Monday, August 26, 2013

Take My Blood - PLEASE!

I've mentioned a few times on this blog that blood donation is important to me.  Before I really get into this post (it's probably going to be long), I want to rewind for a moment and explain why.


I was never a blood donor when I was younger, although my mom went (and still do go) regularly.  My high school held an annual blood drive, but I always managed to get out of it, since the drive was always during track season and always right before a meet.  Even after my dad was diagnosed with colon cancer during the spring of my junior year, my dread of needles superseded the "do a good thing" aspect of blood donation.
I started to get the picture when I came to ASU.  My dad had to fly out to the Mayo Clinic in Rochester, Minnesota for a new radiation treatment in the fall of my freshman year, and it began to dawn on me that he had needed blood during all of his previous surgeries (that I didn't realize that this is what a great deal of the blood supply before this point goes to shows my naivet√© and perhaps even how much my parents sheltered me from the reality of my dad's illness).  At one point, I remember talking with my dorm neighbor, and in the course of our discussion, he told me that his parents had donated blood before their own surgeries, in essence pre-donating to themselves.  At the time, this neighbor, who had admitted to me that his parents had their share of health problems, was one of the few people on my floor who knew how sick my dad had been.  Later that semester, we attempted to go give blood at the annual ASU-UofA blood drive competition, which I believe is now part of the Duel in the Desert series, but by the time we got there, the drive had ended (it took me a week to get up the courage to even go).
After that, I kind of brushed it off until the summer before my final semester.  The radiation that my dad had gone through had necessitated stents be placed from his kidneys to... I'm not sure.  Wherever the kidneys drain to or something.  These stents were temporary and had to be replaced fairly often.  But then one of them caused a hemorrhage.  And the doctors couldn't stanch the bleeding for a really long time.  In fact, because of the intensity of the hemorrhage, it took them some time to be able to locate the source of the bleeding.  Later in the summer, he was transferred to the University of Washington Medical Center because his condition, caused by his bleeding, continued to worsen.  I had recently come back from a summer abroad program in Germany, and I flew up to be with my parents.
While he was in the ICU at UW, I finally managed to give my first pint of blood.  It was not easy.  Spending the majority of my days in the dry hospital meant that I was fairly dehydrated, so it took me a looooooong time to get that pint out.  But I did, finally.  And the nurses who were working the blood drive expressed such amazing gratitude over a substance I had truly taken for granted.

In the last weeks of his life, my dad needed over 100 units (pints) of blood.  This was enough to replace his entire body's store of blood more than ten times.  Because of 100 anonymous O+ donors, I was able to spend some more time with him, and most importantly, I was able, one week before he left this world, to tell him that I loved him.  And he was able, even in his heavily sedated state, to tell me the same.
And then he was gone.

