As some here may know, (mainly because I've not hid this factoid) I am Eplileptic. I am alsoregistered as a Bone Marrow Transplant Donor. Here is my delimma: After registering, while perusing the rules for donors, I came across a little gem that would disqualify me in the eyes of the Donor progam. It stated that if one has a seizure in (I THINK it was) 3 months, (the time line there is a little fuzzy ATM), then I would not be aloo0wed to donate. Here is my problem with that. I have seizures on a daily basis. From what I understand of the procedure, it is an out-patient, non 'invasive'(they stick a bigass needle in your hip bone) non general anesthesia (local only) procedure. I see no hazard to my health (and I'm quite medically savvy, having grown up in a medical family) that I have determined that should I ever be called as a donor, i will lie about my seizures. I'm not on any meds (none work), the seizures themselves aren't contagious and idf I were to be the only match for someone (out of how many hundreds of thousands?) that will die otherwise, I will NOT allow them to condemn a person to death because of that rule. I know lieing is unethical. But it is more unethical to allow a person to die due to something that will not harm me.
So tell me Hatrackers, what would you do in such a situation? Knowing that you might be the only thing standing between certain death of another human being, and knowing there is no risk to yourself, what would you do?
Posts: 986 | Registered: Jul 2001
| IP: Logged |
posted
My guess is that they're concerned for your safety. What if you were to have a seizure during the procedure? Can they keep you safe if it happens?
Posts: 1892 | Registered: Mar 2002
| IP: Logged |
posted
I don't know why they decided that, but they did. They are the ones who understand all about this stuff, and they make their criteria for good reasons. Or they are good reasons to them. I think it's unethical to lie to circumvent their criteria. What right have you to overrule their right of free choice?
Posts: 2843 | Registered: A Long Time Ago!
| IP: Logged |
posted
Also, thread branching and hijacking are perfectly acceptable here. Things often go off on tangents. It works for us. Posts: 2843 | Registered: A Long Time Ago!
| IP: Logged |
posted
My seizures are non convulsive. At worse, I will lay there in a daze. THAT gives me more insight to my medical problem that they. So yes, if it means that someone can live because i lie then I'll do so.
Posts: 986 | Registered: Jul 2001
| IP: Logged |
posted
You say you have more insight into your medical condition than they do. But they have more insight into the donor process than you do. It might be possible that somebody could lose a life because you lied without having all the information.
Posts: 16551 | Registered: Feb 2003
| IP: Logged |
posted
This is completely unrelated, but I just have to say this. BookWyrm, you need to find and read the play The Last Train to Nibroc. Well, actually, everyone should read it.
It's a beautiful romantic comedy, and the main male character also suffers from epilepsy. Without giving too much away, there is great entertaining confusion when "epilepsy" is confused for another, worse condition.
OK...you may now return to your regularly scheduled thread. Posts: 3852 | Registered: Feb 2002
| IP: Logged |
posted
When I used to draw blood for the Red Cross, I saw my share of "reactions." When we used that term, it could be anything from a Light Reaction (dizziness), a Moderate Reaction (fainting), or a Severe Reaction: seizures.
Not pretty. I'd hate to see you have a seizure, or have continous ones due to a blood donation. It's just not worth it. Not to mention (sorry about this for you people who will get squicked out) the damage a needle that big will do to your arm when you jerk it around while convulsing. Think: bent elbow and a needle that won't break, it will just keep going through your arm and into an artery.
Now, this can happen to people who have never had a seizure before, first time donor, gallon donors, anyone. It has to do with the fluid change. Some people can handle it, some (myself) can't.
Please, I encourage all of you to answer those questions honestly. They are there for the receipant's protection. Don't think you are doing anyone a favor by lying.
And, btw, if I found out you had lied on your questions, I would be under obligation to report it and from there, your current donation would be thrown out, and if the lie were something along the lines of using I.V. drugs (which is one of the questions), it is possible that the person who received your blood would need to be contacted and told (yes, that can be tracked).
Sure, the Red Cross tests your blood. Not once, not twice, but three times. But would you believe it? AIDS/HIV can still sometimes be missed. Why put someone through all of that just for your pride?
