I Donated a Kidney

As some in the sassosphere know, a little over a month ago, our sista, Carolyn, donated a kidney to someone she did not know prior to the procedure.  Following is an abridged email that Carolyn sent to her beloveds once she returned home.  The Sassistas!^TM are deeply grateful to Carolyn for permission to share her extraordinary perspective with all of you.

As I crossed the paved square in front of Hartford Hospital for the last time (for some months, anyway), a gust of wind caught me up the collar of my shirt and prickled the hair on my neck and arms.  I am almost through with this place I thought, and finally allowed myself to relax.  I'd been chewing over the idea, then the endless tests involved with being a donor, for over 15 months.  I'd been needle-stuck endless times, put in MRI tubes about that many . . . oh, and the psychiatrists.  Try explaining that you want to give a kidney to someone you've never met.  Convince three different psychiatrists that you haven't lost your mind; that you're not doing it because Jesus or Buddha or Wonder Dog told you to in a revealing dream; that you'll be alright if the donation doesn't "work" . . . I came out convinced that organ donation was perhaps the sanest thing I'd ever undertaken.  I also found out that my urinary tract was the most healthy part of me.  They told me, in fact, that it was "better than perfect."  I don't know how that can be, but in my case it's a fact.

The whole idea of donating a kidney blindsided me.  I wasn't seeking selflessness, it found me in the most cursory of places, sitting on the toilet reading an article by a woman who was a recent recipient.  It was in the Sunday New York Times about a year and a half ago (click here to read the article).  Reading it, you may, or may not see, what needled itself into my brain and wouldn't let go.  It seemed so simple at the time, that I was sure if I turned it over and over in my mind enough, some essential flaw would reveal itself -- but none ever did.  I found out that day that I was capable of saving a life by giving someone something that I didn't need.  No psychiatrist I talked to could argue with that inescapable truth.

It's not easy giving away a kidney.  You are immediately suspect, and the entire medical system that will perform the surgery and provide you with care afterwards works hard to prove that you're an unfit donor.  They rightly figure if you're committed enough and determined enough and healthy enough to navigate the maze and obstacles they toss up willy-nilly, then you must know what you're doing.  It's an imperfect system, but it works in a lopsided sort of way to weed out those that might jump ship at the last minute.  I found it absolutely maddening to plod along month after month, repeating tests (and some of them hurt) over and over again.  But it did serve to narrow my vision into an absolute commitment to Carole, my recipient.  Once I was far along enough in the process to choose her, I told her, promised her, that I would not change my mind.

Carole finds it difficult to talk to me, even though I can tell that she's a talker by nature.  She stutters and clears her throat a lot and doesn't know what to say.  She does tease me about now having some "charming Southern blood" in her New England family tree, via my delivery of a Mississippi-born-and-raised kidney.  It is, in fact, what she tells all doctors and staff that tend to her.  I can tell, because our appointments in Hartford usually fell on the same day, so I was navigating in her wake -- which was considerable.  She usually wore a bright gold dressing gown with green tassels that looked as if it was straight out of Scarlett O'Hara's windows.  Carole is one of those larger-than-life personalities who revel in life, and I'm so glad that she has a longer one to look forward to now.  She was giddy with the prospect of celebrating Mother's Day, as her family figured that all holidays they shared last year would most likely be their last one with her present.  She called me and said, "Carolyn, I'm going to do good things with this kidney," and I believe her.  The first thing she wants to do is turn the dialysis centers in her community into more than the inhumane warehousing operations they've become.  Plus, she's got grandkids to help raise, and a powerful and eloquent voice that is capable of educating the public about the need for altruistic donation.  I look forward to my communication with her for the next 30 or so years.  If you could have seen the way her granddaughter looked at me, you'd realize the meaning of pure gratitude.