Donating blood will never bring my dad back to me.  No matter how many pints I give, he is gone.  But those pints can perhaps help someone else express their feelings to a loved one, may afford a person see a parent one last time, or they can even save someone's life so that it isn't that one last time.
Since my dad died, I have realized that donating blood is something so simple but that can also do so much good, and I have made donating part of who I am.  One of my proudest accomplishments is establishing a blood drive at one of the schools where I used to work, which continues to be successful and collect much-needed blood each year.
As such, I've educated myself on my blood type, how many times a year I'm eligible to donate, and through which type of donation my blood will be best utilized.
So when I was asked earlier this year if I could donate platelets rather than whole blood, I agreed.  It's a longer process, but my blood type, A+, best served that need, so I willingly sat down for the ninety-minutes, knowing that I was doing the most good at that time.
You can imagine my disappointment, then, when I received a letter not too long after my donation informing me that my platelets could not be used due to the presence of an antibody to Human Leukocyte Antigen (HLA) that was found during the testing that is done to blood after the donation.  According to the letter, pregnancy can cause the antibody, which isn't harmful to me, but it can cause reactions in transplant patients.  However, the letter assured me that I was still able to donate whole blood, so while I was disappointed, I wasn't overly distraught knowing that I could still do something good every few months.
I'm not going to go into how frustrating it was to make an appointment after that letter; since I now have a "block" on one or more donation types, I can no longer make an appointment to donate blood online, which is honestly the most convenient method for me.  I'd hope that someone could figure out a simple filter so that I could continue to make my online appointments.
Instead, I'm going to go into how frustrating the wording of the most recent letter I received after finally managing to make an appointment to go in and donate whole blood.
If you've never donated blood before, you need to know that there are a series of interview questions and then a handful of tests before you're even allowed on the donation floor.  The interview asks about health, family history, and lifestyle, all of which could affect the viability of one's blood.  That's how they knew to run my blood through an extra test - women are always asked if they have been pregnant before (or if they are now pregnant).  People with family history of certain known diseases (such as Creutzfeld-Jakob disease) or those who have traveled to different parts of the world for a certain amount of time or more are rendered ineligible.  I was also once deferred because the tech working with me determined that I had an irregular heartbeat, something my actual doctor wasn't able to also determine.  It was my only non-iron related deferment.
One of the other tests that are conducted is the "finger prick" test to ensure that potential donors have enough iron in their blood to donate without risking anemia.  There is a range of acceptable iron levels. I've always fallen in the lower end of the range; there have been occasions when my count was too low and was deferred.  This is not uncommon for many women; due to menstruation and lower testosterone levels, women tend to have lower iron levels than men and sometimes have markedly lower levels if they try to donate during specific parts of their cycles.  When I've been deferred, I've always managed to bring it back up by the next attempt, usually through diet if not also careful timing of my appointments.
At my most recent appointment, my iron levels were once again in the lower range, but they were still within the margin of "normal" or "acceptable."  My pulse, blood pressure, and temperature were also normal, and I still have not spent enough time in Europe or the United Kingdom to be refused.  I was good to go, and a short time later, I was snacking on popcorn and cookies during the mandatory 15-minute post-donation waiting period, during which they fill you up with water and tasty (and often salty) snacks.
Not a week later, I received another letter.
Another f***ing letter.
Here is what the letter stated (in part):

"Thank you for your recent donation.  At that time your hemoglobin level was at the low end of the normal range, so we did an additional test on your blood for ferritin (a protein that stores iron).  The result of this test for iron deficiency show a low value; we're notifying you because this may be important to your health."
The letter went on to tell me exactly what my ferritin level was.
"What does this test result mean?  A ferritin level less than 12 is significant and may mean that you are at high risk for developing iron deficiency anemia.
If you are a whole blood or red cell donor, you must wait 24 weeks...before your next donation to rebuild your iron stores."

And then I was given a toll-free number to call if I had any questions.
I'm not sure I can express how truly upset I was to receive this letter.
I need to clarify that I fully comprehend the need to test blood for viability.  There is no substitute for human blood, but that which is donated must be free of illness because it is always given to someone whose immune system is in some way compromised, be it shock (accident victims), chemotherapy, or even surgery.  The risk for contamination is ridiculously high, which is why every time a disease like sickle cell anemia, AIDS, and bovine spongiform encephalopathy (commonly called mad cow disease) becomes a true danger, people whose risk is considered higher for being exposed to them are taken off the eligible list (for basically forever).
Likewise, I understand that donors need to keep themselves healthy.  Because only about 10% of the donor-eligible population (which makes up less than 40% of the actual populace of the US) actually do donate blood at some point in their lives, the need for blood is always great, and the health community wants to keep donors on the donating end rather than on the receiving end.  I take care to consume foods that are rich in iron and also those which help my body absorb that iron as much as possible.  I also try to take a multi-vitamin, but I really kind of suck at doing that every day.

