So...I couldn't help myself. I had to look up videos of the procedure. Yeah....still doesn't seem fun and I would much rather be knocked the fuck out completely. Here are two videos, one actual video and the other an animation for information. For the first video be advised that there is a small amount of actual blood/bleeding shown.
This is what I get to do tomorrow around 9:30am. I have to admit it is stressing me out a bit...but it has to be done. Sort of like flying; I hate flying, but it sometimes needs to be done. Actually, it isn't flying I am afraid of. Its that whole falling out of the sky and becoming a charcoal briquette on the ground thing that makes me a bit anxious. Same analogy can be applied here.
Sigh. With any luck, I will get some great after-procedure pain meds...
The Information Age is truly a wondrous era. Last night I was doing some more research, visiting various sites with info about hemochromatosis, trying to determine what might be the best changes to make in my diet...all from my iPhone while watching Pierce Brosnan in "The November Man" (not a bad film, actually...). If there is one thing I am certain of with this disease, it is that confusion and contradiction surrounds it. Of easily half a dozen sites I checked out, one half contradicted the other with respect to their dietary recommendations, and multiple contradicted what my gastroenterologist told me directly.
Red meat is a no-brainer here. It sucks, hardcore, for me to have to give it up, being a life-long affirmed carnivore. I used to go into restaurants and, if ordering a steak (typically a nice, juicy rib eye), my standard response to my server was, "As rare as you can legally get it!" when asked how I liked my steak done. I am slowly weaning myself, with this most recent Thanksgiving being one of my "last hurrahs", of sorts, preparing a prime rib instead of the traditional turkey (this had been planned well before my diagnosis and I could not bring myself to change the menu...). Beer was something of a shocker, and equally a bummer as I not only enjoy drinking beer but also brewing it when I am able. Breads, pastas...ok. I had actually been working at curtailing my consumption of those (although having difficulty with pasta...) already. The few veggies I actually enjoy? Yeah...on the list of iron-rich foods. Funny how my gastroenterologist said pork and poultry were good...but several sites disagree.
There are various blogs, as well, started for the same reasons I have started mine...each seeming to disagree with what is best to eat and what isn't. Shocker.
I think the key here, as I begin all of this, is moderation. I am not always that great with moderation, as many who know me well can attest. My liver biopsy is looming closer and closer, something I am still not thrilled about, but the results of which will probably have a greater influence on my dietary changes than anything else. My first phlebotomy treatment is already scheduled and I am actually curious as to how that will help bring my ferritin levels down. Some comments I have seen from others with my condition on other sites actually detail how they do not really change that much with respect to their diets (other than cutting down on the red meat...dammit...) as the treatments have proven to be quite effective at lowering their levels regardless. In the meantime, I have found something of a consensus noting that black tea or milk at meal times helps as well, so I am exploring that.
The need to seriously cut certain foods out of my diet sucks. I would rather focus on what I can actually eat, rather than what I can't. Its going to take some focus and commitment to change, but then you can't get something for nothing, now can you?
On Tuesday, November 20th 2014, at approximately 10:45am, I was diagnosed with hereditary hemochromatosis. This diagnosis came after months of blood tests, an ultrasound, more blood tests, an MRI, more blood tests...you get the point. So, what exactly is hereditary hemochromatosis?
Let's start where I started, looking terms up on-line, shall we? Per Wikipedia:
"Haemochromatosis (or hemochromatosis) type 1[1] (also HFE hereditary haemochromatosis[2] or HFE-related hereditary haemochromatosis[3]) is a hereditary disease characterized by excessive intestinal absorption of dietary iron resulting in a pathological increase in total body iron stores.[4]Humans, like most animals, have no means to excrete excess iron.[5] Excess iron accumulates in tissues and organs disrupting their normal function. The most susceptible organs include the liver, adrenal glands, heart, skin, gonads, joints, and the pancreas; patients can present with cirrhosis, polyarthropathy, adrenal insufficiency, heart failure or diabetes.[6] The hereditary form of the disease is most common among those of Northern European ancestry, in particular those of Celtic descent.[7] The disease is inherited in an autosomal recessive pattern, which means both copies of the gene in each cell have mutations.[8] Most often, the parents of an individual with an autosomal recessive condition each carry one copy of the mutated gene, but do not show signs and symptoms of the condition.[8]"
Whoa, right?
The biggest clue to having this condition is one's ferritin levels. To give you some form of reference, a male my age should have an average range of ferritin in the 22ng/ml to 365ng/ml; mine were noted to be 1295ng/ml. Pretty damn high. After a genetic blood test, it was confirmed that I was positive "...for two mild mutations (homozygous for H63D) within the HFE gene. This individual is homozygous for the mild HFE mutation. The risk for clinical signs/symptoms of hereditary hemochromatosis in the absence of other risk factors (e.g., hepatitis, alcoholism, thalassemia, etc.) is extremely low."
Well, that's good news. I guess. This indicates that both my mother and biological father each carried a mutated gene...and passed the clinical version of the condition on to me. And that's just rather annoying but at least I have something solid to blame on my parents.
Its a genetic condition, so it ain't going anywhere. Ever. However, it can be treated. How you may ask? Through a fun thing called phlebotomy. Basically, I will have to go in and have a unit of my blood removed weekly for about three to four months. Once lab tests show my ferritin levels are down to 50ng/ml, those treatments will be dropped to once every couple of weeks, then once a month, then, perhaps, bi-monthly. This will go on for the rest of my life. My first treatment is scheduled for Thursday, December 11th. Woo fucking hoo.
Right now I have two big concerns. One is that I will have to have a liver biopsy. This does not make me happy, but it is really the best way to gauge what damage, if any, has already been done to my liver. Mine has been scheduled to occur on Monday, December 1st 2014. I am really not looking forward to it at all.
My second concern is not really anything that I can much about and that is the knowledge that I have passed the carrier version of this gene mutation on to my kids. We will have to monitor them and their diets carefully from now on. it isn't like we were feeding them crap before, but we now have to be hyper aware of what they eat.
So that is where I am at in these first few weeks after being diagnosed. I know this condition is manageable and that there are many others who may have better or worse aspects of it than myself, whom are dealing with it proactively via treatments, who have been there and done that when it comes to what I am about to. That doesn't stop it from being scary or frustrating.
I am doing this blog mainly for myself, to log the different things I go through, the treatments, the feelings, as well as information I come across as I study everything I can about it. To that end, I encourage anyone else who has this condition to please feel free to leave comments, suggestions, their own stories, etc. Perhaps by doing so we can not only educate each other and share experiences, but also help everyone else to better understand this disease, one that seems to fly under the radar completely but really should be given more consideration.
