Thursday, January 15, 2009

Getting back to the story

When you are given a diagnosis such as this, especially when you have lived a healthy life, it is very difficult to accept. How can one go from a rocking boot camp at 5am in the morning and eating a good diet, etc. to having a deadly diagnosis such as this as a 38 year old woman? Even Doctors that are friends of ours our friends of friends that heard about this way this is ALS, ALS is an "old man's" disease.

Well, we of course felt the same way, surely the doctors were missing something. Surely the root of this must exist in the blood transfusions that H received in her emergency surgery. So we vigorously pursued this path. The most likely culprit being Lyme disease. What we did not know is that Lyme disease is a VERY controversial disease, especially in the absence of a known tick bite in an area known to be infested with affected ticks like the North East of the USA.

This angle opened up a huge area for us to explore. After all, going from 100% perfectly healthy to an ALS diagnosis shortly after massive blood transfusions and emergency surgery is just too coincidental to accept. So, down the path we go.

We had heard of a Dr. in Colorado Springs named Dr. Martz that had been diagnosed with ALS, was wheelchair bound and later diagnosed himself with Lyme disease, treated it with a regimen of long term IV antibiotics and subsequently was 'cured'. We attempted to contact his clinic but were turned away because he had ceased practicing in the mean time. We heard the his PA was starting a clinic, but was not ready for patients. So we hit a dead end there for the time being.

As a result, we decided to find "the best Lyme literate Doctor in the country." In doing this, it is important to recognize that being a Lyme literate Dr. is not a picnic. This disease is highly controversial and there are many claims on both sides of the coin. On one far end, Lyme disease is really a bio-engineered disease that the Nazi regime refined to weaponize in WW II and was contained post-war in secret labs outside of, coincidentally, Lyme Connecticut. It is a documented fact the the US hired an ex Nazi PHD/MD to run "lab 257" on an island off of CT to develop this disease as a potential bioweapon. I won't belabor this particular theory, but if you are interested, you can read a book that is well documented called "Lab 257" that was published a few year ago. It is a scary, scary story.

On the other side, Lyme is just a bacterial infection that can easily be treated with antibiotics and forgotten about once it's over. We don't know what the truth is at this point. We hope someday, someone will know.

Being Internet aficionados ourselves, we found a wealth of information about Lyme disease, it's insidious background and it's connection to lots of diseases including ALS. More and more we were convinced that H's deteriorating condition was the result of a Lyme infection brought on by the multiple amounts of blood products that she required during her emergency surgery and subsequent problems.

Of course, none of the Neurologists that we were seeing saw any connection whatsoever (professionally) and that this diagnosis was not the result of the blood. In fact, they said that this was a ridiculous path to follow and was a waste of time. Were we from CT? Had we travelled there? Did she get a tick bite? No, No, No. BUT she did get almost her entire blood supply replaced over a 3 day period. Does that count for anything?

We had to pursue this angle, regardless of what the Neuro's said. So we did. As I mentioned we scoured the internet for someone that would hear our case. We found Dr. Stephen Phillips in CT. He was a Yale guy and had a history of helping people with "chronic lyme" infections. Our case is odd because of the blood transfusions, but he saw us anyhow.

After going there to meet with him and a huge list of symptoms and tests, he clinically diagnosed Heidi with Lyme disease and was willing to perscribe medicine to treat it. This treatment regimen essentially involved fairly high doses of antibiotics to kill off the pathogens taken orally. We started this treatment after that visit in early August of 07.

Quick note re: background and how to use this blog

Eddie Esparza forwarded an email I sent him to his list, so I imagine that some of those folks will wind up here on this blog. For those of you who might not know how blogs work, they read "back to front" so the first post is the last post in the archive on the right of the page. If you want to catch up on the blog, then start there and read forward from there. Otherwise, you can sort of read "backwards" by clicking on the "older posts" link at the bottom of each entry. If you like, you can "follow" the blog by clicking on the link on the right of the page and you will receive notification when I update it.

Here is a quick list of what I plan to cover in coming posts:
Hoping for anything but ALS.
Lyme disease - our time and money spent going down that path.
Homeopathic: Experiences with that
Lithium: Experiences with that
Naturopathic/Supplements etc.
Reiki - Energy work (weird)
Magic Rocks from a "medicine man" (sounds crazy, I know.)
Probably other stuff too. I also diverge from the story some about things that come to mind.

