Wednesday, December 22, 2010

Happy Six Months!

Happy six month anniversary, Team RenJen!

You read that right: today marks the six month anniversary of our transplant surgery. It still seems like only yesterday I was hobbling down to Rene's room to see her for the first time after surgery!

Rene and I both wanted to write updates today to let you know how we're feeling. Rene had her six month checkup yesterday and her doctor said her kidney is "well seated" and a "strong" one. I'll let her give you more details about how she's been feeling over the last six months in her own post.

I have my six month checkup tomorrow; I'll let you know how it goes, but I'm anticipating the doctor telling me I'm completely healthy...if not healthier even than before surgery. I'd say that it took about six weeks out from transplant to experience no tenderness at all, but, after that, the only physical reminders of surgery I've had are a few scars and a bit of numbness around my main incision site.

I can't say that nothing has changed for me, however. Rene remains a constant presence in my life--something I'm very grateful for. Whether it's her checking in to tell me she's off to LA or me filling her in on a date I've just had, we have remained connected...beyond the fact that she's now the owner of one of my former body parts. Between Rene and Nancy and the rest of Team RenJen, I've really been blessed by being able to incorporate some amazing people into my life. This experience and all of the people involved definitely reestablish my belief that at its heart, life is good.

The other thing that has really changed for me is that I am much more aware of and outspoken about organ donation. I want people to be aware of the need that exists, as well as the different opportunities there are to fulfill that need, whether by becoming a donor once deceased, by becoming a living donor for someone you know, or by becoming a living donor through a site like Furthermore, I find it necessary to speak to how easy this really was for me. I think fear often holds us back from venturing into many situations in life that, while scary at first, could turn out to be absolutely beautiful in the end. While I can't say that I wasn't scared at all in the few days before surgery, my fears proved to be unfounded. I am healthy. I am happy. And if I had another kidney to give, I'd do it all over again.

Thank you all again for your continued support. It has been so nice to hear from some of you via the blog, Facebook, and email. And thank you for continuing to spread our story.

Happy Holidays, all.

More to come. . .

Thursday, July 15, 2010

MGH was so great, I thought it was a hotel!

Okay, so I just watched this video again that my brother filmed almost right after I got to my room from recovery. It's too funny not to post. I'm obviously still feeling a bit out of it. Check out around the :50 marker when I inquire about "the hotel's" TV guide services. :)

Wednesday, July 14, 2010

Rene's Transplant Tales

I was granted an exclusive interview with Rene, during which she shared with me her transplant experience:

Jen: What was the night before surgery like for you?
Rene: I couldn't sleep, mainly because I was excited. I really wasn't as nervous as I thought I'd be. I kept thinking "Is this really happening?!" I had talked about it, dreamt of it, hoped for it...and I couldn't sleep because I was so excited.

J: So what happened the morning of surgery?
R: I was up at 4 that morning because I had to take a round of anti-rejection meds, and I hadn't been sleeping anyway, so I just stayed up. I got to the hospital just before 6:15 with Nancy, Russell, and Phillip. I was still excited and not quite nervous. They took me directly to my room on Blake [the transplant floor] and gave me my gown and stockings to put on. The nurse told me she would give me a ten minute warning before they took me to the OR. I was so tired that I just closed my eyes until about 8:45 when the nurse gave me the ten minute "warning" and then wheeled me to the OR.

The trip to the OR is still so vivid to me. They wheeled me out of my room, and Phillip, Russell, and Nancy followed me down the hallway up to a point. The person wheeling me to the OR introduced herself as "Jennifer." I immediately told her, "My donor's name is Jennifer!" That was another one of those "meant to be" moments.

Once I got to the holding bay, I decided to wait until I got into the OR to receive some Versed [anti-anxiety medication] because your mom [Jen's mom] had said the night before that she likes to go into the OR and check everything and everyone out before she gets any drugs. While I was still in the holding bay, I asked "Do you know where Jennifer Denis, my donor, is?" They replied that you were across the hall, two doors down. I still wasn't nervous at this point because all my friends and family had kept telling me that they would be saying prayers. I really felt this cloak of their energy surrounding me.

I went into the OR around 9:15 and it was very cold. When they asked me to move onto the operating table, I said "This table is so tiny! How can you operate on it?" The doctor gave me an injection of Versed, I felt relaxed, and then started to notice all the tools they would be using. Then I was given oxygen and was gone.

