Tuesday, May 25, 2010

Fight Outta You

Check out one of my favorite songs by Ben Harper--"Fight Outta You." It has a great message and is more than relevant to Team RenJen's journey, especially with this line: "Like a transplant patient, waiting for a donor. . .don't let it take the fight outta you."

I say it's high-time I make this blog interactive. I'd love it if, in this post's comments section, you would post names of songs you think would be fitting for a pre-transplant playlist for Rene and me. I'll compile them together on our iPods before surgery so that we can each be receiving good vibes from all of you through music.

Let the interacting begin!

Tuesday, May 18, 2010

Team RenJen

Last night I participated in my first Skype conference with none other than (drumroll, please) all of Team RenJen! Rene and Nancy have an amazing group of friends (shoutouts to Jan, Diane, Barbara, Jean, Douglas, and Harold) who have volunteered to be our care team pre-, during, and post-surgery. It was so nice to be able to meet the people who will be a crucial part of my stay in Boston. They were warm, kind, gracious...and really funny!

I can't believe how organized and giving this crew is. Barbara and Jean will be putting me up in their house in Cambridge (which is a quick T ride to MGH) during my stay. I'm so grateful that I won't have to be recuperating in a Red Roof Inn somewhere!

Jan and Diane are my official "go-to" team. They've volunteered to take care of any needs I have (or needs my family may have, for that matter) while I'm in Boston, whether it be a ride to the hospital or a quick run for food or medicine.

Douglas and Harold will be serving as Rene's right-hand men. Rene is going to have a much longer and more sensitive recovery than I will face, and Douglas and Harold will be there to provide whatever she and Nancy might need. Plus, Douglas is also getting us all signed up on the website Lotsa Helping Hands, a site where people will have the opportunity to coordinate care for Rene and me without having to make ten phone calls to do so.

I've never had a whole team of people at my disposal before; they say this is an "altruistic" donation, but I'm liking the sound of what life in Boston will be like for me. :)

In all seriousness, I do feel incredibly grateful for the kindness these folks have already shown me. I think we live in a time and place that is surrounded by a lot of junk. I mean, just check out the headlines in today's New York Times: "Grim Milestone: 1,000 Americans Dead," "Thai Government Rejects Cease-Fire Talks," and "Doctor Charged in N.F.L. Doping Case." And what does it say that NBC Nightly News' most popular feature is its "Making a Difference" segments: stories about ordinary people, well, making a difference? I know what it means for me many nights; it means I sit through 25 minutes of disheartening news stories--just so I can hear one uplifting one.

How does this relate to Team RenJen? Well, I think it's easy to get sidetracked by the junk out there. We read the headlines and watch the news, and day by day, even if it's subconsciously, we lose our faith in people's abilities to do what's right. However, my experiences with Team RenJen (and I haven't even gotten to Boston yet) help me believe what I think I know in my heart: that there are plenty of people with plenty of stories out there that could fill every half hour of every NBC Nightly News with "Making a Difference" segments.

Thanks, y'all!

Monday, May 17, 2010


So, I've had a lot of people asking recently if I'm scared about the surgery. Why not answer through blog?

Really, I don't think "scared" is the word for it...more like "petrified"! Kidding, kidding. No, in actuality I'm really not scared at all. I guess the closer that we get to transplant day (36 days now!), the more and more I feel the "bigness" of it all. I find myself thinking: "Wow, pretty soon I'm going to have one less organ." That doesn't feel scary to me as much as it feels surreal.

I'm not naive and know that anything can happen, but I also know that anything can happen...anytime...anywhere. The scariness of life surrounds us; it doesn't just show up in a kidney transplant. I've really been taught the lesson in my own life as of late (a lesson learned outside of thinking about this surgery) that we can't cower in a corner because life is scary. Instead of worrying about what will happen tomorrow or the day after tomorrow, we have to live life one day at a time--rejoicing in the awesomeness of it and dealing with the chaos it brings as it comes. That way, we don't miss the great things, don't waste energy fretting the scary things that never come to be, and have the strength to confront the latter when they do appear.

Plus, it's pretty hard to be scared knowing how "easy" this laparoscopic surgery really is and knowing what stellar (some of the best in the country) doctors will be taking care of me.

So, my answer? I'm not skeered!

Saturday, May 8, 2010

Just in case you're interested. . .

Here is a link to a video that shows clips of both the donor and recipient surgeries (I know, not for everyone), as well as interviews with doctors concerning kidney transplants. There is also an interview with both a donor and a recipient.

For More Information:

Check out these sites:

MatchingDonors-Where I met Rene!

