The Fluid of Life

So it has begun.  I walked into the lab and they took all the information they would take if I were donating blood.  In fact, except that some people were receiving liquids via their veins, it looks like any blood bank set-up to me.   

There were the usual "blood donation questions:   have I been out of the country and to where, have I been "around" any people with HIV/AIDS or Hepatitis, how much water I'd had in the last 24 hours and if I had taken the prescribed aspirin, and which arm would I prefer the needle go into.  As I climbed up on the bench/recliner, I thought of the many times I'd given blood and asked myself if this could be any different. 

Somewhere in my dresser, I have a 10 gallon blood donation pin from the Red Cross.  But it has been over 13 years since I've given blood.  I remember that last time: it was in Mount Airy, Maryland at the gym where we were members.  We'd joined the gym not only for the health benefits, but because it was a great place to network as part of our planting a new church.  I was the last pint of the day.  In those days, they pricked the finger and used a pipette to gather the precious drops and placed them into a test tube of blue liquid to watch the rate at which they descended to the bottom.  If it moved fast enough, your iron count was sufficient and you could give blood.   Mine dropped like a lead balloon -- as it always had.  Looking back, that was evidence of what is now a marked reality: I had too much iron in my blood.  Six months later, I had a heart attack.  Yet another bit of evidence of what is now reality:  When the fluid of life contains too much of a good thing -- Iron overload -- the heart, pancreas, and liver try to hoard it and cause life threatening problems. Heart medications brought an end to my donation days which in turned added to my system hoarding the iron and causing further problems. 

Looks like a Donation setup.

The lab tech made small talk as he scrubbed my arm.  "Just a small pinch."  The needle was in place and the "phlebotomy" was underway.  That's such a strange word: from the Greek roots for vein cutting.  In other parts of the world, it's called "venesection" from the Latin roots of the same words.  Both feel like misnomers to me.  What they are doing involves cutting the vein, but only to extract its contents: iron rich fluid of life.

I'd never had any issues with blood donation. I was always on and off the table in less than 15  minutes. It seemed my blood was anxious to leave my body and move on to give life to someone else.  But not this time.  Despite my faithfully pumping that sponge ball, the blood was slow to descend to the collection unit.  Formerly bright red, it now has a brown tinge to it.  My veins are filled with the mud of irony existence.  Like my "older" body, the substance of life is slow to move, harder to bring into new possibilities.  I drank 2 quarts of water while pumping the sponge ball in the hope that more liquid will help move it along; it only increased my need to get off the table.  Adding to the urgency, I was nauseous and had a pounding headache. 

After an hour of trying to reach to goal of 750 ml, the technician said it is time to give up; next time will go better.  Ironically, when he removed the needle, we had a difficult time getting the vein to stop bleeding.

I set up another appointment for a week later. I sat in their waiting area drinking water and snacking on a bag of salty corn chips.  I hoped I would feel better in time to make dinner at home.  I did my best to make a healthy supper for the two of us.  Then I collapsed into my recliner and struggled to stay awake through the evening's television shows.  

And so it begins, this journey toward "management" of my hemochromatosis, a chronic blood disorder.  I wish I could say I feel better already.  I can't.  I'm tired.  My brain, while having moments of clarity, feels like there's a haze of thick fog between my present and my objectives.  When the haze does lift, I'm overwhelmed by the need to accomplish everything only to have the haze fall deeply and thickly again.  

I long for the day when I will have the energy to climb to the third floor of the house and work on my wood projects, when I will feel like I can go to the gym and still make it through the rest of the day, when I will again see musical notation and hear it in my head, when I will have a long enough moment of clarity to write a thought provoking article or sermon.  

But for now, these are the goals toward which I journey. For now, I can just place one foot in front of the other and make progress in that general direction.  For now, I will lean upon those who journey with me in love, who help to lighten my load, and who are my fluid of life:  Love.   

 For now we see in a mirror, dimly, but then we will see face to face. Now I know only in part; then I will know fully, even as I have been fully known. And now faith, hope, and love abide, these three; and the greatest of these is love.

Swimming Out of the Mud

I exist in the bottom of the gene pool.  That’s the standing joke in my family.  Being the youngest of 10 children, and born when my parents were beyond their prime child bearing years, I’ve had more than my share of health issues.  I’m the one who had sensitive skin and had to have all my clothes doubly rinsed lest I break out in rashes; I was allergic to soap!  I’m the one allergic to bee stings. I’m the one that dislocated not one but both shoulders and elbows as a toddler.  I’m the one who had a major case of chicken pox in my 30’s, a heart attack in my 40’s, and TIA’s in my 50’s.  I seemed to have inherited all the weakest of genes.  I am the mud at the bottom of the family gene pool.  And it has struck again.

A bit of back ground:  When you inherit a recessive gene, it generally causes little to no harm because it is recessive.  It is when you inherit two recessive versions of the same gene that the mutation becomes active.

One exception to this is the HFE gene.  This is the bit of chromosomal matter that controls the way the body absorbs iron in the liver.  There are two common mutations, C282Y and H63D, and one less common mutation, S65C.  Any of these in singular allele has a 50/50 chance of interrupting the body's control of iron absorption and causing iron overload – the body absorbs more iron from food than it needs and keeps absorbing it and storing it in the vital organs.  Double alleles of these, or a combination of any two of these mutation will cause iron overload eventually.  Iron overload will lead to organ damage, particularly liver damage, pancreatitis, and heart disease. 

Lucky me, I have one C282Y allele, and one S65C; only I did not know anything about it.  I’d never heard of hemochromatosis until my oldest son called and asked me about it about 2 years ago.  His iron counts were high and genetic testing showed that he had one allele for the mutation.  Luckily, this has not led to major symptoms for him.  Forgetting that I’m the bottom of the gene pool, I assumed it must have come from his father’s side of the family.  I was wrong.

I've been sick on an off for about 6 months; it’s been such a variety of things that seemed so unrelated: a recurring infection, a few headaches, general malaise.  Since Christmas, however, I've been exhausted and weak. Initially, blood work showed my liver enzymes to be very high.  Further tests have confirmed that my ferritin levels are also high.  And scans show that I have non-alcoholic cirrhosis and diminished liver function.  The genetic tests were the dots on the ‘i’s and crossing of the ‘t’s:  I have active classic hemochromatosis.  Hemochromatosis is the single most common genetic disorder (it is not a disease!) which afflicts 1 in 300 in North America.   I might go play the lottery with these odds!

At this point, the treatment is twofold: a regimen of phlebotomies (blood letting) with the goal of removing accumulated ferritin to bring my counts within the normal range; and a restricted diet that limits high iron foods and foods that increase the absorption of iron while increasing the foods/spices that inhibit absorption. This is a very manageable condition once it's under control.  Once the ferritin levels are down, careful diet and giving blood 4 times a year may take care of it.

In the meantime, while those levels are working their way down with each bloodletting session (phlebotomy), I remain tired. I’m sleeping up to 16 hours a day.  I can’t get through the day without a mid day nap.  And I’m completely done in by 9 each evening even with a nap.  I have no choice but to slow down, stop more often, and take better care of myself.

I'm sick. I will get better. I have to change my life style.  And it's because of this dang-blasted lousy gene pool.  And the mud I got from the bottom of it. 

Here’s the end of my mud bath.  I refuse to roll over and play dead.  I’m getting up and moving on through this thing.  What ever it takes.