Posts: 2064 | Registered: Dec 2003
| IP: Logged |
posted
Here's the reasoning, and a study that suggests that the epileptics should donate
quote:Throughout the world people who have epilepsy and seizures are prohibited from donating blood. These restrictions are based on the assumption that they are prone to adverse donor reactions, specifically, syncope and convulsions. We describe a study evaluating whether that concern is warranted. During a two year period beginning in 1987, blood donors with a history of seizures were actively recruited by the American Red Cross in the state of Maryland, USA. According to accepted standards, adverse reactions were classified as "slight", for dizziness and nausea without loss of consciousness; "moderate", denoting syncope; and "severe", indicating convulsive syncope. We reviewed a total of 329,143 satisfactory blood donations, and 613 individuals reporting a history of seizures donated blood 723 times. Among donors with seizures, 186 (25.7%) were taking antiepileptic medication, and 61 (8.4%) had one or more seizures in the preceding year. Individuals with seizures had a low incidence of adverse reactions (3.34%). Although slightly higher than the entire population (2.24%), this difference was not statistically significant. In particular, the risk of syncope with or without convulsive activity was low for people with seizures (.21%) and not significantly increased as compared to other donors (.28%). Our study supports the view that individuals with seizures or epilepsy are not at greater risk for adverse reactions after blood donation. Major restrictions on individuals with epilepsy and seizures as blood donors are not warranted.
"Regulations prohibiting blood donation by individuals with seizures or epilepsy are not necessary." Krumholz A, Ness PM, Hauser WA, Douglas DK, Gibble JW. Med Law, 1997.
Just to clarify. Very often, medications and procedures will have relative contraindications. These relative contraindications are sometimes things that are assumed to be risky in a situation, but we don't know. For example, when we think a medication would react poorly to a pregnancy, but we don't know. We make educated guesses. But they're not necessarily correct.
It comes down to a similar question: Whether or not someone should be allowed to make a decision outside the recommendations of the blood center. It's not advised =). But lets keep the argument factual and correct. None of this "you're going to kill someone" type of arguments. Because it's just incorrect.
posted
To clarify some more: It seems that the Red Cross used to have much stricter regulation against epileptics donating. After that study, they lessened restrictions so that you only have to be seizure free for 3 months or so.
Again, the reasoning behind the limitation is for the safety of the donor. You're at higher risk for "adverse reactions" because of the frequency at which you have seizures.
Posts: 1892 | Registered: Mar 2002
| IP: Logged |
posted
I'm leaning toward thinking it's unethical to lie on this form. Work to change the system if you think it's wrong, but don't take it upon yourself to make their decisions for them.
Posts: 1112 | Registered: Jan 2003
| IP: Logged |
posted
Ok, since some are saying its ok to let someone die rather than have my marrow, what about this:
Should I have to have a marrow biopsy, they will stick the same needle in my hip and draaw out some marrow. The only difference between the procedures is the amount of marrow drawn. Now, since the procedures are the exact same, how can the justify =NOT taking my marrow to save a life, yet justify taking it for a biopsy? Same procedures in every respect except the amount. And having the biopsy done is regardless of when I had my last seizure because they will do a biopsy regardless of seizure activity
Posts: 986 | Registered: Jul 2001
| IP: Logged |
posted
You know what, BW? I wouldn't worry too much about it. The chances of you getting called up to donate are about 1 in 750,000. The most likely people who are going to be a match are family members of the patient.
Posts: 2064 | Registered: Dec 2003
| IP: Logged |
posted
as I mentioned in the other thread, I was once denied the chance to donate blood because I had a cold. The rationale was that my blood could be given to an immune-compromised patient who would have a harder time fighting my cold germs.
Is it possible that they are looking for someone who is not taking daily medication to combat epilepsy or other seizure-related disorders? If you have daily seizures, then it's likely you are taking daily meds. If you only have seizures once in a very long time, perhaps you don't need the meds. (the "you" in the last 2 sentences is the general "you")
Presumably, if a person who is taking daily meds gives blood (or donates bone marrow), some of the meds in the bloodstream could be given to someone who may have an adverse reaction. It would be very difficult to make sure that the blood or bone marrow is not given to someone who could react badly.
Does any of this make sense to anyone besides me?
Posts: 2034 | Registered: Apr 2004
| IP: Logged |
posted
My, what melodramatic language. Why yes, of course I favor letting people die whenever possible, silly!
I'm saying I'm becoming convinced that it's more ethical to be honest and let the people whose job it is to make those decisions make them. They know what their needs are. If they feel, in light of that, that they don't want to take certain risks, then it seems solipsistic to decide that you know better, and then to act to circumvent them.
