Thursday, March 19, 2009

On Tenderhooks

(Yes, yes, I know. “Tenderhooks” should be spelled “Tenterhooks” but I always wanted to start an essay with a parenthetical statement.)

I cannot recall the first time that I heard the phrase “being on tenterhooks”, but I was certain that I heard “tenderhooks”. I knew what it meant simply by understanding what “hooks” were and regardless of what the other two syllables sounded like, if one were on a “hook” it could not be a good thing. I now know precisely what the derivation of the word is and I can assure you that whether you are literally or metaphorically on “tenterhooks,” it is not a good thing.

I went to the Infusion Center yesterday and had a pint drawn. It was a memorably nostalgic experience (Yes, yes, I know, “memorably nostalgic” is a kind of double negative or a semantic reduplication, but I really mean what the words say.) None of the lady nurses would have anything to do with me this time around. They sent “Gory” and his little UVU side-kick “Nickel” to work me over. The first thing that “Gory” said to me when he arrived with his basket of medieval instruments was, “Hi! My name is ‘Gory” and this is my little UVU side-kick ‘Nickel’” (This, of course, constitutes meta-fictional redundancy because I already told you that in the previous sentence.) “Would you mind if ‘Nickel’ does the phlebotomy? She is a nursing student and is only here today during her clinical. She wants to be party to as much blood-spla….., er…, as many medical procedures as possible.”

“Sure,” I replied. “I haven’t long to live anyhow. You might as well move things along.”

“Thanks!” He then turned to the little nursing student, who looked like she was twelve, and began giving her instructions. It was then that I had the memorably nostalgic experience. I was taken back sixty years to the banks of the Middle Fork of the San Joaquin River. My family was camped at Red’s Meadows, then a primitive camping site near Devil’s Postpile in central California. My Dad was taking me fishing for the first time and was teaching me how to bait a hook. Gory’s voice echoed every word my father said to me.

“First you have to find a big juicy one…. Try that one there…. Right…. Now take the point and push it right into the center… Ooops! That went just a little too far. Back it up…. Move it to the left a little…. Now push it in as far as it will go…. Ooooohhh, sorry about that! That’s okay; I have another one over here.”

Then “Gory” turned to me. “You seem a little tense, Dr. Beeblebrox. And clammy! My, you are moist! Dr. Beeblebrox? Dr. Beeblebrox? Zaphod? Are you alright?” Everything went mercifully black for a while. That constituted my literal "tenterhook" episode of the week.

Now I have to wait two weeks in order to have my blood drawn for a check of ferritin levels. I am really curious about this because my last evaluation was in January when my ferritin count had dropped to under four hundred points. Remember that I had started this whole thing with a count of 826, but with each monthly phlebotomy the count dropped an average of 120 points. When I did not have a phlebotomy in December, my ferritin only dropped 50 points or so over the two months. It was then I determined to have a pint drawn in both February and March prior to my annual physical with “Doc Holliday”. If the previous regimen is any indication, I should drop another 240 points of ferritin putting me at about 150 or so. But I will not know for certain until another three weeks have passed. The metaphorical “tenterhook” aspect in all of this is the wait; I want to know now if all that has been going on since the first of the year has been productive, particularly since I am the one who inserted the extra phlebotomy into the calendar. I would really like to know if I have played the fool in this matter. I am, however, as optimistic as ever.

Now for those of you who have been on "tenterhooks" (either literal or metaphorical), wanting and waiting to know the linguistic origins of the word “tenterhook” I submit the following: A “tenter” is a rack or frame upon which woolen or other cloths have been “stretched” after having been washed or dyed. Etymologically, “tenter” derives from the Latin past participle of “tendere” meaning “to stretch”. (Note the “d” in the Latin word; I always seem to intuitively know the right spelling.) Some scholars have also suggested that the word has been influenced by the Middle French word “teindre”, a word meaning “to dye” (But can you trust anyone who likes to eat frogs’ legs?) The tenterhooks were curved nails driven through the frames of the “tenter” which were used to stretch the cloth so that it might retain its intended shape and size. “Tenters” were set out in “tenterfields” to dry. For those of you who are as compulsive as I am about these sorts of linguistic issues, the edges of the cloth that are placed on the “tenterhooks” are called “selvages”, the coarse woven border that usually is discarded when the cloth is finally cut to pattern. This is kind of like the pint of blood that “Gory” and “Nickel” threw away yesterday after dinking around with my veins.

Saturday, March 7, 2009

An Open Letter to

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.

11. Http://

There is the web-site. Go in peace.

Thursday, March 5, 2009

Looking for Iron in All the Wrong PLaces

The last three weeks have been boring. Boring! Boring! Boring! But boring can be good, as you are about to discover for yourself.

My usual cast of characters are in retirement, or at least in a state of grace. Barnacle Raff and I have not been biking for about three months. He says that it has something to do with the enormous snowfalls that we have had this winter. I think it has to do with the number of times he has had to carry my limp and unconscious body to the stoop. The Krrrrakin has told Medicare that all of my bones have been properly arranged and that I need not return, on pain of death. The boys and girls at the Infusion Center have boarded up the doors and windows of their office so that no one taller than five foot eleven can get into the place. That's okay, I really don't have to storm the castle for another three weeks. Doc Holliday said that if I showed up at his establishment before the 15th of April he would issue a restraining order. That is about the time I was planning on going there in any event, so no harm no foul. So the fodder for my verbal cannon is out of range, insofar as the medical industry is concerned. That has been the case for three weeks and will continue for another three weeks until I have another pint drawn.

