Twenty one.

Well, here I am back in Bend, Oregon after a nice weekend of not being in las vegas at a convention. The whole trip to Vegas was sort of a blur, basically worked the whole time and slept the other time. We did get done at about 4:00 on Thursday, and had a nice dinner at the NY NY hotel. I was surprised at the will of some of my co-workers to 'hit the strip and gamble' after 2.5 long days of convention work with very little sleep. But then after thinking about it, most of them have children, and when they are away from home they have to take advantage. I was perfectly content with going up to the hotel room to sleep. But I did manage to hit a few slot machines.

I put 5 bucks in a nickel slot, pulled the lever, and BAM 48 bucks. Cash out, after one spin. Then I went over to the deal or no deal slots and within about a minute i was up 8 bucks. So, I wasted the rest of the 8 bucks and change, and stormed out of there with almost 45 dollars more than I came in with! Hot damn. If everyone could say that when they left vegas it wouldn't be vegas! I had some temptations to play some 21 (three card poker), but the minimum was $10 per hand, and I figured if I played 4 hands, and lost all four, I'd be down, or where I started, and depressed that I just lost all that money. Even though it wasn't that much... One of the wives of my co-workers won a Grand. sweet.

Latest news on the iron overload front is I'm officially 100% de ironed, with no phlebotomies in sight. I stopped going in for weekly phlebs at the end of February, when my ferritin was 30. A month after that (at the beginning of April), my ferritin went up 5 points, so I had another phleb. Today my Ferritin tested out at TWENTY ONE. That was the best news I could have hoped for. Now it's time for some steak!!!!!

Parting shots from Las Vegas:

Convention before:


Convention during:


The strip, as seen from the walkway between MGM and NYNY:


Statue of Liberty, NY NY hotel:


We actually did make it down here on the last day (view from Bellagio entrance):


I was still smiling after the chaos.


With this post a new format is also being rolled out, to accommodate larger photos. Thanks Blogger, for making this easy.

de-ironed

April 2006 Ferritin: 1090
35 pints of blood later...
March 6, 2007 Ferritin: 30

What that means is I don't have to give blood every week anymore! Yay!

Update.

Tomorrow I will have another pint of blood removed making it an even 35 units (pints) since June 5, 2006. That's 4 3/8 gallons. That's getting close to a full 5 gallon bucket full of blood, taken out of me. On Feb 6th, my ferritin was only 82, down from 1080 last spring. A ferritin of 82 is well within the normal range, but it's not quite considered 'de-ironed' by the doctor until it gets to 30. I really hope to be at 30 or below after tomorrow's appointment, and I will know for sure next week. Fingers (and toes) crossed.

Also, you might have noticed (if you read my blog), that I changed the name at the top. I don't know why it was what it was, but I think .:madNESS is a much better choice.

Here's my planned nordic ski racing schedule for March:
March 3: Par for the course II 10km individual freestyle
March 22: Nat'l Masters 15km skiathlon
March 24: Nat'l Masters 15km classic
March 25: Nat'l Masters 30km freestyle
March 31: John Craig race (classic)

Downtown Bend, winterfest sprints.

Bleeding continues...

I'm still going into the red cross to donate blood. My ferritin as of last Friday was 130, which is over 100 points lower than it was before thanksgiving, but not low enough for de-ironing to be complete. That likely won't happen until February, as we're going on a 2 week vacation to Chile in the latter part of January. So I'll miss 2 weeks there. I am taking B12 and folic acid suppliemtns to help the red blood cell re-generation.

Until Next time...

Ironman Update.

My de-ironing progress continues. I started out with a ferritin level of 1090, in June, and now, over 5 months and 23 phlebotomies later, I'm at a miniscule 231!!! Yea twenty freaking three pints in 24 weeks - one short of 3 gallons. But don't worry, I'll be hitting 3 gallons tomorrow (that's alot when you look at a one gallon jug of apple juice). A ferritin level of 231 puts me within the -normal- range for a non-iron overloaded person (normal range for ferritin level is somewhere around 30-300). WOO HOO!

This was nothing short of great news, but I'm not done yet. The doc said the goal will be to get the ferritin between 10 and 30. I'm still under going weekly phlebotomies, for a few more weeks, so it will be important to make sure I don't actually run out of iron, which would lead to anemia.