No one does something like this alone, and so many are the reason that I felt capable of taking it on.  Better Half put her life on hold for me to do this and always understood why I wanted to do it!  Incredible!  Debby flew to Hartford to fill-in at Carolyn-sitting, and cousin Sally, Donna, and Gaye stood at the ready to make the trip should I need them.  Flannista and Matissta sent me one of those "Operation" board games so that I could fully visualize the intricacies of kidney-extraction.  Todd helped me get out of a subpoena so that I could make my surgery date.  Sherry took over the management of our household, including dealing with my minute instructions regarding the care of Jack, Murphy and Gracie.  Mr. Bob and Miss Mellie have simply loved me as parents for 18 years and made me realize that I had worth and something to give to this world -- in this case, a kidney, perhaps not what they had in mind.  Anyway, this is beginning to sound like a Nobel-Prize acceptance speech, or, at the least, extremely overblown and I never meant that.  Bottom line is thank you to everyone who has checked on me and made me feel the way that I feel right now.  I wouldn't trade this experience for anything.

And I wouldn't go through it again, either.

Comments

[Flannista]

"It found me in the most cursory of places, sitting on the toilet . . . "

You don't have to go through NASA training, military boot camp or a political election to be a hero. You can just be sitting there, in the middle of your daily routine and your brain will be "needled."

When Carolyn first shared with me -- perhaps six months ago? -- that she was donating a kidney, it went in ear and out the other. I didn't quite believe it. But then in March she flew to Hartford . . . I thought to write an article about kidney donations in general. Then it sank in that she herself was donating a kidney to a complete stranger. I thought, "Now Carolyn has an obit." Not that donating a kidney would kill her. But that donating a kidney would give her a clearly-defined legacy.

Also, at that moment of realization, I was very proud to know her. And still am.

I tend to fret over beloveds who are undergoing challenges or hurting in any way, so I was worried during the entire week of the actual procedure. Better Half included me and babysis on regular updates. The whole thing seemed to go amazingly well, and Matissta and I are grateful.

I will be back often today to hear more from Carolyn about everyday heroism.

You all will have to forgive me, but a scene from "Schindler's List" came to my mind after first reading this post from Carolyn -- the scene in which Schindler's office manager, Itzhak Stern holds up the list that he and Schindler have compiled of the names of Jews Schindler will save. Stern says, ""The list is an absolute good. The list is life."

What Carolyn did for Carole was an absolute good. It was life.

Deep bow to you.

[Flannista]

The donating of a kidney notwithstanding, Carolyn can write. Damn, girlfriend can write.

Several brilliant lines -- the opening one, for example, the gust of wind caught under the collar of her shirt.

Or this one describing healthcare red tape:

"They rightly figure if you're committed enough and determined enough and healthy enough to navigate the maze and obstacles they toss up willy-nilly, then you must know what you're doing."

Or this one about the kidney recipient that captures Carolyn inimitable humor and generosity:

"She usually wore a bright gold dressing gown with green tassels that looked as if it was straight out of Scarlett O'Hara's windows. Carole is one of those larger-than-life personalities who revel in life, and I'm so glad that she has a longer one to look forward to now."

Or this simple line that captures the heart of Carolyn's post:

"If you could have seen the way her granddaughter looked at me, you'd realize the meaning of pure gratitude."

Keep donating your writing, Carolyn, and inspiring all of us to be everyday heroes.

[Flannista]

Carolyn -- the New York Times article that "needled" its way into your brain (sistas and mistas -- there's a hyperlink in the post) is fascinating. A couple of questions -- what part of it specifically "needled" you?

Also, what's your comment about this paragraph from the article?

*****
Maimonides, the 12th-century Jewish physician and philosopher, believed that anonymous giving was nobler than charity performed face to face because it protected the beneficiary from shame or a sense of indebtedness. He was onto something. I ruminated constantly about what it would mean to be related to someone “by organ.” Would my future donor assume a proprietary interest in how I lived my life, since she had made it possible? Would she make sure I was taking proper care of “our” kidney or lord her sacrifice over me? Or would I hold it over my own head, constantly questioning whether I might have said or done anything that could offend or disappoint my donor, anything that might be taken as ingratitude? How could a relationship breathe under such stifling conditions? It was exhausting to think about; I wanted no part of a debtor-creditor relationship. I didn’t want a gift, I wanted a kidney.
*****

Do you have a sense yet what kind of relationship you and Carole have and/or will have?

