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Posts Tagged ‘My story’

In case I haven’t mentioned this in a while, I love my brotherJoe was recently back in the hospital with an infection for a brief stay, and took the time to mail me the day’s menu, as a nod to our memories of the marvelous food we had back when we were occupying nearby hospital rooms post transplant.  He highlighted one of the dinner choices: “290: Homemade Salisbury Steak.”  It’s homemade! How can you beat this?!?

Alarmingly, it is the only item on the entire menu that is, apparently, homemade.  The rest must be shipped in from a factory – an idea that scares me a little for items like “132: Garden Quiche” and “956: Cheese Omelet.” 

Ah, hospital food.

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We don’t like to be called “heroes.”  Let’s start there.  At a living liver donor support session hosted at Northwestern Memorial Hospital in Chicago a few weeks ago, that was the nearly unanimous opinion expressed by the 18 or so living donors in the room.  That opinion culled a strong reaction from one family member who was along for moral support, and from the living conor care coordinator Lori Clark and other support staff in the room.  “You all say you don’t want to be called heroes, but you are the very embodiment of the word,” said the family member, if not in those precise words then in something close to it.  “I’ve just never heard that before,” Lori said.  “It’s really helpful to know that!”

Here are some other nuggets that seemed to be consensus among the donors, if not unanimously shared:

  • We wish there were better support after the surgery.  We often feel abandoned by the system (a comment I noted was shared by both donors with easy recoveries and donors with more difficult recoveries alike).
  • Our gift has a major psychological impact on us.  For some, it manifests in chronic depression.  For others, in a long-lasting “high” and boost in self-esteem.  For some, there is a path that wanders between the two extremes.  But there is an impact, and it is profound.
  • We wish we knew our medical team better.  Having random doctors we’ve never met before pop in on us post-surgery is awkward.
  • Food is an issue.  We report post-surgical changes in metabolism, in taste for certain items, in appetite, even in allergies.  Causation may not be proven, but there seemed to be a lot of common stories in the group.
  • Ongoing pain and numbness is also an issue.  People reported not being able to sleep on their stomachs or sides, numbness of the scar, abdominal muscle pain after exercise — even those who were three years out. 
  • We need each other.  The experience is alienating and hard to discuss with people who don’t understand what we’ve been through.

There were some individual stories, not necessarily group consensus, that were fun to hear and share.  Tales of personality changes (“I suddenly like baseball”), of weird dreams, of memories from our nights in the ICU, of immediate post-recovery bloating and vomiting, of constipation, of our first big “walk” down the hall, of handsome doctors and annoying beeping machines. 

It was lovely.

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Long before I became a living donor for my brother (years before we even knew he had a disease arising within him), I began what has become a longtime struggle with chronic depression.  Thanks to amazing family and friends, a very talented and caring therapist, and the well-timed, cautious application of pharmaceuticals, I have managed not only to survive it, but to embrace it as a part of me and to cope with it when it rears its ugly head.

I tell you this because, well, for one thing, it’s such a huge part of me, but also because I continue to learn from it, and I am perhaps just now beginning to appreciate how much what I learn can be applied to my experience as a living donor. 

A case in point:  One of the most important books I read during my struggle with depression was a short, quiet volume called “The Zen Path Through Depression,” by Philip Martin.  I remember being overcome at the time by how Martin’s beautiful, simple descriptions of how depression feels pulsed through the darkness, surrounded me like a blanket, and pulled me to a lighter place.  I remember my sense of disbelief that the author could possibly have articulated my own feelings so well, just by articulating his own feelings. Discovering that someone else understood how I felt was in itself a source of faith and hope.  It was such a comfort.

Recently, I returned to that book to remind myself of some of its teachings.  In a chapter about how hard it can be to find the words to express what you are feeling, and find help through personal connections, Martin writes:

Even for those [friends and family we talk to] who do want to hear, who listen and try to be truly present for us, it is as if we are sending dispatches from a far-off country.  We tell them about the sights and sounds of a land they have not seen, and our words limit us in what we can communicate to them.  Our fears are difficult to put into words.  …

It can be immensely healing to speak to another person who knows or has experienced what we are going through.  We can learn that we are not alone, and that others have been through depression and survived… When we are with these people, we don’t need to expend a lot of energy trying to explain what we are going through.  It is a huge relief to at last be understood. 

