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Missing Parts: Amputation

Today is the surgery to amputate. I didn’t push the issue when I got back, I put it off as long as I possibly could. The gangrene was progressing, but slowly. We did more testing on the area to see if there was any useful data to gather or rule out certain root causes. But mainly for me, I needed to try to recover as much strength as I could first. This surgery and recovery will take a lot more energy than my body has available, causing my baseline to go down further. I simply cannot afford for that to happen, especially since I’m already much weaker – too weak.

biohazzardPictures of my feet, ankles and legs can be found HERE. I have them hidden since, while not at all grotesque, it’s not exactly pretty. I am sharing for those who may have similar issues or are otherwise morbidly curious.

I still have not nearly recovered from the FDA, my baseline is still much lower than before I left. That means my daily best is much worse than it was, and so is my daily worst. My entire body is heavier and I am still much weaker, slower with less charge in my batteries. I drain much faster now and recharge slower and a list of symptoms/issues are far more severe. I am in intense pain, layers of pain. I feel more easily lost or confused and I strain to read or see tv since my vision is more doubled as I tire further. Typing this is a struggle, and getting my words to make sense has taken 3 days so far.  I have little stamina – I struggle more to get through a minimal activity, housebound day and small tasks like making my morning eggs are now much more difficult, if not impossible. In fact, I’ve only made my eggs once in the two weeks since I’ve returned from the FDA. By early to mid afternoon I am completely spent even though I have done nothing all day and the pain is unbearable. I am further removed from my family and from my life.

I absolutely knew this would happen, but I did it anyway. This outcome is nothing new to me, I go through this often after I spend too much energy. Sometimes worse than others. Clearly my energy was well spent though, it was worth it and I would make that same choice again without hesitation. But I’m in rough shape. The thing is, this really is a simple surgery that a normal body could handle just fine. But my condition/baseline is fragile on my best days and I get much worse for months from even a simple cold I catch. Anything that causes my body to use more energy can have unreasonable consequences. This surgery and recovery will cause my condition to deteriorate much further and I will suffer brutal difficulties and pain that are on top of and unrelated to the surgery. I assure you that what I experience on my best days goes far beyond a healthy persons worst nightmare.  So… this is going to suck. No doubt. But this is just what happens when the body’s cellular energy factory is broken. This is the beast that I fight. Every day.

I am an exotic species now. “Modern medicine” is still at it’s infancy in understanding screwed up amputationmitochondrial issues, special techniques/care needed and the implications on the human body. In fact, today I have to bring the protocol for mitochondrial patients to the Anesthesiologist to ensure I am not permanently harmed – this is just not something they know about or know how to deal with. I no longer feel safe in a hospital or around Doctors. Especially as my energy drains and communication becomes even more difficult for me.

While I know that I am in good hands, and these Dr’s are the best in the area, I still fight the fear that something will go horribly wrong. A realistic fear for mitochondrial patients, and let’s be clear – Like most in my position, I haven’t had too many comforting experiences with Doctors since Doctors first poisoned me 7 years ago.

The gangrene only got one toe, so that’s great. But the Levaquin induced micro-vascular issues that caused the tissue to die in the first place also covers other toes and are all over my foot and legs and to a lesser extent my entire body, face included. So now I face the very real fear that I will lose more to amputation in the near future. After 7+ years of daily torture, I now fight to remind myself that I haven’t lost just yet. But somehow the thought of even a small amputation really makes me feel as if this is the beginning of the end. In my head and heart I know that’s not true, but it sure can feel like it if I let it.

One of the reporters I spoke with shared with me a story of her father who battled significant illness and lost a considerable amount of body mass, and how that was hard on him. Obviously I too understand that mental battle all too well. When I accidentally catch a glimpse of myself in the mirror now I see how much smaller I am. How much weaker and more fragile I am and that does really make it hard to keep my head up at times. It’s hard not to think I’ve already lost. 

