. I mean "cover your ears what the hell was that supposed to be" kind of bad. Dr. Bridgeman in a way that only she could do asked if I would like to try again. I only half-joking said not really. We tried again. Worse.



Ms. Bridgman then illustrated mercy. Opened the hymnal and said play. I did. Sorta. Better but still rough.



I passed.



Grace.



Not of my own merit. Not of Ms. Bridgeman's desire to get me the hell out of her office. Just simply grace.



I was reminded recently of this story. Dr. McConnell and I have remained friends. He has helped me through numerous major life events and still the hell I've given him over that 'B'. Hindsight is, as they say, 20/20.



In hindsight, I'm thankful for the grace that Dr. McConnell shared. I'm thankful for the grace Ms. Bridgeman illustrated.



I've heard grace defined as unmerited favor. It is the bridge that takes us from unsatisfactory performance to success. It is that thing that says we are worthy despite our own efforts at worthiness.



So, to Ms. Bridgeman and Dr. McConnell I say "Thanks". The lesson wasn't lost. It just took a while to learn.

Caleb feeding Emmie...from Papa.

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Caleb

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Truth in Advertising

The story (somewhat edited to protect innocent parties) goes like this:

We realized about two weeks ago that we were heading toward an absolute train wreck. We did not have adequate staffing to support our converted customer base and had about 10x that number of customers to support in just about six weeks.

With the training cycle being five weeks, we scrambled to develop a contingency plan. Our options were severely constrained by call routing, training space and trainer resources as well as the need to continue supporting the non-converted customers. Nevertheless, a (about 85%) good plan was developed. The scramble then began to determine how to support this brainchild.

The plan was to pull additional resources (~75) into training in two locations. The first location would train about 45 of the resources in a room that was ready to go and sitting idle. The remainder would be trained in an idle training room, but PCs would need to be installed. After a couple of phone calls and calling in my last favor from IT, they agreed to make it happen.

At 3p on Friday, before the room was to go live on Monday, I received the dreaded phone call. There was a problem with the power draw that the PCs required. So bad, in fact, that they could power no more than 12 out of 30 at a time. We would need an alternate plan. It doesn't take an experienced project manager to know that 3p on Friday is NEVER the right time to deliver a bombshell. Scramble begins.

45 minutes later, I receive another in a long string of phone calls. This one telling me that facilities would "make it work" and would do so by Monday Morning at 8a when training was scheduled to begin. I asked that I receive a phone call when it was done just to be safe, and was told that it was safe to assume that silence was indeed golden, and I would receive a call only if it wasn't going to be ready for 8a Monday. I know that I should have not agreed to that, but at 4p on Friday, I'll take it.

Crises averted. Right?

Sunday I sent three texts to two different people to confirm. Silence.

Monday, at 715a, resent the text from Sunday. Two replies. Both said exactly the same thing: "Yes, you are ready."

Monday, at 930a, I get an IM asking why the room wasn't ready until 915a.

Four days later, that question remains unanswered.

The morale of my tale is simple: "Just tell the truth."

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The celebratory glass of Armenian Brandy means the Masters degree is finished.

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An old pic of my boy

Taken on may 14, 2009.
 
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