We also recently went to the Mayo Clinic in Rochester, MN to see their people. A Doctor buddy of mine called it "Mecca," so I used that in my blog. It didn't turn out to be a successful trip for us. I created a seperate blog about that trip during the trip, which is here:

As I touch on these topics, i encourage any of you to post about any experience you may have had with them. If you want to write about something else related to this topic (ALS, Lyme, etc.) and have it posted here, I welcome any guest writers and will post your information with a note about it. If you have your own blog about this, let me know and i'll post a link to it.


Starting with Neurology in March 2007

Heidi was referred to a Neurologist as her general practitioner was suspicious of her weakness. Initially we were worried about MS. ALS or Lou Gehrig's disease had not even crossed our minds. Really, we thought maybe she just had a pinched nerve or maybe something a little more serious like a slipped disc or something.

Based on an initial exam, we were scheduled for an EMG. I described this procedure in my Mayo Clinic trip blog here:
The description is about 1/2 way through the post. Heidi insists that its "not that bad." It doesn't look like any fun, that's for sure.

I remember we were looking through a travel magazine featuring Tuscany in Italy and dreaming of going there on vacation with the kids. I remember the tech was super nice to us and she helped helped Dr. Pratt with the EMG. Of course when you have an EMG requested by another Doc, you don't get any results, and in all the EMG's we have had, we never get any results right away. In any case, the Doctor did not say anything about what he saw during the test. The scariest thing I heard that day was from the tech as she left. She took Heidi's hand and said "Take that trip to Tuscany."

Of course, denial is not a river in Africa, and to us that day it was just a nice gesture from a nice person encouraging us to travel and enjoy life. We didn't know that she probably could have added "because you don't have a whole lot of time to do that type of thing."

As you can probably guess, the results of the EMG pointed to a neuropathy. Because these were early days, and Heidi really had very minimal symptoms, he was not 100% sure about ALS, and was hoping for something called Multi-Focal Motor Neuropathy, which is an auto-immune disease that acts much like ALS but can be treated with IVIG, which is IV administered Immuno-globulin.

Once this battery of meetings and bad news was delivered, we were referred to the CU medical center to meet with their head of Neurology at the time a Dr. Hans Neville, who has since retired. Dr. Neville seemed like a nice man who's job, as far as we were concerned, was to find something that Dr. Pratt had missed and tell us that of course ALS is not our problem because it doesn't generally affect young women and that it is....anything else.

So, he did his exam, Heidi did a breathing test and he wanted one of the Docs on his staff to to an EMG there at the new Hospital, with probably higher tech equipment, etc. So, another EMG was done, and the same results were delivered to us by Dr. Neville on a follow up. Essentially this: Sorry, we think you have ALS, this is a non-treatable fatal disease, you probably have 2-5 years to live and there's nothing we can do about it except try to make your life a little more comfortable as you go through this. Pure Devastation.

Wednesday, January 14, 2009

A thought regarding, well...death. Don't worry, it's not morbid or anything :-) Wait, can you talk about death without being morbid?

RJ Neuhaus, a known Political Theologian died on January 9th. Having previously experienced a "near death" experience at an earlier time, he commented: “Be assured that I neither fear to die nor refuse to live. If it is to die, all that has been is but a slight intimation of what is to be. If it is to live, there is much I hope to do in the interim.”

"A slight intimation" Wow...I love that.

First I'll state the obvious: Everybody dies. Being born guarantees that. My opinion: It is the manner in which we live the defines us, not the manner in which, or when we die. I know somebody famous probably wrote that long ago, but never the less, I believe it.

That being said, it's nice to hear from someone that has been to the edge, looked behind the curtain, and is not afraid of what lies on the other side. This is not an uncommon sentiment among those that have been there.