-o-
When I was being evaluated psychologically for my fitness to be a Big Brother, and later to adopt, I knew that there were certain facts in my history that would make me more likely to be turned down. Yet, I also believed I would be a good Big Brother, and a good father. Ultimately, the greater good would be to have me filling these roles for children who needed me, rather than adhering to some legalistic formula, right? Maybe, but I decided to take my chances and let the people whose job it was make these decisions. It seemed wrong to me to "lie to do good." And I'll tell you something quite frankly: in the case of my adoption, I was taking a hell of a bigger chance than you. All you stand to "lose" is the "right" to donate marrow, and to pat yourself on the back for being a lifesaver. I risked my likelihood of ever being a father, but it seemed wrong to me to do otherwise.
Posts: 1112 | Registered: Jan 2003
| IP: Logged |
posted
Lets get one thing straight Icarus. I didn't register to be a marrow donor to get kudos. If I want those, I can get up on a stage and sing. I did it so that I could possibly have a GOOD impact on someone life rather than be a waste of space. Should I ever be called to donate, you'll not see me bragging about it. This is something I believe in very strongly. I've had too damn many of you normal people tell me to my face "Why don't you do us all a favor and die" Yes, I have had those words thrown at me. And I'm here to tell you that words DO have power and they affect you. How you perceive yourself and how you think other perceive you. If you don't believe me, go ask the verbally abused and see what they think of themselves. There are even some on this board with that attitude.
So, before you go off saying that I'm doing this to get pats on my back, get to know me a little better.
It more than me losing the 'right' to donate. I could be someones last hope of living. It breaks my heart to see 12, 15, 20 somethings, dying of leukemia and other diseases that otherwise could be halted if they had a marrow match. Maybe not cured, but given a better chance at life certainly. I have a friend right now in the Dallas/Fort Worth area going through this very thing. Her 16 year old daughter is dying of leukimea. So get off my back about what I'm wanting out of this.
posted
Frankly, I think lying on a medical form like that is asking for trouble. Who knows what they would do if you were in fact the only match for someone. I'm sure you'd have a chance to make your case at that point, as would the patient's family.
quote:I've had too damn many of you normal people tell me to my face "Why don't you do us all a favor and die"
um, what the heck are you talking about?
quote:I could be someones last hope of living. It breaks my heart to see 12, 15, 20 somethings, dying of leukemia and other diseases that otherwise could be halted if they had a marrow match. Maybe not cured, but given a better chance at life certainly.
Not your place to decide.
Posts: 1112 | Registered: Jan 2003
| IP: Logged |
posted
BookWyrm -- I don't see a problem since you aren't talking about Grand Mal seizures. Many people think all epileptic seizures are grand mal, and they aren't. As you said, most of your seizures are a short "daze" that passes.
I think the regulations should be more specific on what type of seizure they mean. Most all epileptics have very small, almost not-noticeable seizures frequently -- but the major ones are the only ones to really be concerned about.
My last major seizure was 2 weeks ago. My 'daily' seizures are in the form of extreme vertigo.
The 2 types are: the vertigo I mentioned and Complex Partial Absence. Those are considered Garnd Mal but non convulsive.
Posts: 986 | Registered: Jul 2001
| IP: Logged |
posted
I'm finding myself wondering if you take medications. The meds in your body could kill someone who is allergic to them. Consider Toretha, who reacts to tobacco so strongly that the mere after-scent on a smoker is sufficient to trigger an asthma attack. The drugs in your system could trigger anaphylactic shock which can cause the recipient's airways to swell to the point of total blockage, respiratory collapse (ceasation of breathing), and cardiac arrest.
I've had my offer to donate blood turned down because I had an aspirin too recently. And turned down for plasma donation for having too much fat* in my blood. Don't assume that the medical establishment is directing unnecessary discrimination against you because they set criteria designed to protect the donor and the recipient.
* Drank a quart of milk while eating several chocolate eclairs shortly before going in to donate Posts: 8501 | Registered: Jul 2001
| IP: Logged |
posted
No clue =) I just know about the seizure meds because it listed it right next to the line about seizures. My guess is that the meds you are allowed to be on is determined by the half-life of the medication, the localization of the medication, the effects of the medication, and that sort of thing.
Since blood doesn't get used for at least 2 days (exception: for babies), the half-life of some meds suffice to clear them.
Posts: 1892 | Registered: Mar 2002
| IP: Logged |
posted
Yeah, there are medlists online. I recall showing the list to you last year, Mack. At the time, your meds would have allowed you to donate.
I'm wondering if the rule about no recent seizures is because of the sedation they use during the biopsy. Perhaps some of the meds they use lower the seizure threshhold or something.