J: What's the next thing you remember?
R: I remember waking up and looking at the clock and saying "It's 3:15; I can't believe it's 3:15 already!"

J: Were you in any pain when you woke up?
R: I was in a lot of pain around the incision. My whole body wasn't painful, though, it felt like it was aching more than it was painful. The incision was really hurting like the dickens. Nancy, Rene's partner, commented at this point that Rene was hitting her pain pump "like she was having a bad day on Jeopardy."

The nurse came in and asked if I wanted to see my family. I didn't answer because I was still in so much pain. The nurse asked me if I wanted ten more minutes first, and I said I did. When Phillip came in, I remember seeing him try to fight back tears and Nancy kissing his head and saying "It's okay; she's going to start feeling better and better." Someone told me he hadn't eaten all day and I right away said "Phillip, I will be fine. Go and get something to eat."

The other thing I remember doing right away was asking if you were okay. Your mom came in right after I got out of surgery and said "You look so good, Rene!" I started crying and your mom told me you were doing fine and then left to go back to you.

The rest of the night I was just pretty out of it between the pain and the pain pump. Russell started joking around with me because I told him I had seen Nurse Jackie. The pain got better with meds near the end of that first night.

J: What's one really vivid memory you have from your stay in the hospital?
R: I remember I started coming to after surgery and then stopped and realized "Oh wait, I have a kidney!" I raised my gown and got really happy. Then I looked down [at the bag attached to my catheter] and I was peeing!

J: How did it feel to go home with a new kidney?
R: I felt different right away. I felt like I had so much energy even though I had just had surgery. The nurses in the hospital had a lot to tell me about the things I would need to do to stay healthy with the transplant and I kept saying "I'll do anything and everything I have to do. Nothing is too much."

J: If you had to pick a color to symbolically represent the transplant, what would it be?
R: Probably an earth-tone color because I felt so warm and nurtured by everyone. I'd also pick a periwinkle blue because people were all so happy and upbeat. I had such warm, bright, attentive, nurturing people who took care of me.

J: What was your favorite thing to eat in the hospital?
R: On the second day, I got to eat toast and it tasted like the best toast in the world! They even gave me a menu for dinner later that night and that menu was like gold. I pretty much circled everything: grilled salmon, zucchini, broccoli, mashed sweet potatoes, apple-pie, and ginger-ale. It was all really good!

J: What would you like to say to the readers of the blog?
R: First and foremost, thank you for all the support. I hope by reading the blog, you will think about becoming a living donor. I hope by listening to our story you will consider it or share our story with others. It really needs to be heard because there are so many people like me who need kidneys. The longer we languish on that list, the worse it gets for us. I'm also very happy and grateful to you, Jen. You look at the people who come back to dialysis to visit after they've had a transplant and you think "Oh my gosh, you look SO different!" You do feel different. I feel different.

J: Any special shout-outs?
R: To my partner, Nancy. She took care of me in such a loving and sweet way day and night. I love her.
Phillip truly inspires me to be strong. I look in his eyes and I want to be better and healthy for him. I love being his mom.
Team RenJen stepped up to the plate and really took care of us. Everyone needs a Team RenJen.
To Jen's family: dad, adorable Ryan, and mom. Your mom really is like the quintessential mother. I admire how she cared for you.

Sunday, July 4, 2010


These posted in reverse order...but here they are, nonetheless:

Me with Rene right before I was released from the hospital on Thursday
Yay, I get to go home! (a repeat pose from right after I got out of surgery--see below)
My best nurse (my mom)
Little Ry and me
Ryan snapped this almost as soon as I was transferred to my room on the transplant floor. I think I'm still waking up from anesthesia. :)

Waiting. . .

A game of Scrabble was had by some of the members of Team RenJen
I don't know what story my mom was telling, but she seems to have everyone's rapt attention
My dad getting the phone call from my surgeon that everything went well and I was headed to recovery
Phillip and Russell sharing some tunes
My dad taking it easy

Twas the night before transplant. . .

All of Team RenJen (well, almost all--we're missing Barb) the night before surgery at a lovely dinner at Jean and Barb's home in Cambridge

Pre-transplant pictures

Part of Team RenJen at Harold's house for dinner
Nancy and Rene on the "transplant" side of things during pre-admission testing
Rene and me outside MGH on our testing day
Us on my first night in Boston
Part of Team RenJen at Jean and Barb's house for dinner on my first night in Boston

Friday, June 25, 2010

Where to start?

