Organ Donation

No Greater Love

As I struggled for my life
My Days becoming few
You reached out to help me
My best friend, I never knew

Each day had become a burden
While I clung to my only hope
My family suffered with me
My back against the ropes

God had a plan for me
A plan for you my friend
Our paths would only cross in time
As our lives came near the end

The Father needed you in heaven
The angels a helping hand
That is why you were chosen
Only you, in all the land

My God, my God, your family cried
As you were taken from this Earth
There was a price that had to be paid
But oh, what angelic worth

You showed your love to others
Before they even knew
Your love is a living testimony
I am alive because of you

Your love for me, my love for you
I wish it could be known
So few on this terrestrial ball
Will know this love you have shown

That someone would give their life to another
There is no greater love
How can I ever repay this debt
As you soar with the angels above

So as I wake each morning
I thank the Lord for you
I’ve been blessed by a family and their angel
My best friend I never knew

Jonathan Lequear

Transplant Recipient (16 years), Teacher, and Friend

The subject of organ donation has come up a lot lately in random conversations; so that tells me it is time to blog about it.  It seems that there is a lot of mystery surrounding the idea of organ donation and even some misinformation about how it works.  I am no expert; I'm sure every situation is different, but I thought I would share my personal experience with organ donation, just as a point of reference... I am not a medical expert and my memory could certainly be faulty.

I have always believed in organ donation.  Whereever my soul is going next, it certainly doesn't need my liver, heart, pancreas, skin, bones....well, pretty much any of it.  I love the bumper sticker I saw the other day that said "Donate your organs; Heaven knows you won't need them".  My daughter, and in fact our whole family, also believe organ donation is the right thing, so that made the decision pretty easy for us.  Given the strict guidelines for harvesting organs, it seems amazing to me that matches ever get made and successful transplants happen...but they do!

One of the biggest misconceptions seems to be about the funeral after organ donation.  A lot of people think you can't show the body, but that isn't true.  No matter how much is donated, if you want the body to be shown at the funeral, they will make sure it is presentable for that purpose.  I think I even told people that  the reason we didn't show Michaela at the funeral was because of her organ donation.  I'm not sure why I said that, because it isn't true.  We made the decision to not have her body at the memorial long before the organ donation was even an issue.  We made it for personal reasons.  I can't say now if it was a good decision or a bad one, but it is the one we made.

This is how it went for me.  Very, very late one night, after it was apparent to me that Michaela wasn't going to live, when it was just me, the nurse and Michaela, I asked the nurse a few questions.  I asked about a Do Not Resusitate order first.  To clarify that, a DNR simply states that if the  person goes into cardiac arrest or stops breathing, no effort should be made to revive them; it doesn't mean to stop care.    Then I asked about organ donation and what it would mean for her ability to donate organs if we put a DNR in place.   What I found out was that you don't want a DNR in place to donate organs.  And that it is a very touchy subject to talk about organ donation when the patient is still legally alive...yet from my experience, that is the best and perhaps the only appropriate time to do it.  By the time the nurse and I finished this conversation, we were both sloppy crying messes.  She promised to send the organ donation person to me the next day.

I had not yet, at that point, discussed organ donation with anyone else in the family, except perhaps my husband.  Her father had just arrived and needed time to assimilate the situation and I needed answers before I could make my personal decision; for although it was a family decision to do it, if I had decided no, then it wouldn't have been considered.  The next morning her father and I talked; he also realized that she was no longer using that body and that we should pray for a peaceful end, so it was a relief that we were both of the same opinion regarding sustaining her body's life artificially. We were also of the same opinion on organ donation as her brother, the other most important person in the decision-making circle. 

