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.

 

Just a little venting to end the day with

One of the most frustrating aspects of this disease is the fact that few people have ever heard of it and, consequently, do not understand the symptoms and how they affect those afflicted. No, its not an excuse, it is simply the way it is. There are times even now, as I go through treatment to manage it, that I feel fatigue. I do not mean I feel tired. I mean I feel fatigued, full body, fucked-up-beyond-all-recognition fatigue. Combine this with pain in almost every single joint, especially my knees, wrists, and feet and we have the ingredients for a real party.

 

I hate it because it affects how I react to everyone, especially my kids. Kids can be, we all know, rather challenging at times. This goes double for those in the 4 to 6-year old range, which is what we have. My patience level is literally in the negative numbers when I am having symptoms. If my wife even looks at me cross-eyed, it could result in something so viciously evil coming out of my mouth as to crucify a normal person where they stand. I do not tolerate fools on a good day, but combine that with an attack (which is really only the best way to describe it), and I just might send your forsaken soul to the lowest depths of Hell with a mere look.

 

Believe me...I do not enjoy this. It just happens. And attacks are different for everyone with hemochro (which I am calling it as it sounds cooler than it actually is...). This week was rough for me. Although I did have some enjoyment this past Saturday evening and, of course, on Super Bowl Sunday, Monday was like a train slamming into me. I can't do much else but try to apologize, but kids don't get it. They just know you were an asshole. Hopefully, my wife knows this is not really me; its the hemochro talking. Bloodletting treatments have been helping, but I am also frustrated because it seems like I am reaching some sort of plateau with little progress being made. I have had to accept that until my ferritin levels are down to the goal of 50ng/mL, I simply cannot have any beef. None. Nada. This has been a hard pill to swallow as I have been a lifelong, committed carnivore, mocking those who eschew all things red meat. Ah, how The Universe and The Fates enjoy their little ironies, don't they?

 

When the RN handling today's bloodletting asked me if I wanted to let my blood continue flowing or if I thought I had given enough, I said, "No, let's fill that bag to bursting.". Each week is like a test for me, to see how much I can bring my levels down. The last couple of weeks have not shown much progress. It is literally like one step forward/two steps back. And it is incredibly frustrating.

 

I know, I am whining and there are so many others with so much more going on. I have a dear friend dealing with having had at least one, perhaps multiple, small strokes...and she is slightly younger than myself. I have seen friends from school who post about rheumatoid arthritis, fibromyalgia, and a multitude of other ailments and injuries. I am not asking for anyone's pity or to try and say I am any more important than they. I am reminded of how lucky I am and how I should not complain each and every week when I sit next to and talk to those undergoing various levels of chemotherapy. I know cancer survivors and have known those who have fought and lost. I do not consider myself equal to them in what I am going through.

 

But sometimes, one has to vent. So thanks for listening.

...with no one to blame but myself...

This past week, I turned 48. I can recall being about 13, contemplating how old I would be in 2000 and thinking, "Damn...that's old...". Now I think, "Damn, 33 is like a baby...". I have always loved my birthdays. I celebrate each one with gusto, dictating what people should get me if they choose to get me presents and making certain everything is all about me. Why should I compromise on that? It was in that spirit that I decided, "I am going to have a great, big, bloody steak for dinner when we go out to celebrate." And that is exactly what I flippin' did, telling our server that I wanted it, "...as rare as you can legally get it." And you know what? It was everything I had hoped it would be...

 

The week of my birthday was sprinkled with little dietary rebellions of this nature. Some chicken livers and heart while making a whole chicken for dinner on Tuesday, a beer (yes, only one) with sushi lunch on Thursday, Taco Bell for lunch on Friday, a wonderful steak dinner with family on Saturday. I justified it all with the thought, "I just had a phlebotomy treatment ahead of all of these minor transgressions and hey, it's my birthday, dammit...". Plus, I had just logged my most significant drop in ferritin levels the week previous. Everything should be ok, right? I might see some variation, but it shouldn't be that much of a change, right?

 

Ah. Well...the gods laugh when a mortal thinks they have control over anything, don't they?

 

Those singular incidents, those minor transgressions served to pump my ferritin levels so much that the numbers effectively wiped out the drops from the past two treatments. Yep. The past two treatments.

 

Observe:

12/26/14 - 1016ng/mL

01/02/15 - 795ng/mL

01/15/15 - 1097ng/mL

 

This has been telling. I was curious how quickly my body loads iron. All I have seen up to this point were the drops and felt great about my dietary approach in combination with the treatments, that everything was progressing the way it should be. But there it is; the numbers do not lie. And I can't blame anything other than myself for it.

 

Do I feel guilty? Honestly, not really. I had known that enjoying my birthday on the level I wanted to would affect my numbers. I was prepared for that. So this is really not a shock on any level. But it also gives me an idea of how quickly and by what degree my body loads iron.

 

Now I just have to wait for that note from my doctor asking what the hell happened...

Bedside manners...

Going on record to say that I much prefer a woman handling my treatments than a guy. It isn't so much that I am sexist...it just seems that female RNs seem to lean toward having a better ability to make everything more comfortable.

 

Lets take my last two treatments as examples. The RN who has handled my treatments the last couple of times knows that she needs a smaller gauge needle for my veins, that my veins are not at all fond of being poked and require some inducement via wrapping my arm in a heating blanket in order to come to the surface, and her technique used inserting the needle and setting up the accoutrements is gentle and efficient.

 

By contrast, the male RN I had this last treatment sort of gave me crap for always using the same arm (its the best vein, dude), literally jabbed the needle into my arm, and then passive/aggressively complained that should I be assigned someone else my next visit, to make certain they make multiple appointments in the future as they tend to forget and I might not get the time I want (have not actually had a problem with that yet, but ok...).

 

My reactions at the time? What do YOU think? The guy was sticking me with a needle and taking my blood. Would you give him any shit? Exactly.

Ferritin Fun

As mentioned previously, the standard treatment for hemochromatosis is phlebotomy, i.e., bloodletting. To give you a better idea as to how effective it can be, I would like to share the progression of degrees by which my ferritin levels have decreased. As a reminder, ferritin is used as a marker for iron overload disorders. The normal/standard range is between 22ng/mL and 365ng/mL. At the beginning of this little adventure, you may recall that my levels were at 1295ng/mL; extremely high, to say the least. Here are all of my levels to date:

 

10/16/14 - 1295ng/mL

12/04/14 - 1233ng/mL

12/17/14 - 1124ng/mL (after 1st treatment)

12/26/14 - 1016ng/mL (after 2nd treatment)

01/02/15 - 795ng/mL (after 3rd treatment)

 

After only three treatments to date, my ferritin levels have dropped 500ng/mL, with the highest drop occurring after the most recent appointment (221ng/mL!). Not too bad. Not too bad at all. At this rate I think it is conceivable to only have perhaps seven or eight more weekly treatments before achieving the goal of 50ng/mL. Then, I assume, we examine how quickly my body "loads" and adjust the actual frequency of my treatments.

 

Pretty good news to start 2015 with!