On the fitness front, I ran in yet another 5k run last weekend (the COCC turkey trot) and I made it to the finish in under 19 minutes. I was proud of my friend Sean, and my friend Erika, who were the overall winners of the race. That wraps it up for running races in 2006. In fact, probably racing period. I'm planning some big events for 2007, many of which include pedaling a bike.

Here is a teaser for my next post: [11/23 update: you'll have to wait a few more days :) ]



bye.

still ironman

I got my lab results yesterday. I was a bit off with my prediction, but I think I'm on track. I wanted to see that I was over 1/2 way done, but the ferritin number came back at 745. That means I'm losing about 34 points per bleed. If that rate holds for all bleeds, I can expect to be done by about January. yippie. 4 more months of weeklies. Oh well, the red cross is happy.

That's all for now.

Iron

Any guesses on how many points my ferritin will drop after 10 blood donations in 11 weeks? In case you haven't studied up on how many pints of blood is in a person about my height and weight, well, it's just about 10 pints. I've recycled my whole blood supply since June 5th. Tomorrow is the first follow-up to see how much iron I've unloaded. I started out on June 5th at about 1090. Guess? Let's say 412. That would mean I'm over 1/2 way done. If it's under 412, I'll be encouraged. (it has to be, right?) I'm tired, mentally, physically (and not from doing things like this), and I'm sick of donating blood.

I'll probably know the result in the next day or 2.

Some netflix notes: from this weekend: Match Point. It was OK. 3/5 stars. The ending bumped up my rating from 2 to 3 stars. Hopefully this doesn't give it away: you'll really like 'the talented mr. ripley' if you like this one.

Last week: Cinderella Man: 5 stars. This was a great movie if you like sports or not. Back in the day, boxing was cool, and this is one of those movies that it's hard to rent for whatever reason, but it's defiantly worth it.

At the theater, we're hitting up Talladega Nights tonight in sisters.

Jazzy says hello:



Here's to low ferritin levels and some dust curing rainy days soon.

Hemochromatosis. What is it?

When I first found out that I had hereditary hemochromatosis (or HHC or Iron overload), I was a little shocked. As an athlete, I'm in some of the best shape I've ever been in, and I can say health wise I've really never felt better. I have no symptoms of HHC, whatsoever. Then to find out that my ferritin level was way high (ferritin: the level of iron my body has stored for future use) was a little surprising. It's a genetic disease (or disorder really) that causes your body to metabolize too much iron. I guess on the bright side, it's OK because as an endurance athlete, I'll probably never have an iron deficiency.

I will start treatment on June 5, 2006, by donating at least one unit of blood (phlebotomy) per week, until my ferritin reaches a more normal level. Right now it's at about 1090, and the goal will be to get that between 25 and 75, so there's a long way to go, and a lot of needles sucking blood out of my veins. Now from what I've learned, I don't think the iron is so much in my blood, but the loss of blood will prompt my body to build more red blood cells and the body needs iron to do that. So it is logical that after a series of weekly blood donations, my body will eventually use up my extra iron. After the initial aggressive once per week treatment, the maintenance plan is a bit more manageable 2-6 phlebotomies per year.

I plan to keep training (cycling, running, maybe swimming, etc) through the treatment, depending on how I feel, so if you're interested in how that goes (or if you're in a similar situation, and stumbled across this site), check the blog this summer, I plan to document the treatment (and training) progress. It will be interesting to monitor my hematocrit (HCT) and hemoglobin (HGB) values throughout the process. As a reference point my early April HCT was 43. I'm thinking this might rise in the early phase of the inital treatment, but we'll see.

If all goes well, I'm hoping to have this once per week thing wrapped up by next fall (or winter?). Only time will tell.

That's all for now, have yourself a fine day!

hee-moe-chro-ma-toe-sis

You know, that picture of Chris Horner on the previous post is so awesome I'm putting it in this post too.


So, basically the treatment plan will be weekly phlebotomies starting June 5th. I don't like the sound of that word, so I'm going with blood dropping (since it is basically just like blood doping except the pints will not be added back into my body). I talked with the doc, and he basically agreed that because I'm young, my liver tests out fine, I have no symptoms of related to hemochomatosis, that it would be OK to delay the treatments one month. I'm not really looking forward to sitting in the 'infusion center' in the oncology section of the Bend Memorial Clinic, and dropping a pint of blood per week until further notice. It could take up to 30, 40 even 50 weeks. If my math is right that could be a year. Might as well git er done, because when I start this, I'm not stopping. After the initial treatment of 1 drop per week, we'll be on a more manageable maintenance schedule that will include only about 2-6 blood donations per year.