It is possible to find someone — or perhaps several people — for whom just a few words tell everything we need them to know.  We can then feel heard, and acknolwedged, and understood.  Often with such a person we don’t even have to speak at all….”

 I love this passage, and I testify that it was true for me both in depression and in becoming a living donor.  It is why I worked so hard to seek out and talk to other living donors during my journey.  It is why I work so hard now to try to connect living donors with each other.

If you would feel comforted or helped by talking to another living donor, either another prospective one, one who has been there and had great results, or one who has been there and did not have the ideal outcome we all hope for, then email me with a request, because I have a roster of donors who are willing to be that knowledgeable, empathetic ear.  Check out the Transplant Cafe and Transplant Alliance sites.  Ask your transplant center team if they can connect you with other living donors from their center.

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Since the point of this blog is to share information and experiences about living donation, from time to time I’ll reprise some of my favorite posts from Chopped Liver, the blog I wrote while I was going through the experience of being a living liver donor in late 2005/early 2006.  This particular entry, written about four months after our transplant surgery, seems particularly timely because I have talked to a few potential organ donors this week and last who are going in for their MRIs and CAT scans as part of their work-up process.  I hope it helps them and any others who are going through work-up procedures.  Warning: the entry includes graphic photos of yours truly’s insides.  You can click here to read the original blog’s full archives from this particular anxious period in my journey.

Chopped and Unchopped: The naked before and after liver pictures

As promised, faithful Chopped Liver readers, below are the most naked pictures of me that you’ll ever find on the Internet: before and after MRI images! (Warning — they’re graphic — look away if you’re squeamish.) The before shots were taken on November 10, 2005, nine weeks before surgery. The after shots were taken on April 27, 2006, 14 weeks after surgery.

I haven’t been over these pictures with my doctor yet, but based on the amount of tissue I see with my untrained eye, it seems to me the volume is back to normal. The shape and position, meanwhile, are, well, off. The doc says that’s typical: “For the first few weeks it just dumps tissue as fast as it can,” he explained. “Then over the next three to twelve months, it re-shapes itself and moves back to where it belongs.”

What he didn’t know, of course, is that “where it belongs” is right here, on the Web. And in that case, here it is, ahead of schedule. Enjoy!

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Hi, readers.  Last night I cried myself to sleep.  There you go – naked honesty.  For reasons that confound me, infuriate me, depress me, and leave me raw, Joe is back in the hospital this week suffering from complications due to strictures and infections that won’t seem to leave him to live his life in peace.  The doctors caring for him are unable to form a concensus on the root cause or appropriate course of action.  As a doctor himself, Joe has a remarkedly mature and informed, active role in his care, but he’s no more able to arrive at an authoritative answer than they are. And he, above all, is an expert in the crap he’s going through.

I’d just as soon not post about this here.  I want to be a rock, for all you potential and past living donors who might need our community’s support.  I want to avoid worrying my mom and dad, who read this blog.  Joe reads this blog, too — and I absolutely don’t want him to see me in sadness.  And when I sit down to write entries for this blog, I intend not to come across as a fragile human being and past donor, but as the objective, helpful representative of a nonprofit business that exists to help people.  A check-your-baggage-at-the-door kind of approach.  But a dear, close friend, who graciously listened to me vent through my tears last night, told me that this painful experience is part of what he thinks belongs on the GGF blog, that my experience as a fragile human being will be as helpful in bringing together living donors as my more clinical, informative entries will. If not more so.

So here it is, raw emotion from your friendly otherwise objective nonprofit founder.  Living donors, it’s right about now that I could use your support.  I’m sad that Joe isn’t better.  I hate answering the well-intentioned question (which I get so often) of “how’s your brother doing?” with the honest reply that, “well, right now, it sucks for him.”  I don’t have any regrets about my own gift, or doubts about the value of it, or lack of appreciation for how marvelous our success story has been so far.  But I could sure use a hug or a supportive email from any of you who’ve been there, or can empathize. Know what I mean?