This post's title is really how I feel when approaching this blog. I put off writing yesterday because I really had no idea how to use words to encompass what has happened over the last several days. I suppose the longer I put it off, the harder it will get to summon words of an exact nature, so here we go...

Rene and I were both mainly excited going into the surgery. Our friends and family did (and are doing) such a good job surrounding us with love and positive thoughts. Even down to the wire, they were thinking of things to do to care for us; all of Team RenJen was able to get together for a last minute dinner at Barb and Jean's house the Monday night before surgery. Great food (well, I had to put a hold on eating at 5, so my "great food" was a wine glass full of magnesium citrate--but everyone else seemed to love Jean's cooking) and much laughter was had, followed by an exchange of beautiful words of support and love while we all held hands, basked in the Boston sunset.

I was at the hospital at 5:45 the next morning and Rene followed shortly after at 6:15. We were in separate wings of the massive Mass General campus, so we exchanged a few texts while we both waited, but I was carried away to the OR by about 7:00. I'd say this was probably one of the hardest parts for me. I had to chill out on the stretcher in my OR's induction area (the area right outside of the operating room where they usually anesthetize people) for about an hour and a half before I was put under. It was here that my fear really began to grow and the tears couldn't be held back. Luckily, the nurses in the OR were wonderful, and they all took turns sitting with me, comforting me, and giving me tissues. My experience overall with the nurses at MGH was an extremely positive one, and only makes me want to pursue my own career in nursing even more.

I was finally wheeled into my OR around 8:30, after being given an injection of an anxiety medicine through IV. I tell ya what, if we could all have an injection of that at stressful moments, the world would be a better place! It felt more like I was being wheeled into a magic castle than a place where my organs would be shifted around and one removed. I was moved onto the operating table, I looked around the room a bit, was told I'd start to feel sleepy.....

And that's it! Apparently my surgery ended around 12:30 or so and I was in the recovery room of the hospital for a few hours before they wheeled me up to my room. I only really remember the last hour of being in the recovery room. Maybe this is better, as the things I do remember include telling the nurses I thought I was supposed to be waking up in New York (???), profusely apologizing about not being able to open my eyes to look at the people around me, crying even though I didn't know why--but explaining to the nurses that "My mom said this might happen," and asking in disbelief if the surgery was really over (it felt like 5 minutes had gone by!).

Finally, around 3:30 or so, I was wheeled up to my room on the transplant floor of the hospital. Another embarrassing crying story here: the transporters originally took me to the wrong wing and when I realized this, I started crying. They rushed over and started asking me if I was okay, if I was feeling nauseous, etc, etc, to which I responded "I just wanna see my family!"

It was incredibly good to see my mom, dad, and little brother. I don't think I've ever been so glad to have them by my side. The first day after surgery was a hard one--I was, of course, in pain, the pain medicine they gave me kept giving me hot flashes, and I was pretty nauseous for a bit. But having my family with me made it feel one hundred times better.

This is also when I first learned that Rene was doing great! She had been in a lot of pain upon waking up, but was feeling better by the time I got to the floor and was already experiencing a nice amount of urine output from her new kidney. Along with having my family with me, this news made everything seem easier to deal with.

The days I was in the hospital got easier as they came. The first walk of the day on Wednesday was a hard one--only allowing me to get to the door of my room and back. But by the time my dad got to the hospital later in the morning, he was able to help me walk all the way down to Rene's room at the end of the hall. We both started tearing up a bit upon seeing one another for the first time--but both held back real tears, as any jolt to the abdomen is still pretty tender. By Wednesday I was also off the pain pump and taking pain meds orally, my catheter was removed, and I was freed from the blood-clot preventing leg contraptions they put on me.

On Thursday, Rene beat me down to my room for the first visit of the day! She was walking incredibly well (better than I was, I think!), was still experiencing generous urine output, and all of her numbers were only getting better. I was able to take my first shower (I needed a little help from mom to get dressed again), and then I was able to blow the joint around noon!

So I've spent the last day and a half recuperating at "my new house" in Cambridge. Dad and Ryan visited last night before leaving today. Mom continues to be my best nurse until Sunday when she leaves. Rene should get to leave the hospital tomorrow. Then I go back for a checkup next Friday and should get to leave for home afterward.