My Dad, still alive and well in Oregon, has told me a story many times that is similar to other accounts I have heard or read over the years related to near-death experiences. When he was a young man, he was fishing in a river (you wonder where I got that bug from?) he fell in and a rock knocked him unconscious. As he lay drowning and drifting in the river, he found himself climbing a long staircase around a slow bend towards a bright light. He was steps away from the light when he was snapped back to reality as my Uncle Emmit pulled him from the water and revived him. His feeling is that if he had made it to the light, that he would have moved on and passed away from this life. The event has comforted him through the years and I'm sure his tale was meant to comfort me, though I don't recall what the occasion was or why I needed comfort at the time. When he was shot accidentally in a junk yard on "rat patrol" as a somewhat older, but still young man, he was not afraid to die, and when he went to Vietnam in 1967 and was being attacked by the North Vietnamese during the Tet Offensive in 1968, he again did not fear death. As he approaches a more ripe old age and undoubtedly moves toward a "traditional" demise from a chronological perspective (as we all do every day), I doubt he fears it now.

Here is a link to a very good Op-Ed by David Brooks on Neuhaus and his musings and experience related to this topic if you care to read on...


Tuesday, January 13, 2009

Feeling a bit sentimental tonight

For one, I am touched and amazed by Facebook. So many of my old friends and I have re-connected on it. I have received so many wishes of hope and support both on my "Wall" and in private messages. Also, and to maybe an even more important point, I have connected with people who have intersected my life at some point that I maybe didn't even really know then. Maybe they were an "upper or under classman" at my high school (Patch American High School will always be my high school, even though I only completed through my 10th year there.) Maybe they were someone I knew, but didn't really hang out with or whatever. Time tends to blur the harsh lines that are drawn in those young years by a class (i.e "84 RULES") by a "clique," by a sport or even by one event that no one can even remember now, yet seemed significant or hurtful at the time.

I've never been a quiet one. Lord knows that my penchant to speak my mind, right or wrong, has been both a blessing and a curse over the years. I have offended plenty of people without really intending to for the sake of having a good, reasonable argument about one thing or another. Or in some cases, just because I can be a total dipshit sometimes. In fact, I've probably offended more people by virtue of the latter vs. the former, more dignified manner of offense.

I'm thankful that my friends understand this about me and either humor me well enough to endure, or even better, like to have these squabbles and attempt to fish out a more reasoned understanding tempered by well formed arguments on both sides.

That being said, this brutality called ALS that has been beating us up for the past few years, I think, has mellowed me in some ways. I have always strived to be fair. Now I find myself striving to be good. I don't mean 'Good' in the sense that I'll now be a "good boy" and will concur with and accept a status-quo nurtured by society and pressed by those not interested in, or worse, in fear of change. No, rather, good in the sense that when decisions are made, that they are made with a pure heart bearing in mind the feelings and repercussions my actions might have on others.

There are lots of reasons to do things. These motivators can come from the most righteous and the darkest places. On the dark side live these awful things: fear, anger, spite, hate, selfishness, jealousy, pain, doubt, greed, etc. These are powerful motivators. Take them away from your mind and you can release a level of consciousness that leads to a personal freedom.

Try these: Faith, Courage, Trust, Generosity, Optimism and most importantly Love. That puts a new spin on things eh?

Now unfortunately for us all, we are human. (gosh that was not a very positive statement, but bear with me...) Cancelling the bad and turning on the good is not as simple as that. That's why I used the verb "strive" above (though spellcheck tells me that "strived" is not a word?) So, my friends, if you are reading this, know that I am striving. My circumstances are without a doubt beyond my ability to comprehend. I can't even ask the question "why?" anymore. I can only try to have the faith and believe that there is a reason for this that I don't understand, try to have the courage to stand against the darkness that pushes to command my mind, try to have generosity in the face of a disease that attempts to inspire things like self pity and doubt about our future. Try to keep Love strong in the face of fear and anger and not let them in.

At my 40th birthday party, I issued a challenge to everyone in the room. This was, of course, a rhetorical challenge, as I did not expect anyone to stand up to me on my inspired "podium" at Morton's during a speech at my 40th birthday party. :-) However, I stand by it now, and here it is: There is nothing more important than Love. The love of your family. the love of your friends (who are the family you choose for yourself) are at the top of this list for me. If this one emotion guides your day to day life, you will not be defeated and you will never have anything to fear. It is the only thing you can take with you from this life, and really, the only thing you need.

Some will say: "What about Money" Well, some wise young men once said "Money can't buy you love." Money does not make people happy, there are a massive number of miserable millionaires out there. Without a loving family and friends, the wealthiest man is a poor man indeed. That is an easy one.