It's actually possible that my HGB (hemoglobin) and HCT (hematocrit) will actually rise after the first few or several drops. Because of the iron stored in my body I will be able to replace the lost RBCs (red blood cells) faster than the average person. We'll see, I plan to keep a close eye on my numbers.

As for this weekend, there are no competitions, only training. I might just have to get out kayaking, because the PPP is not far off. I've got a 10k run next weekend, and I've added the Cascade chainbreaker to the program the week after that. Then it's the PPP, with an open memorial day weekend, and then the penultimate cat 4 stage race (the Mount Hood Cycling Classic) on June 2-4. After that It's kind of an open book; I'll most certainly be out there training, I'm not yet sure about competition. I'll be at the Big Horn trail run (near Sheridan, WY) running in the 30k, we might take it easy and run with the wife. No matter what it will be a fun road trip and weekend. A few friends of ours are also running events there. The weekend includes a 30k, 50k, 50 mile and 100 mile trail runs. 1 friend is running the 100 (also happens to be the defending champion in the 100 mile race), two are running the 50 miler. Laurie and I are doing the 30k.

I also want to congratulate my mother-in-law Barb, for her one year sobriety anniversary yesterday! Huge props to you Barb.

Iron-man.

You knew I was an ironman, but it turns out I might be iron overloaded. It's called hemochromatosis (AKA Iron overload disease or 'genetic iron poisoning'). It's genetic. What it means is that your body doesn't metablolize iron like it should. I was debating on wether or not to put this on my blog, but I decided what the heck, the only people that read it are friends and family that have been sent the URL by me (I think only like 4 people read it and that includes my mom).

The fact is, I actually don't even have -any- iron overload symptoms (fatigue, joint pain, arthritis). How did we find out about this you say? Well, my brother was tested a few weeks ago and it came up positive for him. He was in the doctor for a respiratory sickness (like the flu) and the doc heard a heart murmur or something, and did more tests, and by chance, found high iron levels in his blood (BTW his heart is fine). The disease is hereditary, so he promptly informed me, and then both myself and my dad were tested. I just found out the results of my blood test yesterday, and what do you know, I have full blown hemochromatosis. (So does my dad!) Now, I'm messing up the medical terms, but the iron level in my blood is something like 1080 (where a normal level is like 50-460 or so) I'm going to the hemotologist next week, and I'm going to read my ass off about this thing and I'll be able to post better info then.

It kind of makes a little sense too, because my dads parents were young (well younger anyway) when they passed away (70s) and my moms parents lived into their mid 90s. Also, my dads the oldest one of his cousins that's still alive. People die young on the 'Ness' side of the family. I wonder why? Well, (speculation) it's this iron thing!! Iron overload. Hemochromatosis. I'm still learning how to pronounce it.

Sound serious? Well it sorta is, and it can really mess you up if you don't know you have it. The thing with my brother and I is we discovered it now, before we have experienced symptoms and this thing has wrecked our liver or any other organs. Hemochromatosis is actually one of the FEW genetic diseases that has a prevention plan so organ damage and premature death can be avoided. WOO HOO! And I don't even have to take drugs! From what I'm learning (have not yet seen the hemotologist) is that the treatment is to give blood every so often (like every week or even twice a week) to get the iron level lowered, and then 2-6 times per year after that. That kind of sucks, the last time I attempted to give blood I almost passed out, and I don't think they even got a full pint out of me. Giving that much blood might hinder my bike racing plan... I think I might need to wait until June (after Mt Hood) to do the treatment. I don't think that giving four pints of blood would be a good idea going into a difficult 3 day stage race that ends with a 75 mile road race with 3 major climbs.

This is something that a lot of people have (millions in America) but, most of the people that have it don't know it, and have not even heard of it. Because of the way it mimics other health problems, people are often mis-diagnosed. So if you think you might be at risk, go get your ass tested, it's a simple blood test. At first when the doc said I was positive, I was like oh crap, this sucks. But the fact that I found this out now, before it got bad, probably added 10 or 20 years or more to my life span. Who knows, maybe, once I get my iron levels under control, I might be faster.

More infomation on hemocromatosis here and here.

While your at it check this out for a laugh.

[5/21/2006 edit: turns out only my Brother and I have the disease, and not my dad! Good news for him!]