Here is why I was so upset and what I don't understand.  My hemoglobin levels were lower, yes, but as the letter indicated, they were still within the "normal range."  So.... my hemoglobin was still within the acceptable range, but it still necessitated an additional test, which resulted in benching me for the next six months.
Here is how I heard this: you are earning a D in the class.  This is still passing, but you're going to be placed on an individualized education plan (IEP) and given special education services because you're not performing at an acceptable level.   Oh, and you're also going to be held back a semester.
Anyone who is in education knows that sometimes, students earn Ds.  Sometimes, it's for lack of effort.  Sometimes, students do need IEPs because their performance in some areas is held back due to many possible learning disabilities.  Sometimes, it's for extenuating circumstances that children just shouldn't have to deal with.
But sometimes, it's just a weak area.
That doesn't mean a student is "stupid" or "incapable," and it certainly doesn't mean that every child who is performing below "average" needs an IEP or needs to take a class over.  It just means that sometimes, someone might bust his butt every day and earn that D with as much pride as the person who earned the A with ease.
Sometimes, my hemoglobin levels are a little lower.  But they're still in the normal range.  And I'm feeling like the kid who was called stupid and got held back because I didn't have an A.

What further frustrates me is that this test is only one isolated piece of data.  Now, I am not asking United Blood Services (UBS) to consider every single one-off situation that might arise with hemoglobin, ferritin, and whatever else levels in every single person's blood stream.  But certainly, if there is a test that can ascertain that I have the HLA antibody and then another test that can look for ferritin, there must be one to measure other hormones that ebb and flow for women.  And, based on my own cycle, I know that both my hemoglobin and ferritin were likely low because my hormone levels dropped like a sack of potatoes that weekend.  If I had been paying better attention to where I was in my cycle, I probably would have made my appointment for a different date

Testing is expensive; I know this.  Putting blood samples through an extra litany of tests, multiplied by the number of blood samples that must be tested means that more money is spent on tests than on other areas that might help the blood banks like UBS.
But I am part of that 10% of that 38% of the population who wants to give blood.  Repeatedly.  For no pay save the Corn Nuts and popcorn that are available at the donation center.  I do it because I don't want to be the pint of blood that creates an "if only" situation for a family.  I am right here, United Blood Services, willing to endure extreme "discomfort" as the anticoagulant on the needle hits my skin, in order that someone else doesn't have to extreme endure pain elsewhere.  I walk through those doors ready to donate a pint.  And now I am turned away for half a year.  In that time I could donate three times.  I could help save nine lives.

While I am going to call that toll free number I was given and try to fight this as I choke down an extra helping of kale, I have a request for my readers who are also eligible donors.  Even if you have never donated before, even if you wince at the thought of asking to be poked with a needle, please consider making an appointment in the next 24 weeks.  Please go donate in my stead so that the blood supply does not go without even a single pint for that time.  Every day, 44,000 blood donations are needed.  Every two seconds, someone needs a transfusion.  That's 1800 people in the last hour.  What did you do in that hour?   If you're scared, know that many people in there are scared.  I can't even look at the needle.  EVER.  But imagine how much scarier it is for that child who is watching a parent slip away.  It tends to put everything into perspective.
Please, if you can, won't you step up and donate while I can't?
And then, maybe, you'll want to donate again once you realize how much good sitting still can do.

4 comments:

  1. My daughter went to donate blood a few years ago, only to find out that she will never be too. Middle child had meningococcal disease as a child and even though she survived with treatment it is considered a communicable disease. Thus she can never donate her blood.

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    1. I've had several friends who are unable to for various reasons, and it makes me sad that they are permanently barred, which makes this all the more frustrating because I can be doing that good for those who can't. I'm so glad that your children are healthy, and I know they do other great things. :)

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  2. I am a Commit for Life member here in Houston. A friend & I made a pact to do this together, so four times a year we pick a date, schedule a donation and then go out to lunch together afterwards. The time we spend donating is but a fraction of the time we spend together on those days, which makes it even more fun. We look forward to it! My best advice - pick a friend and donate as a joint effort. It keeps you accountable, and it's a great way to save lives and spend a day with someone you treasure.

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    1. Love that you do that! Husband and I generally take turns, partly because he's a Power Red donor (two pints at a time), and I generally am only able to give one. Also HRH wouldn't really be welcome in the donation center, so we play it safe. Hopefully once I am no longer banned I can find someone to hang out with me for an afternoon. Thanks for donating, Jeanne!

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