But I must remember that I have fought way too hard and survived through way too much to let something this simple get to me, I must remind myself of my strength. I must remind myself of all the inner fight I’ve routinely demonstrated and all I’ve overcome so far. I must not falter, I must not let my fight fade. I must remind myself that I am Superman to one beautiful little boy.

I must not fail my son.

I don’t know that I have a clear point today. I am not doing well and I am struggling to keep my head up at the moment. I will do just fine, I always come out with my head held high. I guess I just needed to get this out and mark yet another moment in my fight. Thank you for reading and I love you all.

Your Brother in Fight,

/M

Gratitude and the Human Component

Several people have asked that I re-post this here for all to see. The world needs to be filled with more moments of humanity like this, just two humans coming together as strangers to live a moment of hope. 

I love you all.

Facebook 30 May 2014

Gratitude and the Human component:

Yesterday afternoon, an I lived an important moment. Since the time I spent bedridden, I had dreamt of the moment when I would be able to reach out to someone like me, one on one, and give them the gift of words, strength and gentle direction that I myself so desperately needed early on. I dreamt that one day, Id make a difference and touch someones life.

Yesterday, a very brave soul came to see me. She was scared and confused, just like I once was. She bravely sat with me while I gave myself an IV and we also went over my extensive supplement routine. She asked a lot of direct, quality questions and thankfully I was able to field those and provide direct answers.

She arrived a stranger at a strangers house. We spent a couple of hours together and she left as a friend. And although I can’t speak to how I’ve helped her, I can say a dream that I’ve held onto so dearly for many years finally came to be. I am grateful for the opportunity to share knowledge, some very hard lessons I’ve learned and some wisdom that I have most certainly earned.

This is the first of what I hope will be many opportunities to connect with another Human Being on a deeply truthful, meaningful and fundamental level. We came together yesterday and were able to just be Human. And I cannot be more thankful for the courage she showed and for her level-headed approach to hearing a complete stranger lay out some hard earned wisdom and technical knowledge.

I am weak and mentally exhausted. But I spent my energy wisely yesterday and it was absolutely worth it to me to feel like I’ve made a difference. And Id like to thank Lori​ for her courage, gentle demeanor despite substantial hardship, and for giving me an opportunity to make some of the suffering worthwhile.

I’m not wording this as well as I would like, and I’m not sure I have a clear point today. I’m really worn and slow today. I just wanted to share this moment in hopes you can take something away from this.

No matter how little you have, or how weak you are, never ever discount your ability to touch someones life. What if this world were filled with moments like we shared yesterday?

Discuss.

Michael Kaferly IV one on one

Live long enough to testify before the FDA to ensure that NO ONE ELSE will end up like me for a cough ever again… Check

Michael Kaferly in front of the FDA

Michael Kaferly set to testify at the FDA HQ in Silver Spring MD on November 5, 2015 – preparing to unleash 2,585 days and nights of torture.

On November 5, 2015 the FDA’s Antimicrobial Drugs Advisory Committee (formerly known as the Anti-Infective Drugs Advisory Committee) and Drug Safety and Risk Management Advisory Committee held a special hearing on the safety of Fluoroquinolones, especially when used as a first line of defense. This hearing lasted all day and included a team of Dr’s, Scientists and Execs from Bayer, J&J and Pfizer who were on hand to give hours of testimony that their drugs are safe.

The intent of the committee was to revisit the issue to determine if the benefits really do outweigh the risks when prescribing for sinus issues, bronchitis, UTI’s, colds/sniffles/coughs.

I heard about this hearing about 3 weeks in advance, giving me time to rest and save energy to attempt to make the trek to the FDA HQ in Silver Spring MD. I should have been having surgery to amputate at least one toe from the damage Levaquin has caused. A few days before I was set to leave I cancelled on going to the FDA. My baseline was far too low and getting lower, I was weak and getting weaker. My foot was in so much pain, as was the rest of my body. On top of my condition, logistically I didn’t think we could do it. The world still happens too fast and while my intellect is in tact, my mind gets slower as my energy drains. Michael Kaferly just before FDA testimony There would be no way I could do this without significant, constant help. I needed a seeing eye human to help care for me and keep me safe and it started to look like there was no way for me to be safe, no way for me to be able to stop the world once I “hit the wall”. But this was far too important to miss, no matter the cost. My mother accompanied me and pushed the wheelchair, made sure I ate, made sure I knew where I was supposed to be and what was happening.

