Details....brace yourself.

Catharsis: purification or purgation of the emotions, primarily through art b: a purification or purgation that brings about spiritual renewal or release from tension.

Some of you have expressed the hope that this blog would help me as a mechanism of release and the definition above is what I expect it to be. I'm not sure that it rises to the level of "art" in some great way, but a "release from tension" is already assured. In that regard, it will be revealing of a deeper side of myself than many of you probably know or expect. My hope is that some of what I write will help others avoid some of the expectations, false hope and expense of going through the journey that we have gone through. On the other hand, hope comes in many forms and a distraction from an unwanted 'reality' can sometimes be a good thing.

In that vein, I think perhaps I should close the "mayo mecca" blog and start a new one, as I did with the Hawaii blogs, because in a very real sense, I don't believe that the Mayo clinic is deserving of the ire that may spring forth in some of what I will likely write about... that is, two years of following one path down a rat hole then another with hope of a beneficial outcome. Then again, maybe I'll just keep this one going and let the chips fall where they may. (Counsel on this point, anyone?)

The Mayo clinic is a special place. Having now been there, there is no doubt about it. The way the Drs communicate with each other, the way that they have no fear to share information or the way that they put Ego aside in the best interest of the patient was self evident in the care that we received. The speed at which they work and collaborate is awesome, yet born of a necessity given that people come from far away to be there and see them.

We heard several first hand accounts of the "amazingness" of the place. That is why we went there. What we found is that the Mayo is probably the very best at practicing medicine that is approved by the FDA, is uncontroversial, probably highly technical and crosses multiple medical disciplines. If you want a heart transplant, liver transplant, cancer treatment or brain surgery, by all means, go to the Mayo Clinic. This is my fairly uneducated opinion.

On the other hand, If you have been diagnosed with a disease that is incurable, has non-specific origins, has not been through sufficient clinical trials and testing pointing to a treatment regimen and/or cure, then don't bother spending the time and money trying to find it there. They are extremely competent, but they are also extremely conservative. They are not going to "practice" anything on you that they don't think is going to cure or help you. They are not interested in ringing up massive unnecessary bills in the name of "Mayo is God" and nobody else's tests apply, as we had heard. Our Docs were perfectly willing to look at and heed not only the lab results but also the narritive write ups of the previousl MD's we have seen. Of course, maybe this is only truth as it relates to someone coming in with an ALS diagnosis. I can only speak from my experience.

I will say that one of the other Drs we saw said, "they will take your paperwork from previous MD's, say 'thanks' and then throw it in the trash." This did not happen in our case. Our primary Dr. undoubtedly spent hours going through our papers, lab reports, MD notes, personal notes and even research on the web to things we had brought up between our meeting with her on Monday and our meeting with her on Tuesday. She brought in the "Senior guy" dr. Kumar, but also consulted with Dr. Aksamit who has experience with Lyme, other ID's and ALS, and also boiled all of this down to her own organizational form for reference as we went through it on Tuesday. She wanted to help us, she felt some of our pain, she teared up when she told us what she believed was going on with Heidi. She was human first and Dr. second. I hope she stays that way. She was young (as senior residents at the Mayo go) I'm guessing mid thirties.

We did not get the news we wanted. In fact, we got the news that we feared. The Mayo Drs essentially said to us: "Heidi has ALS, and though we wish we could do something about it, we can't. It does not matter whether this was caused by, is related to, is in conjunction with or is preceeded by an infection or other condition of some sort (i.e. ectopic pregnancy, emergency surgery, blood transfusions, Lyme disease, Bartonella, Babesia, etc.) that the fact remains that everything points to ALS and there is not a cure, nor is there any real treatment that can change the progression or life expectancy of the patient or alter the course of the disease in any real way.

The options left to us, as far as they are concerned, are "managing the disease" so that minimal pain and suffering is endured by the patient (aka, Heidi, my wife.) In this regard, the Mayo Clinic, in all it's glory, offered us nothing more than anyone else, and that is hard to take. I really mean them no disrespect in saying that, because in our unbelieveable, unfair, unfortunate and completely uncomprehensible circumstance, no one on this planet seems to have an answer.

For our part, we have not given up. Is there a dent in our hope? For sure. You can't be on the receiving end of the discussion mentioned above and not feel deflated. We are still trying to get this IPLEX drug that we have mentioned before. We are still hopeful that someone will come up with something before it's too late. We have been on a seemingly endless quest for something, which as I mentioned before, has led us down many paths.

We are still hoping for a miracle, and maybe it is only after all other hope is lost that this can happen. This has occured to me as well. What would a miracle be if there were a reasonable scientific explanation for it? Not a miracle, that's for sure.

Peace,
B.