I know this post isn't extremely "deep" or thought-provoking, but I thought I would at least let y'all know some of the details of the last few days. It has been hard for me to wrap my head around all of this now that it's done, and, as you could suspect, I've also been very tired--which hasn't left me in the best place for writing. But as I start to "come to" more and more, I promise I will post more meaningful stories about the surgery and about what has come out of it. Hopefully Rene will do another guest post, too, focusing on her surgery experience. I'll also post pictures once I get back to North Carolina.

For now, thank you all so much for your support and love. We needed it more than you know!

Thursday, June 24, 2010

Post-op. Both doing great!

Sent from my Verizon Wireless BlackBerry

Friday, June 18, 2010

Pre-surgery days

Wow-does that countdown clock really read 4 days?! Amazing that after almost a year of planning, this thing is finally happening in less than a week!

I just thought I'd take a moment (or a few moments--I'm currently on a bus to spend my last 'two kidney weekend' in NYC) to fill you all in on the happenings in Boston over the last few days.

It was great to see Rene and Nancy again upon my arrival to Boston Monday night. They really have come to feel like those kind of friends that you can go a long time without seeing and then when you do, you fall right back into place with one another. After they picked me up from the airport, we headed straight to Jean and Barbara's beautiful home, where Jean had a delicious dinner prepared and I also got to meet Harold of Team RenJen.

I spent Tuesday and Wednesday discovering more of Boston. Jean has done a wonderful job of showing me around town--she even took me on a bike ride to Harvard's campus...with a stop at Longfellow's house along the way!

Wednesday was Rene's turn to take me on a tour, but this was after I sat with her for a bit at her dialysis appointment. I was glad I got the chance to do this, as I think it was important for me, as Rene's donor, to more fully understand what living with kidney disease is like for her. Now I also understand why her profile stood out to me the first time I saw it. It was somewhat overwhelming to sit with Rene in a room full of so many other visibly sick people. It was also humbling to get a better sense for what happens for Rene three times a week for three hours. I mean, imagine doing your least favorite activity every Monday, Wednesday, and Friday from 6:30 in the morning until 9:30. Got a good picture of what that would be like for you? Now imagine doing that same thing while in the hospital hooked up to a machine that's taking all the blood out of your body, cleaning it, and putting it back in. And you can't call in sick to this job--your life very literally depends on it.

Back to Rene's profile standing out: I can't believe she has been able to do this for five years and remain as positive and full of life as she has. There are more days in the week than not when I'm pretty bitchy for a good portion of the day just because I didn't want to wake up as early as I did. Imagine what kind of raging bitch I'd be if I also had to go to dialysis on three of those days out of the week. Maybe that's why G-d didn't give me kidney disease and why I owe Rene a kidney. :)

Wednesday and Thursday were also very cool because I got to spend them (sleepovers included) with Rene and Nancy. While I feel like I've known them forever, I've really only met them once before, so it's been awesome to do 'normal' things with them--shopping, watching trashy TV (along with Team RenJen member Douglas), and going to puppy classes.

Thursday was spent (by both of us) at Mass General. I think I had more physicals in one day than I've had in all my life. We also both had blood drawn, an EKG done, and met with different members of the transplant team. Being at the hospital made Tuesday seem much more real for both of us, and while we're both feeling a little nervous about surgery, we're also excited to have it finally happening.

I think we're caught up! Family members arrive Sunday and Monday, I meet with my surgeon Monday, GET to (I'm trying to look at it positively) stop eating and (stop reading now if you don't want to enter TMI zone) take a laxative at 5 pm that same day, and then we're both off to the hospital as the sun comes up Tuesday!

I'll definitely be updating the blog as soon as I'm feeling good in the hospital...or maybe I should try to blog from the recovery room...I'm sure that would prove to be the best post yet! :) Until then, thank you all for your continued support. Please be thinking about us as you wake up Tuesday!
Sent from my Verizon Wireless BlackBerry

Sunday, June 13, 2010

The Schedule

Readers: please pronounce this blog's title as a British person would. You know: "shedule." I think it adds a hint of dignity to my writing. :)

Anyhow, sense of humor (oh, maybe I should stick with the theme and spell that the British way: humour) aside, I thought it might be nice to know what the next week or so holds for Team RenJen.

Tomorrow: I arrive in Boston at 7:15 p.m.
Thursday: Rene and I both have pre-op appointments for the day at Mass General.
Friday: Rene has more pre-op.
Sunday: Russell and Phillip arrive, as do my dad and brother Ryan.
Monday: My mom arrives and I have more pre-op at MGH.
Tuesday: Rene and I both arrive to the hospital around 5:30 a.m. and surgery is scheduled to begin around 8 a.m.

