I began this blog about eight months ago with a desire to accomplish two things. First, I wanted to face my affliction by finding out as much as I could about it and, second, attempt to do so in a humorous way. I find that dealing with problems, even serious medical problems, with a degree of jocularity makes me feel better about the whole thing. This is not everyone’s cup of tea (see below), but it is mine. During these seven months, more than 1900 people have looked at my entries, spending an average of 14 minutes per visit reading the stuff I have been cranking out. I would like to think that it is because I have a deft hand at providing information while inserting a little broad humor along the way (hmmm... maybe it is the reverse).
I have made unblushing fun of myself, my little paranoias and other personality quirks. I have made unblushing fun of my family members and friends, medical personnel and administrators, and even my internet service provider. Everyone has been fair game. I have even provided what I think is pretty good music, even though I know that many of my readers turn the volume down so they can more effectively wade through my rhetoric.
I have enjoyed most of the comments that I have received, though I must admit that the vast majority of them have been from people that I know and love. What a surprise to receive a note from the head of the Hemochromatosis Society in Canada, encouraging me in my attempts to get the American Red Cross to relent in their prohibition of hereditary hemochromatosis sufferers from donating blood on a regular basis! I don’t think that I have been very effective, hardly at all, but I was flattered in any event.
Another fellow, “W.Pat” he signs himself, has also left comments from time to time. His, however, have not been personal comments, but rather little information bombshells dropped in his own inimitable “cut-and-paste” technique. I suppose that I would not take umbrage with his entries except for two things: first, he copies the same thing over and over again, and second, he isn’t funny. What’s up with that? So, having someone walk up to the mouth of my verbal cannon, sticking himself headfirst down the hole, and shouting “Fire”, I feel obliged to respond in the only way I know how. Hold on to your bootstraps “W.Pat”!!!!
I am including below “W.Pat”’s latest comments, conveniently divided up into numbered paragraphs. His text is in italics; my piffle is in normal type. I realize that is counterintuitive, but, hey, this is my story!
1. Learn more about hemochromatosis at my blog than your doctor even knows. Preventing cancer of the liver is crucial. Medications should only be used when absolutely necessary. Hemochromatosis sufferers that test with elevated liver enzymes, must avoid acetemetaphen altogether and alcohol should be avoided.
Well, W.Pat, as it turns out my physician, “Doc Holiday”, knows quite a bit about hemochromatosis because I have been as instructive off-computer as I have been on-computer. As it turns out, he too is a technocrat and knows how to “google” just about anything, and I know that he has been diligent about it because I see his cyperprints everywhere I go. As to “medications”, I assume that you are talking about medications to control hemochromatosis, even though there are no such medicines. The only known effective treatment for hemochromatosis is blood-letting, an ancient yet proven method for dealing with my hereditary disease. Acetemetaphen is harder to avoid than both alcohol and liver since hardly anyone has taken the time to find out what that mouthful means. With any luck at all, it will turn out to be another B-vitamin. With regard to avoiding alcohol, every person on the planet would benefit from avoiding alcohol, not just those of us who have livers at risk because of excess iron
2. Foods containing calcium such as cottage cheese, yogurt, carrots, etc are great for slowing down iron absorbtion.
If by “absorbtion” you mean “absorption” I whole-heartedly concur. It would seem reasonable that if you are hammering down vast quantities of dairy products and vegetables there is not going to be a whole lot of room left for red meat. Calcium should be on the menu anyway for old geezers like ourselves. We wouldn’t want to die of “SpoungeBob” disease before some hereditary infirmity carried us off to an open-pit iron mine in northern Minnesota.
3. Too much iron in the liver is worsened with booze.
As it turns out the reverse to also true; too much iron in the booze brings a whole new meaning to “hard liquor”. I have not consumed any alcohol of any kind in fifty years. That is one of the reasons that hereditary hemochromatosis has not had its way with me.
4. Drinks that have tannins work very well also. Black tea and my favorite, green tea are very helpful. Most herb teas do not contain tannins.
Well, “Dr. W.Pat”, as it turns out there are problems with the tannins and their kin that appear in black and green teas. For all of the benefits that might come with regard to inhibiting iron absorption, there are serious liabilities such that I would never recommend the drinking of these teas that you suggest. Why compound your health issues?
5. Vitamin C enhances the absorption of iron. It is wise only to consume a moderate amount and not take Vitamin C tablets. Vitamin C has been known to precipitate heart palpitations in those with hemochromatosis.
I agree. This is a precept that I have been pounding into the heads of my readers for months. Hopefully, your “coffin-nail” comment will cause them to swear off this malignant vitamin and we can all enjoy a good dose of scurvy.
6. The ingestion of black tea has been shown to decrease the absorption of iron. African tea which is becoming popular may contain iron so too much should not be consumed.Patients with hemochromatosis should not take supplements unless there are documented deficiencies.
There appears to be an echo in this rhetoric. See paragraph #4. With regard to African tea, EVERYTHING CONTAINS IRON AND SO TOO MUCH SHOULD NOT BE CONSUMED! If everyone would follow that advice, we would have less obesity in this country.
7. In severe HH the disorder manifests as potentially life threatening conditions such as septicemia, cirrhosis of the liver, liver cancer, diabetes, heart failure and heart arrhythmias.
All of these conditions are side-effects and no one need worry about any of them if their ferritin levels have been brought under control in time. I have none of these ancillary disorders because my sister bugged the daylights out of me to have the blood work done and because my physician, who is as well-informed on my condition as anyone on the planet (see paragraph #1), has put me on a course of phlebotomies that has effectively brought my ferritin levels down to a moderately safe level, notwithstanding all of the fun I have been poking at him along the way. I started out with my ferritin at 826 or so and a couple of months ago, my ferritin stood at 392. My guess is that my ferritin level will be below 100 when I see him next. These intervening phlebotomies will do the trick. That and the fact that I have cut back my “wheat-dog” consumption to only six per week.
8. Hemochromatosis sufferers should drink lots of water every day to keep the blood thin for easier phlebotomies and to keep the kidneys nice and flushed out.
I drink vast amounts of water because I don’t drink vast amounts of booze. I have a Barq’s Root Beer from time to time and although it sounds like I am swilling down alcohol and caffine, it is not the case. I live in Utah, after all, and Barq’s has to tone their stuff down for us. A flushed out kidney is nice, as fresh as a spring morning.
9. For people who are diagnosed and treated early, normal life spans are possible. If left untreated, HH will lead to critical organ damage and most likely death.
Anyone who knows me is aware that there is nothing normal about me. I am the personification of abnormality, notwithstanding the diagnosis and the treatment of my genetic condition. My paternal grandfather lived into his mid-90s; my maternal grandmother lived to be 101. I don’t think that I am going anywhere soon unless I am taken out by some booze-soaked, red-meat-eating barbarian from California who decides to cross the median on I-15 while I am on my way to the store to pick up an extra gallon of fish oil. As to the death benefit, as far as I can tell, that eventuality is going to transpire no matter what we do. Embrace the fact!
10. You can find lots of real life tips from Pat at his blog:
No doubt, but what you will not find is my kind of humor. The only kind of “real life tips” that I might provide will be cooking on the barbeque as soon as the snow melts. Come on up, “W.Pat”, my tri-tip steaks are to die for…. literally.
There is the web-site. Go in peace.
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