When the organ donation representative came to discuss it with us, he was very professional and informative.  The first time he spoke to us, it was just my husband and I; her father and brother were out of the hospital.  He answered our questions and gave us information that we didn't even know we had questions about.  There are different types of donars.  The most common ones you hear about are organ donars, but there is also bone and tissue donation and it is a separate issue completely.  Bone and tissue donation is not as appealing to some families because of the destruction to the body or perhaps because those donations do not necessarily save lives but only improve quality of life for the recipient.  We were assured that her face and upper torso would be left in condition for a traditional funeral.  We weren't really interested in a traditional funeral...Michaela wasn't a traditional girl.  I knew what I wanted to do, but I didn't want to pass on the information and risk a mistake, so I asked him to come back when her father and brother were there. 

Organ donation can only happen after the body is officially declared dead.  The concept of 'brain dead' doesn't really exist the way a lot of people think it does.  You can't declare someone 'brain dead' and then harvest their organs.  The body has to die.  It has to quit functioning by either the heart stopping or breathing stopping.  Ideally, for organ donation, breathing stops, but the body is kept viable for donation through a respirator.  In Michaela's case, although there was no upper brain activity, her heart was beating and she was breathing on her own.  She was intubated (on a respirator), and that made a lot of people think that she wasn't able to breath on her own, but that often isn't the case.  The tube simply helps with breathing and is in place in case of further problems.  In her case, they were giving her 10 breaths per minute on the respirator, just enough to sustain life, but she was breathing between 23 and 25 breaths most of the time...easily enough to sustain life on her own. 

The second time the organ donation representative came, we all went in to talk with him.  He again was professional and informative.  What a horrible, horrible job that must be, to talk to families beset with tragedy day after day.  I asked him about this and he said he gets through it by thinking about the families on the other end.  When he was done talking to us and understood our wishes he left.  We had decided to donate everything except her eyes.  For her own personal reasons, she didn't want her eyes donated and we respected that wish.  She said the idea of someone else walking around with her eyes weirded her out and in hindsight, I can understand that...I would feel very strange looking into her eyes in another face.  Anyway, her vision was terrible, so nothing was lost there.

After he left, we discussed the logistics of everything else.  We didn't know when she might die or even if she would.  At this point, she was on a respirator, but not a feeding tube.  If she lived much longer, we would have to put her on a feeding tube to sustain the body or make a decision to take her off the respirator and not put her on a feeding tube--in essence, to starve her to death.  I'm sure that all of the readers are aware of the Terri Schiavo case in Florida where the poor woman was kept on a feed tube in a vegetative state for years and years. 



The Road to Organ Donation-
-the blunt truth of it

 Anyway, that is the blunt truth of it...if you pull the plug on the respirator and the body continues to breath, either you feed them or you don't, but death by starvation, under heavy sedation, is what it comes down to, often.  I find this appalling.  We have more compassion for our pets.  I guess the thought process is that if it is God's will, she will sit up and ask for a cheeseburger, therefore it is not murder.  Of course, under that heavy sedation, asking for a cheeseburger might be difficult...anyway that is a personal issue that upsets me.

After we were done discussing the logistics of what would happen when the time came, we held hands and prayed for a peaceful passing and relief from the pain of having to make any difficult decisions.  I've already written about her death, so I'll just say here that when we came out, she was gone.  The respirator read a straight 10 breaths a minute and the nurse was getting a doctor to do the test that would allow them to declare her legally dead.  From an organ donation standpoint, this is where things become different from other deaths.

What people don't know or don't think about is the logistics involved in getting the organs and the recipients together at the same place at the same time quickly enough to make everything work.  What this means to the grieving family is more waiting.  After they removed the respirator long enough to determine that she wouldn't breath on her own, they reinserted it and we began a vigil of waiting.  There were no more miracles to pray for.  There was no more chance that she might live.  It can take 24-72 hours to put together a series of donations for one donar.  They have to take blood and tissue samples and match them with potential recipients and find the recipients and get them to the hospital and prepped for surgery. 

