May 2016 Update

Wow...it has been quite awhile since I last updated this blog. Since my last update, my doctor and I changed my bloodletting schedule to every three months. Since my diagnosis just under two years ago, I have significantly reduced my ferritin levels via the bloodletting treatments, moving from once a week, to once a month, to once bi-monthly, to once every three months. After my last couple of treatments, however, I found that my levels seemed to be reaching some sort of plateau and not reducing on the level they had previously. Thankfully, the levels were still in an acceptable range, albeit somewhat elevated. After some consultation with my doctor, we have decided to once again change up my treatment schedule and will be moving to once every two months. In my head, I feel that this will change again to once per month, but we will see. I do admit to having slacked off a bit here and there in my diet, although I still do not eat as much red meat as I once did. Its still more of a "special occasion" thing...or its a weekend and I want to grill...I know...bad. But I am only human...

To close out this post, I want to encourage everyone to talk to their doctor about hemochromotosis. It is literally the most common genetic disorder in America...as well as seemingly the most misunderstood. Some doctors do not want to even bother testing individuals for it. The symptoms are, ironically enough, very similar to those of iron deficiency. Fatigue and joint pain are the most common. When I say fatigue, I am not talking about feeling like you didn't get enough sleep and maybe could use a nap. I am talking about being unable to move, every muscle in protest, every joint stiff and on fire with pain. Other symptoms can include heart arrhythmia, abdominal pain, weakness, apathy, lethargy, and arthritic pain. If you have seen a doctor for any combination of these and he/she still cannot provide you with a definitive diagnosis of anything that could possibly be causing them...get tested. HH does not typically show consistent symptoms in men until they reach the 30 to 50 age range, but for women it is much later...which can mean it is already almost too late. Not too late for treatment, mind you, but damage to your heart, liver, pancreas and other organs might already be well under way. 

So, get tested if you haven't already (its a genetic test, not simply an iron or ferritin level test) if for no other reason than to cross it off the list.

Hemochromatosis - Definition & Pathology

Fairly informative breakdown of what Hemochromatosis is...

Hemochromatosis - Definition & Pathology

Updated update

...and my ferritin level for June 2015 is...

*Drum roll*

59ng/mL. Here is a graph chart to give you an indication of how bloodlettings, diet changes, exercise, and general moderation has affected my levels (charting from February of this year to June):

Not bad, huh?

And this is where I get on my soapbox. Hemochromotosis is perhaps one of the most misunderstood and least publicized genetic disorder. It affects 1 to 6 out of every 100 people. It is known to be a genetic issue, but can also be acquired through lifestyle choices. Instead of listing a FAQ section here I am including the following link for everyone to review: http://www.americanhs.org/faq.htm. One thing I am a huge advocate of is genetic testing. Everyone should have this done, but many doctors hesitate or dismiss it as being unnecessary. Thankfully, my GP took the extra step to do research into the variety of symptoms I detailed for her (i.e., extreme fatigue, joint pain, etc.). The step-by-step process led to genetic testing, which confirmed everything. Of all genetic conditions, hemochromotosis is the most manageable...if it is diagnosed  early enough. Review your health, compare symptoms with the list provided in the link I have included, talk to your doctor. It is simply stupid not to given how manageable this condition is.

How Low Can you Go?

Its been a little while since I last posted; time just seems to get away from me that much easier anymore. The news about my condition is...there is no news. Which is actually GREAT news! Why,you might ask? Because the bloodlettings I had been doing, first on a weekly basis, then bi-weekly, then monthly, have done their job. Almost too well, actually.

My ferritin levels in April hit a record low of 27ng/mL. To give you some perspective about how important that is: I started treatment after diagnosis with ferritin levels at 1295ng/mL; normal range is 22ng/mL to 365ng/mL. As a result, my doctor cancelled my next scheduled bloodletting as she did not want my levels to get TOO low. Pretty cool...no pokey pokey for April.

Before I could do another bloodletting, I was asked to do labs again in May. This time, my ferritin levels came back at 34ng/mL. Climbing, but still quite low...too low to allow another bloodletting. And I even had several instances of "cheating", i.e., eating some red meat here and there at various occasions. So...I was off the hook for May as well.

Today, I did more labs to see if I am at a level that calls for a draining. Might not find out until later this evening, but I am pretty confident that the number that comes back will still be low.