[Chrysosistah]

Carolyn, you are one cool cat, and a very good writer as well -- thank you for such a thought-provoking article!

I donate blood as often as possible, and not infrequently see plaintive posts on the walls near the donor couches from people seeking organ or marrow donations. I've considered it, but so far no one's needed my specific type. I would be open to marrow donation, but donating a kidney? Damn, girl -- hats off to you!

[Carolyn]

mornin'. Flannista, thank you, and Chryso for kind words.

It's interesting that you mentioned the "donor-recipient" relationship. The article in the Times actually gave me class 101 in the way to handle that dynamic in the exact paragrah you quoted. I've made a concious effort to make the donation truly "altruistic," so I've asked nothing of my recipient. We update one another on how we're doing --got such a delightful email from her only yesterday. But to hear from her is purely a matter of her choice. That being said, our relationship, on whatever level, is still very new and not well defined. And perhaps it should stay that way?

Flannista, you did a good job morphing that email into post. I wish to employ you as my full-time editor, but I couldn't afford your hourly cost.

[babysis]

Carolyn, I'm so glad Flannista finally wore you down to allow this post. It's obvious you didn't do the donation to attract attention or be a hero, so thanks for letting us just be damn proud to know you on any level. Of course you can never donate a kidney to me now, but I still know you'd split the one you have with me, so that's enough.

I too joined in with the psychiatrists when Carolyn first told me she was considering this. I think my first two questions were: "Do you think this will finally make you a good person?" and "Do you have a death wish?" Our discussion that day and since settled my fears and made me so happy to watch as she narrowed her focus to finishing this important mission.

I don't mean to be sappy, but reminded of a mention from yesterday's comments, I think it was akin to giving birth for Carolyn, and her legacy will indeed live on in another person. No telling how many people and generations will be touched in the process. Not bad for an ol' gal from Mississippi.

[Carolyn]

Hey, babysis. Yeah, Flannista did have to work on me for a while, then she'd let up just long enough to let me catch my breath, then start in again. Don't police interrogators use those tactics? Anyway, effective. I just didn't want the telling of it to muddy-up the doing, and you get that, I know.

You'll never know how much your reaction(s) influenced my decision to proceed with the donation. I trusted you absolutely to help me see my way through. If you had planted your heels and been dead-set against it, I would have been led to reexamine my fledgling commitment. Heavy, I know, that power of sway. But you have a clear heart, my friend, and I trust it.

[babysis]

Thanks for telling me, Carolyn, as I had no idea. By the time you told me though, you were more developed than a fledgling. I value your trust greatly, and think you learned a lot about your own heart and instincts in this experience.

Besides, I could never sway you into picking salty ham over sweet at Cracker Barrel.

[Carolyn]

Gotta draw the line somewhere, babysis. I draw it at ham.

[Flannista]

Carolyn -- the post took very little editing. It was my pleasure. I confess to having some wicked delight in wearing you down to let the Sassistas! post the email, too.

I must confess something else -- and I may be speaking for many. I didn't know quite what to say or how to say it when I first learned that you were doing this. I felt sheepish, bereft of words, perhaps even a little embarrassed that I would never even CONSIDER donating a kidney, let alone actually donating one. It forced me to take a hard look at altruism . . . and its true meaning. So thanks for donating a deeper appreciation for altruism . . . and how extraordinary it can be in its ordinariness.

[Flannista]

Carolyn -- I'm curious . . . did a bunch of researchers "study" your case, etc. Will it be part of an article in a medical journal? As far as kidney donations go, was it classic?

Also, what's the worst thing anyone said to you when you were considering this and what's the best thing?

Last, and most important -- what is the precise difference between salty and sweet ham at Cracker Barrel, and is one flavor opposed to another better for your one remaining kidney?

[PEACEsista]

Thank you Carolyn for your generous gifts -- your kidney to Carole and your story and responses here.