Some will say: "What about Faith" Don't you need Faith when you die. Well, yes, I believe you do, in fact, I believe you need faith as you live, but again, the challenge is about importance, not about need. Without Love, you can't have faith in anyone, much less God. So, therefore, Love is more important.

So, more poignantly for me today, some will say: "What about Health?" Well, my friends, without love, Health is a myth. Someone without love is not healthy. Yet, I will tell you this, when health fails, Love endures and it IS what gets you through. Love carries me every day. It is the only thing that I really have right now, but it is all over the place and I feel it. It surrounds us and I know that it comes from you, from within mystelf, from people that are not even reading this blog that are out there sending it and from God.

Thank you for indulging my departure from the story. This, undoubtedly, will happen on occasion.

Peace....and Love to you tonight. B.

PS, I also appreciate your comments and support on the blog, so please do comment if you feel up to it. I know it was easier to comment on the earlier blogs by virtue of the content. Also, feel free to share it with anyone you think it might help. Just cut an paste this URL into an email or whatever.:

Monday, January 12, 2009

Ok, back to the story

In the summer of 2006, Heidi was having some trouble cutting the girls fingernails. It was troubling to her, but we didn't think all that much about it at the time. She hiked a 14'er with her friend, she worked out 4 or 5 days a week at 5am, etc. I noticed that she seemed to stay sore longer after her workouts, and she commented that she was slowing down in some of the "boot camp" style days. Again, with no frame of reference, we didn't really think anything serious was wrong.

That fall, we signed the Girls up to the "Bombers" program in Breckenridge for the ski season. Bombers is a great program where each girl is paired off with other kids their age and they each have one teacher for 7 ski weeks out of eight starting the first week in January of 2007. One of the great things about this program is that mom and dad ALSO get a free ski day because all the kids are off with their teachers on the same mountain. The girls were just now all old enough to do this, so we were feeling a bit lucky and with our mountain house 20 minutes from Breck, we had a great convenience factor built in to the deal.

So, we were SO stoked. Amazingly stoked. The stars were alligned for a great ski season.

Everything was going pretty well, but as the season went on, while the girls were awesome and getting great "marks"from their teachers, H was noticing that she was having a harder time doing simple things. I was carrying the skis, buckling the buckles, clamping the boots, etc. H just couldn't do it. Her hands were "locking up" in the cold. There were a few times when she fell that she couldn't get up without help. Towards the end of the ski season, we were skiing at Keystone with family and on the last run, Heidi fell off the chairlift because she couldn't get off of it at the top. She literally could not stand up at the right time. She was going to ride the gondola down from there, but it was closed so she skiied. We had to support her for a good part of the way down that last portion of the slope. It was pretty scary, and was probably the main reason we went to see the first neurologist in March.

Quick note: This is not happening now

One of my friends thought that this was happening now, and when you jump into a blog a few posts in, it is easy to be "lost" from a timing perspective. The posts that started this blog take us back to April of 2006 and are a kinda scary re-cap of the events that we suspect started this whole thing at least in some way. I will go through the early symptoms H had and then go from there. I don't know exactly what I'll cover, which is kind of good for me. Once again, my focus and hope is that someone out there will find this blog that is going through this and it will help them in some way. Peace, B.

Sunday, January 11, 2009

Note to readers:

Just in case you are coming in now, and are not familiar with how blogs work, this the most recent post of an ongoing story. The story starts at the bottom with the first post and subsequent posts pile on top. As the blog gets older, the archive on the right side of the page will be the best way to navigate back to the beginning of the story.

Conclusion of ER visit...

When they took H away on the stretcher, I was feeling very scared and was completely traumatized by what had just happened. Within a short period of time we went from stable in a relatively comfy room to a complete madhouse with Drs., nurses, techs and lord knows who else attending. I was sort of standing there, holding H's hand as much as I could, telling her between her bouts of unconsciousness everything was going to be OK and trying to make sense of the madness to completely alone in a hallway outside the OR doors wondering if it really was going to be OK. I started to cry there in the hallway. I had to get some air, so I found a side door and went outside and looked up. Please God, don't take her now.