I have seen countless posts from others with my condition, others who scoff at diet changes, scoff at exercise/lifestyle changes, relying primarily on their scheduled bloodlettings. I have actually quit those groups with those people because I believe my personal turnaround can be directly attributable to embracing the need to change how I eat, how I live my life, not simply hoping treatments do the trick. Everything in moderation and understand the party can't go on...at least not at the same reckless intensity it has before...

27

Well, apparently, bloodletting as a treatment for hemachrom works pretty damn well as I am now down to 27ng/mL ferritin as of this past week. In just about 5 months of phlebotomies, moving from weekly to bi-weekly only recently, it has dropped my ferritin levels by 1268ng/mL.

Going to Vegas this weekend for my younger brother's wedding. I think I will have a big ol' bloody steak and a beer...

Thats just low...

Hit a "low" milestone recently. By low, I mean my ferritin levels. As of last Friday, March 27th, my ferritin levels were down to 95ng/mL. Quite a drop from my diagnosed levels of 1295ng/mL. What did I do to celebrate? Had a big ol' lamb shank and a taste of lamb stew at the Basque restaurant we went to in Reno while celebrating my brother's bachelor party. I know, I know...but it was a special occasion. Bloodletting schedule has been reduced from weekly to bi-weekly, which is very nice. Still get some flare-ups of fatigue every now and then, some joint pain, but not on the same level as before I started my treatments.

Today I came across this link to a video titled "Haemochromatosis Explained". Its actually pretty informative. Shot in Australia, the thing I love most about it is their sections of background music during the scene transitions. I was a little annoyed as some of the suggestions they make with respect to diet and donating blood run counter to what each of my doctor have stated, but I think there are always going to be disagreements and unclear aspects when dealing with this condition.

March Update

I did not realize it had been a full month since I last wrote an entry here. It is always in the back of my mind, but I can get so easily distracted anymore that it slips right by.

 

Progress thus far? Not too bad, actually. I review other's experiences every day and it serves to re-enforce my opinion that the middle road is the best route. It is so easy to take one approach and become militant about it, to dig one's heels in and determine that your way is the only way. I do not have that attitude at all. There are certain things that are obvious, but not everything applies to everyone in the same fashion. All I know is how it affects me. That said, doing my best to monitor the things I eat and drink in conjunction with my bloodletting treatments, I have been able to drop my ferritin levels from 1295ng/mL to my current 204ng/mL, a drop of nearly 1100ng/mL in just three months. Additionally, I can now stop doing my treatments every week; every other week is now the order. My goal, per my hematologist, is 50ng/mL, which seems rather extreme when compared to the average range as indicated to me via my lab results page (22ng/mL - 365ng/mL). One must remember, however, that my condition "loads" iron to my system at a much faster rate and heavier volume than others; I can only assume that bring me down to near-anemic levels will serve to provide something of some leeway for my system when I do "slip".

 

"Slipping" is a constant nag. I have slipped a few times now. What I mean by that is that I have consumed beef on some level. Beef is truly the enemy. Ah, but such a beautiful and delicious enemy. I watch food shows and can literally start drooling a little as I see magnificent cuts of beef being prepared. Where I used to order a rib eye without blinking an eye, now I have to take more time to scan a menu, find something that sounds as appetizing. Can I slip every now and then? I refer back to the middle road opinion I stated previously. I have to live my life; I want to enjoy my life. Denial is not necessarily enjoying life. And therein lies the rub. If I want a longer life, I need to avoid certain things. But is a longer life really enjoyable when one must constantly deny oneself some of the small pleasures in this life? I have few vices now, having explored my taste for such things - both illicit and otherwise - in my youth. Food is sort of my last refuge, y'know? A fine meal, a great bottle (or two...) of wine, the company of my wife and friends...these are the things I consider my major "vices" now. But they must be tempered...and that chafes against my inherently rebellious nature. One would think being 48, a father of four, a grandfather to one, that I might be a little less...difficult. Nope. I don't like being told what to do and what not to do, especially when it comes to my favorite foods. But it must be done...at least to some degree.

 

So, the middle road it is. I can tell you this, however, as Spring is waking up and Summer is stirring...I'm gonna grill me up a fucking big-ass rib eye steak at some point in the next few months. You can count on that.