Shoutouts again to Barb, Jean, Diane, Jan, Douglas, Harold and to Rene's and my families for all they will be doing to make the next week a smooth one for us. And shoutouts to all of you out there sending us positive vibes!

Saturday, June 12, 2010

I Believe

Nancy and Rene

Ladies and Gentlemen, please put your hands together and give a warm welcome to the newest guest writer for The Adventures of TeamRenJen blog: Rene!

Just like everyone on this blog, I have enjoyed reading Jen’s journey as my donor, but I would like to take a moment to tell you how our journeys merged almost a year ago.

As many know, I have been living with Renal Disease for over 10 years with the last 5 years on dialysis 3 times a week. In January 2009 my wonderful friend Shereen gifted a lifetime membership to to me, a membership I thought of doing for a couple of years, but just was not ready to do. The timing was right and I submitted my profile to the website. The writing of my profile flowed so easy for me that evening! I wrote about how my kidney disease was a part of my life not my entire life!

My profile:

Greetings! My name is V. Rene Miranda I am the mother of an amazing 16 year old son who is the joy of my life! I have been living with the challenges of End Stage Renal Disease for the past 8 years, with almost 4 of those years on dialysis. I have dialysis 3 times a week for 3 1/2 hours each session. Although my renal disease is a big part of my is not my entire life! I worked in the Development field for the last 4 years in the higher Ed arena until I had to resign my position due to my health. I stay active by volunteering, spending time with my son, and just trying to stay healthy until I receive my transplant. I have been cleared for a transplant, but I need a donor and I hope that will be you! My donor needs to have O blood type negative or positive and be healthy. I am a very upbeat and positive person and I will continue to be hopeful not only for myself but for my wonderful son Phillip. I promised Phillip after I receive my kidney transplant we will go to Paris and see the memorial site of Jim Morrison (Phillip is a huge 60's Rock and Roll fan). If you are interested in being my donor, please contact me at the information listed. I hope you will consider giving me the gift of a healthier life. Peace and abundant gratitude!

After my profile was posted, two months later I heard from a kind gentleman here in MA who tested to be my donor, but due to family difficulties it did not work out. I have to admit I was disappointed, but decided to go back to the site and try again. On August 21st I received an email from Jen Denis. The moment I read her email it just felt right! We bonded even more after that great exchange. So following several more emails and getting the joyous news that we were a match, it was time to finally meet in person!

Meeting Jen!

In late fall, 2009 my partner Nancy and I picked up Jen from the airport; it was a moment I will never forget! The moment I saw Jen it felt as though I had known her forever! We hugged and she had this beautiful smile and warm eyes that just put me at ease. I told her the moment I saw her I wanted to turn her around and point to the kidney I wanted and she actually thought that was funny! That’s when I knew it was a match made in heaven! Jen and I spent the next day at Mass General Hospital where she began a 2-day round of testing. I kept looking at her thinking how blessed I was to have her in my life and how in less than 6 months she would help restore my life to normal again! Jen Denis is my earth angel! Over the past 6 months we have communicated via phone, email and facebook and finally she will be here Monday!

In eleven days the surgery will take place. I am filled with excitement, happiness, and just a touch of fear. In 11 days the most generous, loving, funny, smart, beautiful Jen will become a part of me! I often wonder how I can thank Jen for such a generous gift, and I realize the best thank you is to live a healthy life! Jen you are a part of my family now and we love you tremendously! Thank you, Thank you, Thank you!!!!!

This blog entry is called I Believe, a song by Fantasia Barrino, my theme song for my life with kidney disease. You see I believed that I would one day receive a kidney and that day has arrived…June 22nd! Thank you Jen for helping me believe. Thank you to my partner Nancy who has been such a source of strength for me! Nancy is one of the main reasons I have survived so well with this disease; she has really been there for me and I love her with all my heart. My dear sweet Russell has been my source of true laughter! And he is an amazing father to our son Phillip. Last but not least, our son Phillip, it is Phillip who has provided me with the courage to deal with my kidney disease. Phillip is my heart and soul and I am so proud to be his Mom. Thank you to all my family and friends who have been there for me! And finally a very special Thank you to Douglas Brooks, we are one, I love you!

Peace and Love


Russell and Phillip

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 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 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.