My dear friend, Meg, has autoimmune hepatitis, which is destroying her liver. She was told recently that she would need a transplant and should put her name on "the list," (Indeed, Flann, the list of life - an absolute good.) Meg, 56, wants to live, but is still seeking every alternative to "the list." This seems to be a gut-wrenching decision on BOTH sides of the equation. I always assumed I that it was an easier life-or-death decision for the recipient, but I am learning that is not true for Meg.

Anyway, one day, Meg and I may be praying for a donor. Though it is different circumstances for a liver donor, it is heartening to hear of such generosity in the world. I really feel the gift you've given. You've saved someone's best friend, grandmother, partner - a precious gift ... multiplied.

[Carolyn]

Flannista, altruistic donation seems to be the medical communities' most encouraged "secret". Whenever I began the process, every clinician I met with checked me out like a rare lab rat. They were delighted to have me there. At one point I told them, "I feel like a rock star," because there was a fair gathering (especially of the psychology dept. staff), whenever I showed up for an appt. I answered questionnaire after questionnaire, as if they wanted to "de-code" me somehow. Whenever I first contacted the donor-coordinator at the hospital, she told me (with deep sigh), that she would mail out the donor packet. But, she told me, "no one ever goes all the way through with it." The reasons why? "It's too difficult. Too many procedures involved, unless you're emotionally invested in the donor." So, yes my case was exceptional, but only by virtue of it's rarity.

My remaining kidney approves of the sweet Cracker Barrel ham.

[Carolyn]

Peace, I am so sorry to hear about Meg. Autoimmune hepatitis pecks at you like a hungry bird, taking your health away in increments. I think that diseases like Meg's, and kidney disease, are just relentlessly cruel in their pursuit of those they afflict. I hope that your friend finds relief in whatever treatment she chooses.

I got an email from Carole yesterday and today, as she prepares for the kidney walk in her community. Her body has changed now that she's lost all of the bloat associated with kidney failure and dialysis. She's already more active in her grandkids' lives. I can't tell you what that means to me. So . . . you get it, Peace. This goes way beyond Carole and me.

[Carolyn]

To answer your questions, Flann, the worst thing anyone said to me was, "What are you getting out of this?" The best thing was Carole's granddaughter asking to meet me and her huge eyes as she thanked me. She was adorable, and I could tell this was just a huge thing to her. We talked for about half an hour and she said, "Grandma's going to like you SO much!" (I hadn't met Carole yet, this was pre-surgery). Then she hugged me as she left and said, "You're like my Grandma's angel."

[Flannista]

"Autoimmune hepatitis pecks at you like a hungry bird, taking your health away in increments." Wonderful and harrowing writing, Carolyn.

I, too, continue to be sorry about your friend, Meg, PEACE. I've known you now for about three years, and all during that time, you've been a vigilant friend to her as she struggles. I'm glad that she has you. Like babysis, you are a clear-hearted friend.

Carolyn -- what's it feel like to be someone's angel?

If you're up for it, could you share what happened the first time you encountered Carole's husband?

[babysis]

Or if you'd rather, Carolyn, tell us about the old bat on the plane ride up. It's Pester Carolyn Day. We want more than your kidney, we want your stories!

[Flannista]

Yeah, yeah, yeah!!!!!! Let's PESTER CAROLYN!!!!!

Tell us a story!!!!! I want a story!!!!!! Come on, Carolyn -- tell us a story or I'm afraid I'll start quoting scripture!!!!!!

[Carolyn]

Flannista, I think you know well the feeling of being someone's angel.

It was a couple days before the surgery and I was seated in the waiting area of the hospital's lab area, reading some ever-present something. Peripherally, I noticed a man exiting the testing area and heading for the door. Then his motion hesitated and stopped, and I became aware of his attention resting on me. I looked slowly up, to self-consciously meet this man's gaze. When our eyes met he looked slightly embarrassed and made a half-hearted step toward me. I'll never forget that moment. He said, "Are . . . are you . . ." and his mouth was trembling. I stood up, walked straight to him and threw my arms around him. It was my donor's husband, who was there to drop off the blood sample they'd taken from her that morning in dialysis. We'd never spoken or met yet somehow there was that moment of crystal recognition. The room was full of people waiting to be tested for any manner of things. Neither of us had any reason to be looking for the other. It was remarkable, and quite a gift.