Jack came and sat with me, we had coffee and a good talk. I think he told me something about his days in the army that he never told me before. Maybe it's times like these that you need to hear something like that to take your mind off of what must be going on in the OR. After what seemed like an eternity, but was probably about two hours, they came to find me and let me know that everything went fine and that H was in recovery and I could go up in a few minutes.

As we waited for her to regain her wits, I got a briefing from the Dr. that did the surgery. Something had gone wrong with the termination of the ectopic pregnancy and a blood vessel in her abdomen had "burst" and she was bleeding internally. The "leaking" of the vessel was the cause of the initial pain and then when we were there at the hospital it finally separated totally and wound up squirting about 2.5 litres of blood into her abdomen. This represented, I think about 1/2 of the blood in her whole body.

Of course, this blood had to be replaced, and so bags and bags of donated blood went into her veins. This shock to her blood system led to some issues that did not resolve right way. It seemed that her body was rejecting the blood in some way and was not creating new red blood cells at the appropriate rate. They kept us there, kept giving her blood and finally had to do a consult with a hematologist to try and figure out what was going on. Finally, they gave her some other plasma products, platelettes and something else which seemed to correct the issue.

Though we missed our youngest daughter's birthday party (the day we went in) we were going home on Heidi's Birthday. Many of us were given a gift that day, and it was H's life. She almost lost it, and didn't. Because of what we are going through now, with all the pain we are living with every day, I still have to give thanks for all the moments from that day to this one that she is still here. I will endure anything I have to to have even one more smile or laugh, or heartfelt moment with me or between her and the girls.

Heidi made a speedy recovery from that. it wasn't until a couple of months later that she began to feel some unexplained weakness in her hands. This is where the ALS story begins. I wanted to tell the story of the ectopic disaster because we have always felt that the proximity of it to the beginning of Heidi's weakness was too coincidental. Before that day, she was one of the healthiest, strongest, most active people I've ever met. Three or four months later, she couldn't cut the girls' fingernails.

Am I in an episode of ER?

The roads in Highlands ranch are bumpy. The soil here rises and falls with the seasons, and it is very difficult for the engineers that build these roads to keep them smooth and even. Everyone that lives here is familiar with the "ka thunk ka thunk" of driving in this area. It is not until you are driving someone that is in massive amount of pain and every bump hurts a little more that you realize what a problem this can be.

It's April of 2006, a few days before H's 38th Bday. The Dr. said "Go to the ER" so we are on our way to Skyridge Medical Center. The on-call OB from Heidi's clinic will meet us there, it's not her regular Doctor. We arrive at the Hospital at about 5am. The place is pretty desolate at this time on a Sunday am. We check in and get a room, the nurses hook her up to a BP monitor and some other things. When the Doc arrives, they roll in an ultrasound machine and go to work. Hmmm...nothing seems to be wrong, she almost discharges us based on a consult with the normal OB and the mysterious results of the ultrasound, but just for a measure of caution, they ask us to stay a couple of hours for monitoring. The Doc goes off to Starbucks to get some fuel for the day.

I on the other hand I am very concerned. I know H, and she can handle a lot of pain. She's had 3 kids and two of them with no pain meds. She seems to only have moderate pain now lying down in the room, but earlier, it looked like she was in more pain than any time EVER. So, everybody leaves the room and it's her and I in there. She is doing ok for a while, but then sirens start going off and bells start ringing, again, she feels pain an is beginning to get nauscious.

The ER doc comes in and it looks like her BP is crashing...80/60....70/50....60/40. Everyone is freaking out including the nurses and they say let's get her into "trauma 3." I'm really scared at this point and am holding her hand. She looks pale and gaunt, and scared too.

We get into the trauma room which is lit up like a christmas tree, super bright, all tile floor, no nice carpet and soft lighting in here. This place is for the serious business of an ER. They come in with forms to sign for H, who is barely conscious at this point, can't even talk, much less sign anything. These forms were approving the blood transfusions that she needed to save her life, as well as some type of consent/release form in case...who knows. She is throwing up, reeling in pain and looking completely frightened out of her mind. I probably look similar.

They inform me that they need to get her to into emergency surgery and within what seems like seconds, she is gone from there, gone from me and i'm wondering if i'll ever see her again.

Out for now. B.