I was already becoming weak from the trek to the FDA and beginning to have tremors, my energy was draining so fast – and I’m sure the stress of knowing the people who did this to me were in that room had a huge impact. Stress and anger immediately make my symptoms worse in a way that I would only describe as a violent reaction in my body. I tried to keep myself as calm and grounded as I could, but there’s no doubt that had a huge effect. This is a known issue for severe mitochondrial patients as the body uses so much energy when in a stressful state, and for those like me it is more energy than we have available and an “energy crisis” is triggered.

Between the help from my mother and the help of all of my fellow warriors, I was able to make the trek.

My testimony was a compilation of many “scraps of paper” and recordings. It was an enormous struggle to get words out and arrange them so they made sense. But that day, the universe guided me and allowed them to flow. The complete transcript is found below.

Full Transcript:

Good afternoon. My name is Michael Christian Kaferly. I have no affiliation.

In Sept 2008 I was prescribed Levaquin to clear a chest cold before a minor surgery. There was no testing done to determine if I had a bacterial issue. It was given to me JUST IN CASE. Soon a nuclear bomb detonated inside my body. I quickly went from an intelligent and healthy man who worked out almost daily to being bedridden, unable to understand the world around me and in horrific pain not of this earth. For much of the first 18 months my entire body would become too weak and too heavy to move – not even to use the washroom. At its worst I was so weak I could not hold my head up, chew food or even produce a voice to tell my little boy I loved him.

Our search for help took us coast to coast. Among my list of diagnosis are Autonomic Neuropathy and mitochondrial damage. Testing shows my body has suppressed cell replication, which is the explicit mechanism of action of the drugs that we’re here to discuss today. My full list of diagnosis and symptoms spans across multiple systems and is far too long to list here.

I have fought this monster for 2,585 tortuous days and nights, but I am hardly improved. While I have good and bad days, I am never well and I rarely leave the house. I am like a defective battery that discharges far too quickly and doesn’t recharge correctly. I have a minimal and unpredictable energy supply to fuel my muscles, systems and organs. That means as I tire, my entire body gets progressively weaker and heavier. My vision worsens and I can become confused, frail and weak many symptoms become unimaginably severe including layers of unspeakable pain. Even though I’ve rested for weeks to be here today, this trip is dangerous for me and I will suffer devestating consequences for the energy spent.

Abandoned by the very medical system that did this to me, I have been forced to give myself over 475 IV’s to help manage some of the horrific symptoms Levaquin has caused.

I made videos of my IV process to help other victims – one of which has over 15,000 views. There are many more like me.

Modern medicine offers no cure for my mitochondrial disorder that began as a result of taking Levaquin. It is imperative to manage symptoms to prevent this disorder from progressing, but the only known therapies are not covered by insurance. I can no longer afford the extensive supplementation and IV’s that helped me to fight back. I have been forced to go without and my condition has deteriorated significantly as a result. Until a few weeks ago my family was homeless again. When I get home to my little boy, I face immediate amputation from the damage Levaquin has caused.

In 2008 there was no warning about Autonomic Neuropathy or mitochondrial damage. Just tendon issues. If the FDA protected me and allowed me to make an INFORMED decision, I absolutely would have chosen to keep the cough. The salesmen are here today to tell you their drugs are safe, but you already know this class of drugs CAN cause mitochondrial damage, I came all this way to look each one of you straight in the eyes and tell you that in fact, it DOES.

My little boy was 15 months old when my life was hijacked. Now 8, he has never gotten to know his father as a healthy man. He has been forced to see things no child should ever witness. My life and his childhood have been stolen in the pursuit of profit. I am here today for the hundreds of thousands like me, labeled as crazy who still don’t know what is happening to them. I am here for my son and for his entire generation, to implore the FDA to rethink how these powerful biological weapons that we call “cures” are labeled and monitored. Levaquin has unquestionably cut my life short by decades. There is no sane measure that makes this level of metabolic damage an “acceptable risk” except to those whose sole directive is to sell more pills.