[Flannista]

I love, "crystal recognition."

Thank you for posting this story.

But you're not off the hook yet. Gotta hear about the old bat.

[Carolyn]

Well now, Flannista, I can practically imagine you sitting in my lap, asking for a story.

Ahem.

I feel like I need to clarify something. I griped in the email that inspired today's post about all of the testing that I went through. But, I was only a couple of days out of the hospital when I wrote that email, and still in considerable pain. Was staying in a hotel room, and upset that they wouldn't allow me to fly home. At that moment, I wasn't operating with the wisdom that hindsight point of view offers. Those tests were all necessary, and it was only by checking me over and over again, that the doctors involved could feel comfortable that they were not violating their "first do no harm" pledge as health care providers. I had to go through a sort've donor boot camp in order to meet their standard of being an acceptable donor. It provided betterhalf with a degree of confidence that my wellfare was being considered first and foremost. And it forced me to get into the best shape I've been in in years, also lower my cholesteral and triglycerides, get schooled about nutrition, etc. In fact, kidney donors, on average, live longer than non-donors because they are more health-conscious.

There are some problems in the system, and I was asked to comment on them recently, as was Carole. But, even imperfect, it made me feel very safe and able to make an informed decision about donating.

[Matissta]

Let me just say Carolyn, what a beautiful gift you are and have provided.

When Flann first told me that you were donating a kidney, I wasn't sure I heard correctly. "What? When? Who?" I mean to donate an organ. To a complete stranger no less. Forget about Sully. I would say that Carole's family probably looks at THIS as a miracle.

I had regularly donated blood in the past and am on the bone marrow list. I've also signed up for organ donation, but only if I die. But this, I have a hard time imagining donating to a stranger. Which seems to be everyone's reaction, including the medical profession. You truly are special to do something so selfless.

Once I heard you speak about your decision, I could tell that you had thought it all through. You had a calmness about your decision. Behavior like that can't be faked.

I also loved the reasons you shared with us as to why you selected Carole. (I'll leave it up to you to share with the sassosphere, if you'd like.)

And as for the post, I was blown away when Flann read it to me as an email. So well written. We're grateful that you agreed to let us post this. Also, thank you for being so generous with your comments and time. We know that you're still recovering.

[babysis]

I'll ask a tough question, although I suspect Carolyn has thought about it. How do you think you'd be feeling right now if something bad happened in the surgery or immediately after in terms of rejection? I know there may still be risk, but to me it sounds like you're past the point of wondering if it was worth it. It clearly has been worth it to the recipient and those who love her. Anyway, I'm just grateful you both seem to be doing so well.

[Flannista]

Wonderful question, babysis. Thanks for asking it.

Like Matiss (and thank you for a lovely comment), I am curious about why you chose Carole. Did you have, say, a folder filled with potential recipients and cull it down? Did it come down to two or three? Was Carole a clear choice from the beginning? Also -- and this may seem stupid -- were you actually handed a folder and told to, "choose."

How did it feel when you heard that?

[Carolyn]

Matissta, thank you so much for your very gracious comment. I remember talking to you from the hotel and how kind and supportive you were -- we had a few laughs, too. That conversation with you & Flann stands out in my memory as one of the most relaxed moments I had before that surgery. I highly recommend a conversation with you guys, tag-teamming, to anyone who needs empathy with a dash of comic relief.

I went to the "matching donors" website to find a potential recipient. Certain criteria -- your blood type, and "choices" (want to give to a man or woman? are you willing to travel?, etc.), help narrow your search. Then . . .there they are. Everyone whose life you might change. You can imagine having a spoonful of food to give to a hungry village. That was tough. Carole found it tough, also, to tell her fellow-dialysis patients that she had found a donor. That was something that I'd never even considered. "Some of them" she told me," even as they hugged me and blessed my good fortune, know that they will die long before a donor is ever located."