Happy six month anniversary, Team RenJen!
Wednesday, December 22, 2010
Happy six month anniversary, Team RenJen!
Thursday, July 15, 2010
Wednesday, July 14, 2010
I was granted an exclusive interview with Rene, during which she shared with me her transplant experience:
Sunday, July 4, 2010
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. :)
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
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
Thursday, June 24, 2010
Friday, June 18, 2010
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
Saturday, June 12, 2010
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 Matchingdonors.com 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!
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 life...it 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!
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
Tuesday, May 25, 2010
Tuesday, May 18, 2010
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?
Saturday, May 8, 2010
-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!
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.