Posts: 1990 | Registered: Feb 2001
| IP: Logged |
posted
I don't donate blood anymore due to my husband having hepatitis in his teens. But for some reason in 1995 I registered to be a blood marrow donor. I'm not sure why I did that. There was a drive at work to get people registered. I'm sure I answered all questions honestly. Maybe in talking to them, they said that if I hadn't caught hepatitis yet, they were willing to venture the risk. I still haven't had hepatitis (thank the Lord) but I haven't given blood since I was married.
I did decide to become an organ donor last time I got my license renewed. I also don't have hepatits flags on my medical records. But my husband does. It really bothers him that there is so much secrecy and privacy for HIV carriers, but if you have hepatitis they make sure everyone knows. I forget how this statistic works, but I saw it in an intravenous nursing journal in 1995, 1 in 1000 needlesticks of healthcare professionals results in HIV exposure, 1 in 6 results in hepatitis exposure
Anyway, if I ever got "the call" for blood marrow, I'd definitely remind them of my hepatitis risk status. If someone's life is on the line, they probably don't want hepatitis in addition to what they've got.
Posts: 11017 | Registered: Apr 2003
| IP: Logged |
posted
It strikes me that should BookWyrm be a match (highly unlikely) for bone marrow, it's quite likely that the doctors would a) want to know about the epilepsy and b) be willing to work with it. It would IMO be very unethical indeed to lie, but probably workable to tell the truth, given the situation.
Let's also remember that donating bone marrow is not the same as donating blood; it's a long and painful procedure. A serious seizure while on the table could be a large problem if the doctors are unprepared for it.
Posts: 335 | Registered: Feb 2001
| IP: Logged |
posted
Actually, when I signed up to be a marrow donor, they said that there's this new procedure where the doctors use drugs to make your body produce more stem cells. The cells are filtered out of your blood in a way that is similar to how plasma is collected now. It only takes a few hours, requires no anesthesia, and isn't any more invasive than donating blood would be. Pretty cool, huh?
Posts: 3546 | Registered: Jul 2002
| IP: Logged |
posted
I know that people who are on Accutane cannot donate, and they have to wait a period (a month?) before donation. It causes severe birth defects in children.
Posts: 1364 | Registered: Feb 2003
| IP: Logged |
posted
"Since blood doesn't get used for at least 2 days (exception: for babies), the half-life of some meds suffice to clear them."
Like other drugs, most antiepileptic medications are metabolized&deactivated by the liver. So it's a bit meaningless* to talk about half-life for drugs in blood which isn't being acted upon by the liver.
Plus there is the possibility of dangerous synergistic effects that drugs in the donor's system could have through interacting with the drugs that the recipient is using.
*Yes, I did read the qualification of "some". And since neither of us knows which drugs BookWyrm is using, and BookWyrm apparently wasn't aware of the possibility of his marrow triggering drug allergies nor of adverse drug interactions, it would behoove us to follow the directions of professionals who are trained in the field.
Off the topic but handy to know: Most drugs have a limited amount of time they can be safely used because their chemical structures are fragile enough to undergo spontaneous transformations into inert or even dangerous substances during storage.
posted
Let's see if we can come back to the issue without the heat. You asked opinions on an ethical question, so I am not being contrary if I give that opinion (and I am saying this to reassure myself, not to criticize you). Certainly nobody is telling anybody else to go die.
Your stated opinion:
quote:I know lieing is unethical. But it is more unethical to allow a person to die due to something that will not harm me.
Why I disagree:
1) Your inaction is not "allowing a person to die." You've used that phrase a couple of times, and I think it's overly dramatic. For that matter, I went to sleep last night, instead of patrolling the downtown area. If I had spent the night walking around downtown, I might possibly have foiled a murder attempt (not that I'm a cop, or anything), and so by going to sleep, I allowed somebody to die, right? I don't think so.
Bear in mind that your statement, that not donating allows a person to die and is thus unethical, if true, could be applied to everyone here who is healthy and does not donate bone marrow. Do you want to come out and say that everyone who fits that description is unethically allowing someone to die?
2) People who know more than you do have decided they don't want your marrow. How can you gainsay that? It seems insulting of those professionals for you to set your judgment above theirs.
Posts: 1112 | Registered: Jan 2003
| IP: Logged |
I think in all cases where things are questionable, and you're not sure which way to fall on an issue, choosing to fall on the side of telling the truth is always a good bet.