Media outlets were on hand to cover this historic event. Just before I was set to testify, I met with a wonderful reporter named Jacqueline who aired this in Charlotte NC and another version on 10 more stations in 9 states. Below are two of the many stories, there were far too many for me to keep track of.  I will try to add the rest and update the media section as energy allows.

Michael Kaferly testifies before the FDA

Michael Kaferly Testimony_FDA_Media_Coverage 4

I began to hit the wall hard after my testimony and many of my symptoms were becoming violently worse. Luckily my seeing eye human noticed – as I would have been unable to articulate my immediate need – and wheeled me out of the room immediately following my testimony. I desperately wanted to stay to support my fellow warriors, but I had no choice but to eliminate all energy expenditures in attempt to stop the progression of symptoms/issues.

No matter the physical cost, it was clearly worth it.

After a full day of testimony by the Pharmaceutical industry,  the results were a landslide victory for all of humanity. The FDA voted unanimously, deciding that in fact the benefits do not outweigh the risks.

FDA Voting Results
I couldn’t be there for the end, my body forced me to leave immediately after I spoke. The FDA panel read their justification for their votes, below are just a few quotes from the FDA panels. Including the need to officially acknowledge “Fluoroquinolone Associated Disability” as a diagnosis to cover the constellation of strange symptoms that millions suffer.

“Education is important for the physicians”
“Uncertainty about the safety”
“Does not provide sufficient guidance for practitioners”
“Business as usual is not acceptable”
“Misuse has to be addressed immediately”
” FQAD-legitimate warning for this”
“Relying on the labeling alone is too passive”
“We have to act now”
“Need to extend who is at risk”
“Remarkable testimony today”
No first line of defense use
“Black box should be expanded-highlighted-raise alarm”
“Serious safety concerns-a flawed tool-need red flags-BIG red flags”
“The black box does not look serious to me.”
“Thank you to the Press and patients”
“Learned a lot today”

Again, the intent of the committee was to revisit the issue to determine if the benefits really do outweigh the risks when prescribing for sinus issues, bronchitis, UTI’s, colds/sniffles/coughs. They answered NO unanimously. To me, this means that I have lived long enough to fulfill a mission that I’ve had ever since these drugs caused me to be bedridden and unable to communicate. NO ONE will ever be poisoned by these drugs the way I was – for a cough. These drugs will no longer be allowed to be the first line of defense for minor issues. Which was far and away the bulk of the prescriptions . The drug companies lost hundreds of billions of dollars on Thursday, and I am proud to announce to my son and the world that we did it buddy. We did it.

WSJ Friday Nov 6 2015

Wall St. Journal headline, Friday Nov 5th 2015

I returned home safely, but I am in rough shape. This trip took far more from my body than I had available. I am far weaker than I was before I left,  layers of pain are exponentially worse and my baseline is far lower. The infection has spread further, but so far it doesn’t look like it’s gone past my toe – so I got that going for me. But the pain in my foot is so much worse as well, on top of all of the other symptom and pain increases across my body and across systems. I don’t know if I will ever recover to my previous baseline, or if so how long that might take. But this was a victory for every man, woman and child. I haven’t yet had the opportunity to process all thats happened, I’ve been slow the last few days. Right now I am still overwhelmed with gratitude that I was able to use my words for those 3 minutes. I couldn’t make that same speech today, nor on most days. But when it counted, I had words. And nothing can ever take this moment away from me or my son…

Thank you to all of my fellow warriors who testified and for all those who made this moment possible for me, and for all of the innocent and unaware who just dodged a bullet because of our sacrifices. Make no mistake, my hand has already been dealt. I have no dog in this fight; Johnson and Johnson decided my fate for me on Oct 6 2008. Nothing good can come of this for me personally, in fact, nothing but suffering will come for me after this. But I can look my little boy in the eyes and say that day buddy, we made a difference. And I taught my son that sometimes, you just have to take a stand for what’s right – no matter the consequence.

