Friday, March 27, 2009

OK, this one a long time coming...Mindy...Why?

So, I've said many times that I want to save people that are going through this some headache, heartache and potentially some money. I have had a long time to think about this post. I have hesitated, because generally, I try to stay positive in my posts here, but I felt like our experience with Mindy Goodin at Creek Trail Medical Clinic in Colorado Springs, CO was worthy of a post. I wrote this post several days ago. Since then I've considered many things, but at the end of the day, my beef is justified. My questions are logical and my motivation is not coming from a place of anger. Mostly i'm mystified and confused. I'm also disappointed, and you will see why below.
I've also trusted this post, in advance, to people in the ALS community that I have met through my outspokeness about these issues and the resounding message was essentially that I "have" to post this, for the benefit of others. So know that I don't do this out of anger or personal rage, but out of hope for answers and hope for perspective, both for us and for others who may have had the same, similar or might have the same experiences.

I'll write this as an open letter in order to give her an opportunity to respond publicly. I imagine that eventually, someone will make her aware of this post. I will try to state the facts as I know them. If anyone has a great success story from their treatment from Mindy, please feel free to post it here as well. I'm asking questions that I feel need to be asked, and I feel that the public should be aware of our experience.

Dear Mindy,

We were desperate to find someone who would listen to our suspicions about Lyme disease. We had tested positive for a few "titers" and a few co-infections for the disease. As it turns out, these labs are famous for positive results. Lyme disease sucks worse than most diseases, but it represents hope, believe it or not, for people that have been diagnosed with ALS. You gave us hope. You "believed" that H had Lyme disease and some co-infections and you were willing to treat it.

You had worked with Dr. Martz, who "cured" himself of ALS by treating Lyme disease. He retired and you opened your clinic. You are a PA, who practices your medicine under an MD, who we never met and who probably rarely comes into the office. He's doing "research" on this, right? What's his name? Dr. Harvey? Never met him. Do PA's generally get $700 for an initial session and $225 an hour? I don't know. Seems a bit pricey to me. My work generally saves companies millions of dollars and I bill my services directly at $200/hr. But then again, what price can you put on "potentially" saving someone's life?

Well, H went under minor surgery at your recommendation to get a Groshong Catheter so she we could "easily" administer IV antibiotics here at our home. We bought literally thousands of dollars of antibiotics and other medications from the pharmacy you recommended that is right next door to your office because "you are comfortable with them and they know how you want the meds prepared." We took them "religiously" for about 6 months.

We were stuck in our house for hours every day waiting for the drips to go into H's veins. When we started, H could walk a bit. When we finished she couldn't. Open meds required refrigeration, sanitary conditions were paramount. We adopted out (gave up) our cats. We could have gone on trips. I feel like we wasted a whole summer, and being honest, I'm angry about that because time is our only valuable commodity now.

Why did your main practicing nurse quit the week after she trained us on how to service the IV's? She was really nice, I liked her. She's really the reason that I advocated us going on your plan in the first place. It's not like you came across as the warmest person in the world at our first meeting. She was the one we bought in to, not you. So, why did she leave? I was wondering about that. Probably a good reason, but I'm curious. Maybe she'll find this and post. Penny, right?

All the time, H is in decline. Who knows..maybe it's slower than it would have been had she not been on the antibiotics. Who knows really? Isn't that convenient for you?

The emotional toll is enormous, so she goes on anti-depressants, two of them to be exact. Both of the labels say "do not discontinue this medication without Dr. supervision." or something close to that. You are perscribing these drugs. They are nothing to play around with, right?

A couple of months later, H has a breakdown and we come see you for an emergency consultation which you make time for, on a non-office hours day. Practically an intervention. Doses of drugs are increased. Tolerance is assessed. Tears are shed. I lay my heart out on the table and you pick it up and show it to H as a reason why she should not take herself out of the game. Figuratively of course, but this was the essence of the meeting. I've been through some serious shit in my life, this was about as serious as it gets.

Did you use me to keep a paying patient? (That's how I feel today)

About a month later we express some question regarding a "pulsing" strategy that some recommend with regard to long term antibiotic therapy to treat chronic lyme or other co-infections. H is on, I think 5 of them altogether. 3 of them IV and most days 3 hours spaced out over the day. Side effects can be adding up...we don't know really, but H is not feeling good, and definitely not feeling better.

We call to talk about this pulsing idea, and you tell H "You need to pick a pew and sit in it." Apparently you don't like anyone else's ideas about treatments. hmmm..pick a pew, like in a church? Are you God? We take a seat back in your pew for a while...

Later, H calls to tell you that we want to take a break from the antibiotics. It is a gut wrenching decision, but it is hard to do this every day, it is expensive and it does not seem to be working. Your assistant takes the call. You never call us back. Not once. To be clear, H didn't say quit, she didn't say we didn't believe in what you were doing and perscribing, she said "break." If you were not clear on that point, you would have been clear on that if you had bothered to call.

The next day or two an antidepressant is running out and we call to re-fill. You have already instructed the pharmacy to discontinue ALL prescriptions for H. ALL of them.

You know how depressed H is. You know that stopping anti depressant medication immediately can cause massive harm and suicidal tendencies. You did it anyhow. Were you mad at us? Were you disappointed? You already knew she was on the edge when she was ON the medication. What did you think would happen? After six months and all we went through with you did you care at all?

I am open to your response to any and all of the above questions. You probably have my number in your files. If you don't then that is also negligent.

You deal in human life every day. We deal with it in the context of our family. I don't want to be another number to you or a + sign in your ledger without regard to our reality. This is what disturbs me. You never called. It seems like you never cared, or really had any hope. I am very well aware of this, acutely aware of it, one might say. I don't fear the truth. In fact, I fear nothing.

Here's an example of justice:

57 months will give that person some time to think about it.

This is your chance, before I get really mad.

Thank you,


Wednesday, March 25, 2009

Shawshank and Hope

So, after so many of my friends on FB and in general have picked The Shawshank Redemption as one of their favorite movies of all time, we decided to buy it on PPV last night. Wow, what a film. Raw and uncompromising in many areas and not an endorsement of the prison systems during the period. That being said, it is an amazing story, well written, well acted, directed and the cinematography was amazing. I have always liked Morgan Freeman and Tim Robbins as actors (though I wish Tim would shut up about his politics.) Both did a stellar job in this movie.
If you have not seen it, or have not seen it recently, obvoiusly highly recommend it.

What I took as the core message from the film was the theme of "hope." I won't ruin it for you, but essentially The TR character "Andy" believes in hope as his salvation and the MF character Red feels that Hope is something that is a killer in Prison, especially to lifers as both of them are.

Hope is something that in my opinion that you have to hold on to, no matter what "they" tell you. Life without hope really is not living, it's more like dieing. Your vision of hope can change. You can always hope for something else.

With ALS, it seems like the first thing the Neurologists try to do is take hope away. They are the MF character. Not antagonistic, often very kind, very "understanding." They don't "wish" this on you. But they don't offer hope either. The TR character Andy knows that deep within him, no matter what happens to him (and boy do some awful things happen to him) he knows that there is a place that they can't touch, and that is his hope.

So let's all try to not lose that!