Posts: 14428 | Registered: Aug 2001
| IP: Logged |
posted
Ok. Here is what I see. Maybe a bit biased but then, having had to endure over 30 years of certain attitudes tends to color one's perspective so bear with me.
The restriction is one people tyhat have had a seizure activity within the last year. Why? What doers a neurological disorder have to do with marrow or blood? A siezure is a short circuit in the brains electrical activity.
Chances of a match are some 750,000 to 1. Chances are that there will be only one match out of those profiles. Without a marrow transfusion, there is no hope. It IS a death sentence. Sure, one can go into remission but that isn't a cure. Sometimes even a transplant isn't. But its more of a chance WITH the tranfusion than without.
It sin't *MY* inaction, but the way in which the rules disqualify me as a potential donor. Nothing else disqualifies me (i.e. giving blood etc) because of seizure activity. Why?
nd I'm only concerned with registered donors. Not every one else. What if you were told you couldn't walk the streets because you had diabeties? Or because of (insert skin color here). Or because you had a broken arm?
What it boils down to is, the disqualifying factor is seizure activity. Not meds. Not because of blood borne diseases. Because of electrical activity that misfires in the brain.
For them to say I'm not 'worthy' (that may not be the right word I'm looking for but its the best I can come up with ATM) enough to donate is also insulting. As if my marrow was somehow inferior to every one elses because of the seizure activity.
The medical field is full of double standards. Its gotten to the point that they will harvest the organs of drug addicts, drunks, Hep positive people for organ transplants among other things, yet because I have seizures I cannot help (should I ever match someone) to possibly save a life?
What I am saying is, I am aware of the risks associated with my condition yet I'm willing to assume that risk if there is a chance it would help someone.
I can't think straight at the moment so I'll revist this when I get my thoughts more organized.
Posts: 986 | Registered: Jul 2001
| IP: Logged |
posted
Well, for what it's worth, I believe am disqualified from donating blood for a reason that strikes me as even more arbitrary and foolish. So I know how you feel.
posted
Here's a weird thought. Why don't we ask a doctor, especially perhaps one who knows something about blood and marrow donations? I said above that I'm willing to bet that doctors would want to know about the epilepsy and also would be willing to work with it, given the situation. So, BookWyrm, since you're the one concerned, why not ask someone what would happen if this scenario should come to pass? If you're not willing, I'll ask a doc friend of mine what he thinks (but he's not a bone marrow specialist).
And, may I say how cool I think it is that bone marrow donation has become such a simple process, owing to the wonders of medical progress. Thanks for that info, Shigosei.
Posts: 335 | Registered: Feb 2001
| IP: Logged |
posted
Dangermom, I have contacted the Marrow Center via email a couple days ago. So far, I've not heard anything.
Posts: 986 | Registered: Jul 2001
| IP: Logged |
posted
Valentine014: Sorry for the delay in replying, been a busy day today and LOTS of T-storms and tornadoes in my area.
I know several people that have had the surgery for their seizures. After knowing them both before and after, I have to say that isn't an option for me. Every one has come out 'different'. And not in the fact that their seizures were relieved. It was major intellectual changes, emotional changes, character changes. Just to give you one example: A female friend, who had convulsive seizures quite regularly, even on meds, had the surgery. Before it, she was a gregarious, garrolous (check spelling on that, I'm too tired tonight) chatterbox. Afterwards, she was quiet, reserved, had to think about each word before she could say them. Needless to say, it was a dramatic change. I'm not going to say her intellect was impacted, but I will say there were some pretty severe side effects that weren't expected. All I have left is my brain. As much as it betrays me, its all I have. Not trying to sound egotistical, but I am highly intelligent, musically gifted and I cannot lose that. Not that way. Even though I am losing it due to my seizures not being controled. I already suffer some neurological deficiencies (again check spelling on that) with slight loss in fine motor skills, loss of balance, and some short term memory loss. Even with that though, I can't consider the surgery option because of the possible radical change it could cause. I feel like I would lose 'ME' if that makes any sense.
Again, I'm going to have to beg off on further reply until a later date as it has been a VERY long day. Eventful, a lot of things accomplished, but very tiring.
Posts: 986 | Registered: Jul 2001
| IP: Logged |
Printer-friendly view of this topic
![[Smile]](smile.gif)
![[Big Grin]](biggrin.gif)
Drank a quart of milk while eating several chocolate eclairs shortly before going in to donate ![[Dont Know]](graemlins/dontknow.gif)