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I am bowled over with emotion tonight.  Writing this from a corporate meeting in Tremblant, Quebec, alone after an evening out with co-workers, suppliers and clients, I am overcome with a thousand feelings and aware, as ever, of how small a community I have to talk to about the thoughts surging through me.  It reminds me how alone we are as living donors, and yet how the universe offers to connect us as we listen.  I’m swimming in a jumble of gratitude, sorrow for the world, awe of human kindness, and love for my fellow donors. 

On one hand, I’ve been thinking so much lately about Cristy, a woman I met online who attempted to donate a kidney but met with a tragic outcome — a removed organ that could not be transplanted because it “died” after extraction from her body.  And therefore, a desperately excited and hopeful recipient and donor awoken wfrom anesthesia with the unexplainable news that no life-saving organ was inserted, a pair of forever joined souls struggling to understand what went wrong and why.  And I’ve been thinking about how little support exists to help them, and what, if anything, I could do, and our foundation could do, to change the paradigm.

On the other hand, I made one of those indescribable connections tonight, when, out of the blue, one of the attendees at my work conference here in Quebec pulled me aside  at dinner and whispered to me…. “I hear you are a living donor.  I’m also one – I gave a kidney anonymously a couple of years ago.”  I had spent hours talking to this person over the course of our convention here, about work and other topics completely unrelated to organs and transplantation, and it had never come up.  We’d been in each other’s company for a couple of days with zero awareness of our connection.  It was chance that this person had overheard someone else talking about my role as an organ donor, which led to them bringing it up to me.  The donor never told anyone related to work and avoids publicizing it, so wants to keep it under wraps.  But tonight, over a glass of wine at a blissfully private moment, they told me — the whole story about why they did it, how it went, and the impact it has had on their life.   We both appreciated immediately how this connects us as humans on this massive planet, and by how well we can instantly understand our shared experiences before and after.  I struggled not to lose my head, emotionally, until I was here, alone in my hotel room.  We need, as donors, so desperately to connect to share these moments.  Our gift comes to define us and fill our souls, no matter what the outcome of it, and yet there are so few who can understand it.  These connections are so precious to me.

It’s late, and I worry this post will come across like silly blathering.  But it’s honest — I’m seriously just overwhelmed right now by what it all means. 

I’ve noticed with a lot of glee that my daily visitor count is increasing over time, so I know more people are finding this blog and checking it out. If you’re one of those new readers, and if you’re a living donor or somone impacted by one, I hope you’ll take a moment to let me know your’e here, either by email or by dropping a comment.  It means so much to me that you are reading this blog.

And to Cristy and the donor I talked to tonight, you make the world go around for me.  God bless you for being here, and for the gifts you have so freely given to the world at such a great price.

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I don’t want to intimidate anyone by sharing this, but WordPress lets me see in my management dashboard page the search terms people used to successfully find and link to this blog.  Usually it’s stuff you would expect, like “living organ donor” or “kidney donor blogs,” or topical things like “Transplant Games.”  Sometimes it’s something random, like “plush kidney doll” — which gets searched for more than you might guess! — that takes people to this post.  But there have been a couple of fun tangential searches that made me laugh. 

My favorite so far appeared yesterday, and when I read it, you could describe my laugh as a “guffaw followed by a serene, knowing little grin.”  Before I tell it to you, first a short back story:

My surgeon for my living donation (partial liver) was Dr. Alan Koffron, of Northwestern Memorial Hospital in Chicago, IL.  Now, I am a single woman in my 30s, who appreciates a good-looking man.  And let me tell you, when Dr. Koffron walked into the room to see me for the first time, in his nice white doctor coat, I about fell over.  He is, in a word, dreamy.   I of course didn’t plan to tell him that, except I think I might have let something slip as the anesthesiologist was getting started, along the lines of, “Um, PLEASE don’t let me profess my undying love to Dr. Koffron as I’m going under, okay? Promise me!” So, alas, my sweet little crush has been kept silent, unrequited and unshared with the general public. 

Until now, that is, having learned that I’m not alone.  Here’s what someone searched yesterday, resulting in a visit to this blog:  “Is Alan Koffron married?”

Sadly, I believe he is.  On the upside?  He’s an outstanding surgeon, and he leaves a very subtle scar.

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