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CHfather

Messages to Michael

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I sure hope you catching a break, Michael.

Your perseverance proves to be an encouragement and inspiration to all of us.  It may seem silly, but it really has.  Reading your story and reflecting on your ability to push through pain has given me needed strength to push through my own CH desperation.  I admire your dad for the unwavering support he gives not just to you, but to all of us.  Thank you both. 

I really hope you and your Dad make it to Chicago.  Please, I beg you, please, do not let your father attend alone.  We need you there to keep him and Dan in line.   ;)

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As one nut job to another.....uh....what do you look like Matt? I don't want to miss you in Chicago. Do yu know what you'll be weAring? 

You're hitting on Matt now?

Ha - I just saw this now. Kaboom you may have to step in and defend my honor here LOL.

And if I can make it to the cornvention, yep I will actually find a photo o' meself to post here beforehand (brace yerselves!  :D) so folks'll recognize me in person.  8-)

Would that be the cooooolest if both Ron'n Michael could both get to Chicago or what?

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Been thinking about you a lot Michael. I'm hoping you're catching a break right now too.

I think everyone wants to see Michael at the conference. Unless a money fairy pops up and shits a HUGE pile of money into my hands, I won't be able to go, but I want him to.

Mainly so someone can give him a great big hug for me. Michael, you're awesome.

Mystina

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Kaboom you may have to step in and defend my honor here LOL.

I've got your back, Jeebs.   ;D   If absolutely necessary, I will use one of your CH awards as a weapon to fight them off...and let Dan borrow my lip gloss.  Run Jeebs, run!

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Hey there everyone, this is Mike. My father is Ron aka Bonkers. He has been on this site for the past year or so in an attempt to help me gain some relief from my chronic CH. I have written and even spoken to a few of u on the phone. First off I just want to say thank u from the bottom of my heart to everyone that has written to me. Ur kind words and encouragement has done more for me than u will ever know. Before finding this website I was always down and never felt like I was ever going to see an end to this horrible place I had found myself in. I wish I could take all the CH that everyone here has and make it my own so no one would have to suffer in the ways I know all of u do as I do. But at the same time I am thankful that I don't have to be alone in this. Just knowing that there is even one other person in this world, let alone all of you, who has experienced this and is pulling for me, gives me more strength than I thought was ever possible. EVery night I talk to my mother on the hone to say good night. She always asks me how I am doing and my answer typically is always not good or even horrible. As any loving mother would she tells me she is sorry and she wishes there is something she could do and me being the loving son replies with "I know and u don't need to be sorry, I love you." One thing that has come to me through all this is that if by me having to live with CH keeps even one other person from having to and in the process maybe help even one other who does have to, then I would live this exact life a hundred times over. Everyone of us has some burden in our lives that we have to deal with and I've come to accept that this is my burden and I know that when I make it through this I will be better and stronger for it. Not just because of the pain I have had to fight through but also because of all the wonderful, big hearted people who have been there for me. I hope that in the time ahead I am able to be there for all of you and maybe even help just a fraction of what you all have done for me. Who knows, maybe through all this we can find a way so that no one has to ever endure CH again or at least not feel alone or helpless because of them. I love you all and to those we've lost, we continue to endure in your memory. 

Mike

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Michael, thanks so much for posting this, and for allowing us to see for ourselves that you are exactly the kind of young man your father has described you as being.  Believe me, your perseverance and your grace have already powerfully affected a lot of lives, including mine and my daughter's.  It's an awful, awful thing that so much of your young life has been robbed from you by CH, but between you and your father, and with advances in understanding and treatment of CH, that's just not going to go on too much longer--and you'll soon be making up for lost time with a joy and awareness and gusto that will leave your peers in the dust. It's gonna happen. Nobody will be more deserving of a great, happy, fulfilling life than you, and nobody will be happier to see it than all of us who think about you every day.

Jerry

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What they said Michael!  :)

You've got people quitting all kinda bad stuff.

The snowballing is picking up steam! Wait a minute if a snowball picked up steam it would start melting - that was a bad expression to use there.  :D

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CHFather, this is Mike, I just wanted to say a personal thanx for starting the "messages to Michael" board. Having my father read what others had written to me really helped me through some dark, difficult times. When I got to points where I was at my wits end these words of encouragement helped more than any drug or treatment ever could. From the bottom of my heart "Thank you so very much." also to all that even kept me in their thoughts every bit has helped no matter how small. If we all can continue to do so for all who need it as well, I feel we can make some amazing progress ourselves, in an area the medical field has not had much luck in. GO TEAM!!! sorry everyone, I know that was a little corny... but hey "GO US!!"

Mike

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That is just so freeking awesome.

I'm getting a very hopeful feeling that you're going to make it out of this bind, and will be doing better than ever, Mike.

And yep CHFather and Mike's dad Ron just plain RAWK.  :)

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Michael, thank you for this very thoughtful note.  Like you say, it's all a team here, all US.  In this case, all I had to do was snap the ball and run to the sidelines while everyone else did some blocking and you carried the ball.  Every single person here is a Hall-of-Famer in my book.

Heck, that reminds me of something I read once, which I'll paste in here just because I feel like it.

>>>>Earl Campbell was an astonishingly good football player, very strong and very fast. He won the Heisman Trophy, awarded to the nationÂ’s best college football player. There is a nine-foot-high statue of him outside the University of Texas football stadium. ESPN has rated him as the twelfth-best college football player of all time.

In his first year of professional football, he won honors as both Rookie of the Year and as Most Valuable Player. He went on to lead the league in rushing yardage the next three years and garner many awards. After his career ended, he was voted into the Hall of Fame.