My daily bouts with the computer have continued, however, and I am well along in my writing, finishing one book, starting another, and plowing through the second half of a third. For those of you who are interested in philately (in sixty-six years I have only met three people so afflicted), I have managed to mount more than 43,000 of my little pieces of colored paper, 41K in the last three weeks. I think that I have the materials for an obsession here. TG2 and I have continued to beat the daylights out of each other at the Rec Center. Yesterday Jen said that she had never seen me move as fast as I did playing. I think that I have become a little more agile with less iron.

Not having my ferritin levels checked for a while has made me a little nervous about what I eat. Trillium and I have only been to a restaurant two times in three weeks. We had lunch at Cafe Rio and, in the spirit of living dangerously, I had a chicken tostada. Later, we went to Subway and I plunged into the iron-acquisition mode by ordering a 6-inch Subway Club. The turkey and roast beef were cut "bridal-veil" thin so that with all of the rabbit food on the bun I suspect that not much in the way of hard iron really made it into my system. At home I indulged myself in a new culinary delight by having a tin of lemon-pepper kipper snacks. I am certain that there is a joke in this, but for the life of me I can't think of one.

As to our experience with Comcast, I should probably give you an up-date. After the first fellow came and complained bitterly about my splitters and all, he assured me that someone would be out to fix the problem on the pole. I waited three weeks for an improvement. None came. I called the service number provided and had a chat with "Jake" who said that he would put two of his specialists on it right away. Dispatch called a couple of hours later to tell me that I did not need two specialists, only one. I said that I had entertained two already, separately, one for the house and one for the pole, and there had been no improvement. She basically then called "Jake" a liar by saying that they never send two technicians at a time to the same house. I told her that I had a blog about this sort of thing that was being read by hundreds of people in over twenty nations and that she was fast entering into my range of verbal fire. The house technician showed up soon thereafter to discover what had been discovered three weeks earlier; the pole technician showed up the same day and did what he had failed to do three weeks earlier. The internet seems to be fine now. So..... on to sweating iron.

Apparently it is possible to sweat iron. I include below a clip taken from the Palo Alto Medical Foundation site which seems to be moderately well-informed.

Iron and your body

Iron is an essential mineral in the human body playing an important role in many different types of cells and proteins. The adult body contains 3-4 grams of iron. The majority of this, approximately 2.5 grams, is circulating in the blood as part of the oxygen-carrying protein hemoglobin which is present in red blood cells. One gram of iron is found in tissues as part of the iron storage protein ferritin; most of this extra iron is stored in the liver. Other iron-containing proteins and enzymes that use iron as part of chemical reactions in tissues account for approximately 400 mg of additional iron. A smaller amount of iron is circulating in blood plasma bound to an iron carrying protein known as transferrin. This protein combines with iron that has been absorbed from intestinal cells and carries it to the cells that need it. Cells signal their need for iron by placing receptors for transferrin receptors on their surface. Another protein called HFE is involved in regulating the amount of iron that is absorbed from the intestine and then distributed throughout the body. In hereditary hemochromatosis excess iron is absorbed for unclear reasons, and the most common genetic mutations leading to hereditary hemochromatosis are in this HFE gene.

Iron enters and leaves the body in several ways. The average western daily diet contains 15-25 milligrams of iron of which ten to twenty percent is absorbed. Additional iron may be obtained from vitamin supplements or blood transfusions. The primary location for the absorption of iron is the first part of the small intestine (duodenum). Iron is lost from the body slowly by several different mechanisms. Sweat carries a small amount of iron with it, and loss of aged cells from the skin, digestive tract and urinary tract account for about 1 mg of iron loss per day. Menstrual bleeding results in a small amount of continued blood loss in pre-menopausal women. Small amounts of iron may also be lost in blood from the digestive tract, for example from stomach irritation or colon polyps.

Now don't you feel learned? I discovered another article in the American Journal of Clinical Nutrition that proposed that sitting in a sauna for extended periods of time (about an hour or so) would bring about iron reduction through sweat, on average about 50 nano-grams per liter of sweat. I don't know about you, but I am concerned about the boys at AJCN. Who thought this study up? (To be fair, Doctors Brune, Magnussen, Perssen, and Halberg, Swedes all.) Where did they get the money? (Since the article was written in 1986 by a pack of Swedes, it is unlikely that we will be able to blame the Obama administration. Although.....) How did they convince 11 people to spend 60 minutes stewing in a Swedish bath? (My guess is that they simply invited seven of their friends over to the house.) Who did they persuade to shovel out all of the liquid iron from the sauna? (Probably a graduate assistant; been there, done that.) And what did they do with all of the results of their study? (It is probably in the same place that the German scholars stored their thirty-foot pile of dead human skin cells. See an earlier blog entry on this study. On second thought, don't see the earlier blog on this study. Once is enough).

Wasn't that worth the wait? Aren't you glad that my daughter asked that fateful question, "Dad, can you sweat iron?" I know that I am glad. Now I think I am going to mess with my music list.