I love you all.

Your Brother in Fight,

/M

Live long enough to warn others… check.

I have been having a very rough time, more so than usual, these last 4-5 months. Especially the last 6-8 weeks, I have been locked in my shell again and communicating has been more difficult.

It is with a grateful yet heavy heart that I post this.

For years I had no idea what was happening to me (or what caused it) and my Doctors were equally as confused. I had issues and symptoms in so many systems at the same time and worse still, my mind was so heavily affected that I couldn’t understand, much less relay what was happening to me. In the early years, I held tightly onto the hope that I’d at least live long enough to tell my story and warn others. That time has finally come. On 30 March, CBS Denver aired my story.

I fought hard to make it to this moment, and to me it means more than I can say. I made it to a milestone, and I made it further than I ever thought I would. For over 6.5 years now I have lived with the understanding that I may not live until morning or that best case, I may never recover enough to speak intelligently about what is happening to me and/or get the help I desperately need. But with a lot of help, I did it. 

Both Nikki and my mother helped me prepare by role-playing which allowed me to practice getting some of the words out. I’m still in here somewhere, my intellect is mostly intact – albeit slow when my batteries drain lower. But I get lost easily and my brain seems to run out of power just like the rest of my body does. I had to use cue cards to keep myself on track and even then at times I still became confused when the reporter would ask questions. I liken my brain issues (some of them) to trying to watch a youtube video on dial-up. I know what I am trying to say and I start talking, but soon I reach the end of the buffered part of the video and it gets all choppy and stops. Or like someone is turning the sheet music too fast and I just draw a blank.

I knew there would be no way to convey the entire story of what these drugs can do to a human being – or what they’ve done to me. Very few of my issues/symptoms were covered in the interview, but I knew going into it that I’d only have 60 seconds or so to cover a tremendous amount of issues – that after 6.5 years I still don’t know how to summarize effectively. I’m grateful to have gotten as much out as I had, and I’m equally grateful that Kathy Walsh was so gentle and understanding. She took her time and didn’t rush me, her patience was and is deeply appreciated.

One of the questions she asked was “Do you think you’ve lost your ‘fight’?”… That’s where you see me choke up a little. A perfectly appropriate question I suppose, but it totally blind-sided me, I felt somewhat incensed by the implication that I’ve lost my “fight”. I’ve been through far too much torture, more than I’ll likely ever have words for. I will never lose my “fight”… I may lose the fight, but never my inner fight. My inner fight is the only thing I have control over anymore.  I’m a father now, my life no longer belongs to me. I fight for my son and I will never let him down.

I cannot thank Kathy Walsh and CBS enough for helping to get the word out and warn as many other as we can. It’s been my experience (echoed by many others) that most in positions of power do not want to discuss what a multi-billion dollar per year drug class actually does. It’s a minefield that few will step into. That includes Doctors, Politicians and I assumed media as well. Luckily the time has come for the truth to be told. Thank you Kathy and CBS for your efforts in warning the public about the serious dangers of this class of drugs.

My life has been hijacked by this drug. Coming up on 7 years later and I’m still battling intense progressive entire-body weakness, multi-system issues and an unimaginable amount of pain. I am a small fraction of the man I was before Levaquin.

Warning the public and educating prescribing/treating physicians is top priority. It is my hope that the exposure across the nation recently will save many lives. Thank you to all who have had the courage to come forward to tell their stories.

Your Brother in Fight,
Michael

Denver Levaquin Story

 

New site

We’ve moved the blog from Blogger to WordPress and we’re continuing to work on it. Organizing my thoughts or capturing them has been difficult at best. That’s why I wrote on scraps of paper, later used a recorder. But with help, I now have a place to write that makes sense to my brain a little bit.