In the meantime, more and more must be done to keep the body of the donar viable to donate.  Michaela's care went from one IV to several.  She was given all sorts of things to keep her stable, because her body was done working...it was ready to shut down, but we weren't letting it.  I remember that her bed had to be made to periodically roll from side to side and to shake....I don't remember why, although I remember asking and being told.  It was important to me that she continue to have someone with her until she was taken away.  I tried to press on people that there was no difference now than before; she had been 'gone' with no brain activity before, the only real difference was a legal one.  She died when her brain smashed into her own skull on impact at the site of the collision.  God granted her wish to be an organ donar...that is all there was to it.  Most people understood what I wanted and stayed there; some accepted the loss and prepared in their own way for her to be gone.  My friends and hers didn't change a thing, we just kept up our vigil.

It took longer than we thought even; although I can't tell you how long it was.  More than 24 hours.  But we knew there was a definite end in sight.  It wasn't endless and it wasn't meaningless.  It was time with purpose.  It was time for people to say goodbye and for other people, strangers to us--living out their own nightmare, to prepare to start a new life. 

The Hair---also the last picture I ever took of her

Someone, one of my friends, had sought out the Locks of Love people at my request.  I wanted to donate her beautiful hair, but not until the last minute.  My mom had requested to be allowed to cut off her hair as her final gesture of love.  So we all waited together for that time.  When the time came, it was the middle of the night.  Literally right about midnight.  I'm sure my memory is hazy here; it was a terrible time for me.  What I remember is six women.  Me, my mom, my chosen sister (Karen), my daughter, and two nurses with a really bad pair of scissors.  Who would think that in a hospital they wouldn't have a pair of sharp scissors?  It turned into quite a comical scene as Michaela had a pony tail almost two inches thick and my tiny little mother had to saw through it with dull scissors--two nurses holding her head still. 

I know there were other people in the hospital that night.  I don't know where they were.  Perhaps they were in the room with us.  I simply don't know.  I know that her father and his wife were someplace where they could see the helicopters coming and going taking her away bit by bit to bring new life and joy to others.  I know where my husband was after they took her, but not where he was during those minutes (probably right beside me).  I just remember the women and the thought of how much stronger women are than men in the real world.  

There are multiple organ donation organizations, so I'm sure things are handled slightly differently, but the basics are probably the same.  There is after-donation support for donar families.  I haven't taken advantage of any of these, so I can't speak to their value.  But most importantly there is THE LETTER.  The letter that tells you who the recipients are and what was able to be donated.  I would never have thought that letter would be important to me, but it was.  In fact, I was waiting for it; checking the mail regularly.  The letter doesn't tell you the name of the recipient, only a paragraph about their life.  Their age, their relationships, perhaps their occupation.  It also told us that much of what we had wanted to donate, Michaela wasn't able to do.  Her tissue couldn't be used for unstated reasons, but we think perhaps because of living in Europe, since we can't donate blood.  Her heart and left lung had sustained damage in the accident, but her heart valves were used.  Her kidneys, pancreas, liver, and right lung were all successfully donated.



A photo doesn't do justice to the talent  of this woman

 There is also the possibility of communication with the recipients through the donation organization, and later without the intervention if both parties choose.  What a great gift.  Of Michaela's recipients, only one has contacted us.  That was a miracle in itself.  She told us her story and sent us a beautiful stitchery that she had made with her own hands while she waited and while she recovered.  I know she carries a picture of my daughter with her everywhere she goes.  I hope to meet her one day soon.  But it isn't an intrusive relationship...I know she is thankful and grateful and doing well, and that makes me happy.  That is all I need to know.  I hope someday to hear from the other recipients, but I know it is a hard thing to do and don't expect it.  I don't think less of them for not doing it; how hard it must be for most people to find the words.  The lung recipient who is my facebook friend, was gifted with the ability to say thank you from her heart and for everyone else too.




There are a lot of decisions I question about how we handled the memorial celebration and her remains, but there is no question in my mind that when we donated her organs we did the most important thing right.  And we did what she wanted.