National Kidney Foundation for more information on kidney disease and transplant

United Network for Organ Sharing (UNOS) for data on the transplant waiting list and on transplants in the U.S.

Logistics (including a trip to Boston)

One of Harvard's gates. "Enter to grow in wisdom"
Downtown Boston
Rene pointing out which kidney she wants. :)
Rene's partner, Nancy, Rene, and me.

Rene and I at the bed and breakfast I stayed in while visiting Boston.

Once the decision was made, it was time to put thought to action. Here's how we did it:

-Rene receives care at Massachusetts General Hospital (Harvard's teaching hospital) in Boston. Once I decided I wanted to see if I would be a suitable donor for her, she gave me the name and contact information of MGH's donor coordinator. I called him to express my interest in donating a kidney to Rene, and he explained the nuts and the bolts of the process to me.

-After contacting Mass General, the first step was to see if I was actually a "match." Rene and I already knew we had the same blood type, but we also had to have a similar blood antigen profile in order to go forward. MGH sent a blood typing kit in the mail to me at my residence in Chicago. I took the kit to a nearby walk-in clinic, had them draw blood to fill the tubes provided, and then the kit was sent back to MGH to be tested (for those of you wondering, I did not and will not have to cover the costs for any of these procedures). I'm not sure how long we waited, maybe a week, but eventually the donor coordinator called me and gave me the good news that I was, indeed, a match for Rene! Since I was in charge of my own medical information, I was the one to call Rene and give her the good news. It was one of those beautiful "Are you sitting down?" conversations. :)

-Next up: visiting Boston for more in-depth testing. In the late fall of 2009, I flew out to Boston for two days of tests and meetings at MGH. Rene and her partner, Nancy, picked me up from the airport and we actually got to meet in person for the first time. Rene said she wanted to turn me around after hugging me and point out which kidney she wanted, but didn't want to scare me away. I would have welcomed the gesture. :) Rene and Nancy were gracious enough to put me up in a beautifully quaint bed and breakfast in Cambridge-- which was an easy walk to the T (Boston's subway system) that would bring me straight to MGH's absolutely enormous hospital campus. My first round of meetings and tests started on an early Thursday morning. Rene waited with me in each of the waiting rooms, and we were able to get to know one another more fully. I met with my donor advocate (whose job, as the name implies, would be to advocate for me, and only me, in the process), the donor coordinator (who explained the process in more detail), a social worker, and a nephrologist (kidney doctor). I also had a physical exam, lots of blood drawn, and an EKG. After a long day, Rene, Nancy, and I all met up with friends of theirs for dinner. One of the best parts of the dinner was that the people we met were a couple--one member of which had donated her kidney to the other. Therefore, Rene and I were able to get great input from people who had gone through the process.

The next day in Boston I met with a psychiatrist who would need to determine whether or not I was emotionally healthy enough to donate an organ and to make sure I was doing it for altruistic reasons. I also had an IV contrast scan done, which was quite the experience. I was given an injection of contrast dye--the best way I can describe the sensation this gave me was that it sent a warm rush through me--kind of like taking 5 shots of whiskey at once...or what I would imagine that to be like, anyway. The tech also warned me that it would make me feel like I was, quite literally, peeing my pants--but not to worry--I wouldn't be. I was kind of like "yeah, yeah" to that...but then as soon as he gave me the injection I started freaking out: "Oh my god, I'm peeing my pants. Shit! I'm really peeing my pants!" Luckily, he was right, I did not actually do the deed. Freaky, though. Anyhow, they sent me through a CT scanner, which took a scan of my abdominal organs, and kidneys to be exact. Later that day I met with the doctor who would become my surgeon, should everything work out, and got to see 3D images of my kidneys. Pretty cool! Everything checked out with my little kidney beans and the surgeon determined he would use my left kidney for the procedure.

-After my trip to Boston, Rene and I had to endure more waiting around. Every member of the donor team that I met with would get together to conference about whether or not I would make a suitable donor. While waiting, there were some other tests done in Chicago, a chest-xray and a couple of 24 hour urine catches. Um, if you've never done one of these, don't be jealous. It involves collecting all of your urine for a day. Maybe it's much easier for guys? Anyhow, after about a month, I received a phone call informing me that I was good to go! The surgery was on!

-Rene and I decided to schedule the surgery for June 22nd. I will fly up to Boston about a week before that date to have last minute tests and meetings with doctors. My wonderful mom, dad, and little brother Ryan will be flying up just before the surgery and staying a week with me. Amazingly enough, the majority of my surgery will be done laparoscopically and I'll only spend a couple of days in the hospital. After that, it's a week more in Boston for me to re-coup and get the go-ahead to fly back home.