    Campbell played most of his NFL career for the Houston Oilers, where his head coach was Andrew “Bum” Phillips, who was known for his folksy communication style. Phillips once remarked, “Earl Campbell may not be in a class by himself, but whatever class heÂ’s in, it wouldnÂ’t take long to call the roll.”

    One year the OilersÂ’ trainer instituted a practice very common throughout sports at all levels: he required all players to run a mile within a designated time. Campbell, whose thighs were thirty-five inches around and who carried about 240 pounds on a five-foot-ten-inch frame, was not built for distance running. Although he was determined, he never could complete the run on time.

    Reporters came to Phillips demanding to know what he was going to do about his star player who could not fulfill one of the teamÂ’s requirements. “Well, if itÂ’s fourth down and a mile to go,” Phillips answered them, “I guess weÂ’ll have to give the ball to someone else.”<<<<<

If it was fourth and a mile, I'd give the ball to you.

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Well said CHF. I love the analogy.

Great to hear from you Mike. You have helped me get thru my situation which is peanuts compared to what you have gone thru. I truly hope things improve for you soon. I know they will.

Eager to hear from you again....to give us more PF news!!!

Scott

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As usual I'm a day late...well several days late. Let me know when I can come up to Alpine and drop a few with you guys at McIlhenys. I couldn't be prouder of you Michael. We're pulling for you.

Joe

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just thinking about you today Mike.

That was my dads name, and it is my favorite siblings name...I have never met a Mike that wasn't a sweetheart.

I think about you every single day and have since I found this site in January and read your story. I thought, "that could be my child". It is one of the reasons I stay. To learn as much as I can so if that day ever comes, I will have as much knowledge as possible to be an advocate like your father is. I hope to be a part of the solution, I believe in a day when we understand CH and we no longer have to suffer! Go Team!! Stay strong Mike! Big hugs...

-Dereksgirl

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I've been off the radar for a while, and missed your entire story!  Please know that even if I am not around, I think about you and pray for you just like my own son.  I pray every day that you guys get some relief.

I am happy that you are making progress with your detox. 

Just getting through the day with CH is bad enough, detoxing on top of that compounds times 10!  I sat with my own son while he had to detox off abortive/pain meds (not as strong as methadone) three different times.  After that, you cannot beg that boy to take ANY type of pain pill.  He just had surgery with absolutely no pain meds, the doctors were stunned, but he held his ground.  The pain that results from that crap just isn't worth it.

Once it is gone, you will be free from it, and I hope and pray that it's absence will allow the alts to do their job once and for all!

Hang in there, we all love you!

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Hi Mom,

Backattcha. We feel the same about you and Andrew. No need to worry much about Michael. He's taking the detox as slow as he needs to to be comfortable (sorta). He upped his Warfarin intake to 6.0mg/day today. We have a lot of confidence in this stuff. He's still busting every couple of weeks though not as effectively as he used to (1 tab of LSD night b4 last). Licorice helps. He'll be okay. Always good to hear from you.

Love,

Ron

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Ron,

I assume that they are testing his INR regularly?  (That is the blood test that shows how thin his blood is, which is so important because everyone's blood reacts differently to warfarin.)

I'm just being nosy, but what was his last INR?

Of course, I am considering trying this on Andrew.  (In my own job, I monitor patients on warfarin.)

Thanks :)

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Hi christy, :)

Wow! You're an expert. AND... you're my friend. Cool. His last INR was 1.1. That was when he was taking 4.0 mg/day of the Warfarin. Yesterday, his doctor raised his intake to 8.0 mg/day. In the study, participants warfarin levels were raised much quicker than is practical for us since Michael can't get blood tests every day. Do you have any idea how much he'll be taking by the time his INR reaches 1.5?

Ron

p.s. - Do you see any danger here? How high can they raise his INR and still be safe?

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You flatter me!   [smiley=embarassed.gif]

Assuming that he had taken 4.0 mg per day for at least four days and his INR was at 1.1, I would assume that after another four days at double the dose, it will probably be at about 2.0 - 2.4.  The goal range in the study was 1.5 - 1.9, so he'd certainly be in the ballpark.  Any dose change with warfarin will take about 4 days to exhibit in the INR.

If he doesn't have any risk factors for bleeding (ulcers, etc.), he should be able to go up to around 3.0 with no problem.

As time passes, they will begin to notice trends in how his INR responds to the warfarin, and dose him accordingly.  Don't be surprised if they end up around 6 or 7 mg/day.

A couple of things to note (not sure how much they told ya), but there are things that he should avoid ingesting while on warfarin.

Alcohol (beer, wine, liquor as well as cough medicine, nyquil and the like) will enhance the effects of the coumadin.  Also antibiotics, steroids, acetaminophen, and ibuprofen can cause his blood to be too thin.  The risks there being inernal bleeding, etc.  Be mindful of frequent nosebleeds, blood in his urine, or dark stools.  I use the drig interaction checker at www.drugdigest.com.  Any time he gets a new medication Rx or OTC, I recommend checking for interactions, if one is reported, you should discuss with your doctor.  If it is a short term med, they may just lower the warfarin for a few days.

Any source of vitamin K, will inhibit the effects of the coumadin, and cause his INR to drop, the blood to thicken.  The only risk there would be loss of any attained results, headache-wise.  (I have attached a list of the most common foods that contain vitamin K, and the relative levels in them.)  Foods containing lower levels of vitamin K should be ok as long as they are eaten in moderation. 

What I tell my patients is you don't have to eliminate all of these things, just use moderation and be consistent.  If you eat salad every day for a week one week, then none the next, it is very hard to keep up with you.  Better to have a salad, once a week - every week.

I think that's about it.  I am happy to have something to contribute.

Food_List_Containing_Vitamin_K.doc

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