When I have scattered thoughts I can easily organize them with tags and categories. This really helps me. Although I might not publish most of what I write, at least now I have a place to get the fragments out. If you’re reading this and your brain got whacked hard too, take note. With a private blog (just for me) I can start to get thoughts out and it organizes them for me. If I want to see what I wrote about my brain or heart over the years for example, I just click on the tag. It’s a big help to me so far. If you’re having similar cognitive issues, consider setting up a private blog that only you can see. Maybe you’ll find it easier to get thoughts out too.

I realize a lot of what I write – this included – will likely only make sense to those of you who suffer similar issues. The rest will think this sounds crazy. But we have to fight back in any way we can. It’s the only way.

Please, take the time to wander the site and bear with us as we update or tweak things a little. Just because it’s set up so I understand the organization doesn’t mean it’s readable to others – which is the whole point of the blog! So suggestions are always welcome.

I need to rest. I’ve been having a much harder time lately. I hope to post again soon.

Your Brother in Fight,

/M

“Lessons from Dad”, by Aedan: A book of what my son has learned through my journey.

Lessons from Dad – Cover

– A new series for those who feel how I feel –

We live in an unusually happy home. I don’t talk about this much, and I certainly don’t show it much either. I can’t hide my difficulties of course, but I see no point in continually complaining or pointing it out either. I’ve learned to live through shame, pain, fear and even terror with a genuine smile. I’ve learned to truly be grateful for each moment I am given on this ball of gasses and rock we call Earth. Our son isn’t exposed to the sadness or heaviness that one might expect to find given my/our situation. We live (almost) as if this doesn’t exist, we don’t give it the power. We don’t make an issue out of what’s happened to me, it just is – and we let it be. We live without drama and instead live with love and genuine joy as best we can. That’s what makes this even more special to me. I am not sad around him. He made this book not to cheer daddy up but instead out of pure love and joy. He worked hard on it too.

Lately I’ve been having a much harder time coping. Perhaps due in part to my reading years’ worth of my “scraps of paper” that I’ve written tortured and fragmented thoughts on. It’s not an easy thing to face, especially given that after 6 years the fight has only got harder. And lately I’ve been a bit sad when I’ve allowed myself to think of all the moments I’ve missed with my son. I started to feel as if I have lost my fight and that I have failed him. Sometimes I fear I don’t have much to give. I don’t let myself stay in that state long – nothing good can come of spending energy that way. But this is normal I imagine, and I suppose many of you may feel this from time to time. For those parents out there that feel how I feel at times, I start this series for you…

I’ve come to realize I still have so much shame over the things I cannot do. Especially over the mental challenges I now have, that makes me feel defective (if I let it). This is part of the everyday “fight” I speak of. And as a father, I want to give my son so much more. Any father out there can feel my pain here, right?

But I also realize that any energy I spend on emotions that do not serve me is wasted energy. And I literally cannot afford to waste energy. Not only that, but I cannot let my son see Daddy that way. It will teach him the wrong things. I’ve learned to pull myself out of negative states reasonably quickly, you must do the same. I am not here to tell you this doesn’t happen to me, or that somehow I’m super-strong. I’m human too you know. But I fight, and so must you.

I’ve told some of you before that your children will learn from your journey through osmosis. What you show them counts, more than we know. But words are one thing… When Aedan gave me this book I was overwhelmed and I couldn’t help but cry.

This is a book of what my son has learned by watching how his Daddy fights with his head up. Yes, there’s a lot of things I cannot do – even mentally. Yes, he sees me struggle with simple tasks and he sees me fall down a lot, and that really wears on me.

But this book proves the impact of seeing me get back up. Every time, every day.

Pg 1 and 2

I have thought about this post for a few days, and writing this has taken almost 3 hours. My brain can’t organize thoughts well, and trying to write (or speak) what I want to say is very similar to those lyrics or song title that are on the tip of your tongue driving you mad. It’s frustrating and getting through the electrical mist seems impossible to me most times. But take it from Page 1 of the book…

NEVER GIVE UP.

I’m here to share with you whatever I can in hopes you can take something away from my journey. My brain is slowing and I’m getting more confused, if I don’t post this now I might never. I pray I make sense.

Your Brother in Fight,

/M