And there you have it in a nutshell!

Meeting Rene

A disclaimer before we begin: This part of the story is always a little uncomfortable to tell. I never want to come across as sounding like I was playing the role of some Higher Power, trying to decide who was "worthy" to receive an organ from me. However, if I was gonna do this, a decision had to be made. And this is how it was made...

When I initially logged on to MatchingDonors, I didn't really have the intention of contacting someone that same night. I just wanted to get a feel for what the website was about and how it worked. I fooled around on other areas of the site before actually looking at patient profiles, but eventually got around to doing the latter. What I found was a lot of sadness, but also a lot of hope. I was strictly looking at people who needed kidneys, and it was amazing to me how hard most of them were fighting--sitting through several hours long dialysis treatments multiple times per week is just the first step in having kidney disease (dialysis a a medical treatment in which all of the blood in a person's body is run through a special filtration machine and then pumped back into the body)--and still were trying to live normal, productive lives. I skimmed through probably 30 or 40 profiles and was about to call it a night when I clicked on Rene's.

There was something different about Rene's profile that struck me almost immediately. The tone that she used to describe herself and her disease seemed so much more upbeat, positive, and hopeful than other profiles I had seen. She described her kidney disease as only one aspect of her life--focusing on her teenage son and the things she lives her life for, rather than the fight she has to undergo to live the life she wants. Something about this hopefulness struck me. I also thought it cool when I read she had promised to take her son, who loves 60's and 70's rock, to Paris after her transplant so that they could visit Jim Morrison's grave. My own teenage brother is also a rock 'n' roll connoisseur, and this was to be just one of the many coincidences Rene and I would find in our lives over the next few months.

I decided to send a message to Rene, not volunteering up any body parts right away, but just to hear more about who she was and what her needs were. We began to get to know one another over the next few weeks. I don't know at what point I offered to begin the process to see if I would be a match; honestly, I think I probably felt it "right" that first summer night I ran across her profile. While many people around me didn't quite understand why someone would choose to give a kidney to a stranger--with legitimate arguments: "What if something happens to you?, What if you need your kidney one day?, What if one of your family members needs a kidney one day?"--it felt just as much a no-brainer decision as the day I got my driver's license and listed myself as an organ donor. I have two kidneys and can live with one. Rene had kidneys that did not work. Why not give her one? I had to believe that if some of those "what if's" that my friends and family members were posing actually came true, that something in the universe would intercede for me--maybe in the same way that it did in bringing Rene and me together.

Another question I heard while deciding to do this was: "If we only need one kidney to live, then why did God give us two?" My answer? Maybe God gave us two so that we can give one away.

So, what's this all about anyway?

Well, my journey started long after Rene's, who has been living for over eight years with End Stage Renal Disease. My entry into the adventure came during the summer of 2009 while I was sitting in a waiting room, reading The New Yorker. I started reading a story about the website matchingdonors.com. I always knew that the list of people waiting to receive organs far exceeded the number of organs that come available each year, but I never knew how staggering those numbers are. For example, in 2001, over 2,000 people died waiting for a kidney transplant. MatchingDonors is a website that tries to bring people who need donations (kidney, liver, bone marrow, pancreas, intestine, and/or lung) in contact with living donors. Patients make profiles, explaining their stories, needs, and pertinent medical information. Think of it as a social networking site for organ donation. Potential donors may also register and search (and if chosen, "be searched" by patients) for people who need transplants.

I remember the days leading up to getting my driver's license; of course I was extremely psyched to have the chance to roll up to school in the family van, but the other thing I remember capturing my attention was my mom's talk with me about how I would need to choose whether or not I would want to be an organ donor upon my death. The decision was kind of a no-brainer for me. I obviously wouldn't be using my organs any longer, and someone else could. I was really intrigued by the whole idea.

I think I probably always knew one could actually be a living donor, but I guess I never knew I could be. I mean, we all hear stories of a brother giving a kidney to his dad or an aunt to a niece, etc. The popular book and newish movie My Sister's Keeper deals with a child being conceived so that she can be a bone marrow donor for her older, cancer-ridden sister. But I never really thought about the fact that many people who need organ donations may not be able to receive what they need from friends or family members--that they continue waiting on that dreaded, yet hope-filled list. It wasn't until reading about MatchingDonors that I really thought about the fact that strangers could donate.

The intrigue I felt when choosing to become an organ donor at sixteen was back. I didn't check out matchingdonors.com right away, but I couldn't get the thought out of my head. I had conversations with family and friends--telling them about the article and asking if it was something they would ever consider. Finally, one Chicago summer night as I was surfing the net, I decided I would check out the site. And that's how I met Rene.