harvey mysel needs a kidney

In April of 2009, I was only in the beginning stages of researching kidney donation. I was having a tough time finding specific information I wanted, and needed, to know. As I mentioned in my first post on this blog, I found a man by the name of Harvey Mysel, on Facebook.

Harvey Mysel

Harvey was the one that I credit for providing me with the much needed information on how to donate a kidney. I am forever grateful for his time and patience. He is a kind soul, and is passionate about his foundation: The Living Kidney Donors Network.

Harvey needs a kidney. I can't do his story justice, but what I can do is help to advocate for him to find a kidney. Please take a moment to read his story, and understand how you can help Harvey find a donor....

Harvey Mysel – Kidney Transplant Update March 1, 2012

The transplanted kidney I received in 2007 has been damaged as a result of the BK Virus I contracted. While the BK Virus is rare and terribly unfortunate, recent studies show that patients who have had the BK Virus do well when re-transplanted. To read more about the BK Virus go to: www.lkdn.org/Kidney_Graft_Loss_BK_Virus.pdf

I would be honored if you would serve as an advocate to let others know about my need. To do that you’ll need to know a few key things about being a kidney donor:

We are born with an extra kidney. Studies show that kidney donors live a normal, healthy life with only one kidney and were no more likely to suffer kidney failure. Go to: www.lkdn.org/Long_Term_Effect_Kidney_Donors_Health.pdf to read a study from the “New England Journal of Medicine” about kidney donors’ health after their transplant. (An interesting fact to realize is 1 in every 750 people are born with one kidney and their life expectancy is the same as someone who is born with 2 kidneys.)

As a result of the new anti-rejection drugs, the “matching” of donor/recipient has become much easier. For situations where the donor/recipient are not compatible, “kidney paired exchange” programs allow these donors to be paired and matched with other incompatible pairs. To learn more about the matching process go to: www.lkdn.org/LKDN_Matching.pdf For more information about kidney paired exchanges go to: www.lkdn.org/LKDN_Paired_Exchanges.pdf

I’m blood type A, and can receive a kidney from a blood type O or A. Interestingly 85% of the population is one of these 2 blood types. The (+) and the (-) after the blood type is not a factor for kidney transplants. If a donor has an incompatible blood type, a kidney paired exchange program becomes an option.

Organ donors need to be in good health, without high blood pressure, kidney, heart, liver or other major health issues. For more details on donor qualifications go to: www.lkdn.org/who_can_be_living_donor.html

Donating a kidney involves a major surgical procedure, and the donor is usually in the hospital 1- 3 days.  The recuperation period is anywhere from 14 - 21 days for those with an office job, and about 6 weeks if the individual’s work entails more physical labor. The majority of the procedures are done laparoscopically, with 3 - 4 small holes for the instruments. A small incision is made to remove the transplanted kidney. Medical expenses relating to the transplant are paid by the recipient’s (my) insurance company (Blue Cross Blue Shield). Donors could be reimbursed for lost wages or travel expenses.

If you would like to learn more about the donation process, please contact me and I would be happy to discuss it in detail with you.

I am working with Northwestern Memorial Hospital in Chicago. In 2010, they performed 167 living kidney transplants, ranking them as the #2 hospital in the U.S. You could contact their Independent Living Donor Advocate, Jami Hanneman, MSW, LCSW, CCTSW 312-695 0828 who could answer questions (confidentially) and coordinate donor activity.

Please feel free to pass this information along to your family members and/or friends. Telling them about my situation will raise awareness and the potential of finding a compatible donor.

I greatly appreciate your support and concern.

Harvey

I ask that any of you in the donor community with a blog or website to please share Harvey's story. Exposure is critical in increasing the pool of available donors for Harvey, and I can't think of a more worthy recipient.

We love you and pray for you, Harvey.

jogging to julia

I'm well rested. I should be, since it's now winter and I think the last time I posted a personal update, there were still leaves on the trees. I say I'm rested because I've been tired, for about 4 months now. Exhausted is more like it. Life is good, but I've been frustrated with a few areas of my life and my brain hurts from thinking too much. I have this ability to endure physical exhaustion much more than the emotional kind. I can work nonstop on my feet for days without a break, but ask me to find a solution to a life problem, and I cave until I can get another 9 hours of sleep.  Let's just say that I'm in transition now. I have made some decisions that I feel are going to be positive and challenging. Gotta have that challenge, right? Challenge is knowledge and knowledge is growth. So, stay tuned for updates.

If you've been following my journey through 2011, you all know that I made a decision to run a half marathon before the end of the year. On October 30, 2011, I finished the Los Angeles Rock 'n' Roll Half Marathon in 2:20:51.

Sweaty, and stinky I'm sure, minutes after crossing the finish line.

My hand-crafted race day shirt, worn proudly.

The race was awesome! I had such a great time. I can still recall so many moments on the course. Probably one of the most rewarding and memorable experiences in my life. Right up there with the county fair. I'm not gonna lie to you, it was difficult and there were moments after mile 11 that I was asking myself why in the hell I chose this challenge instead of a hot dog eating one. But, I powered through and got my second-wind once I caught a glimpse of the finish line and the beer truck.

As I pounded the pavement that day, thoughts of meeting Julia, my recipient, filtered in and out of my head. Excited, anxious, curious and a teeny-tiny bit nervous. I can't say I had any expectations. It's a waste of time, as far as I'm concerned. Like anticipating when Derek will pop the question. I have no doubt he will, I just need to be patient and wait until he can rack in another $20 mil before we settle down.

I was staying in L.A. and she lives approximately 2.5 hours away. We mutually decided to meet at a Chili's restaurant and have a late lunch, so her daughter could join us after school. So, on Halloween morning, I schlepped a gallon of Starbucks coffee and my GPS all the way to Bakersfield, CA.

Me and my big hair arrived early (I'm OCD), and impatiently waited for her to arrive. My hands started sweating and I suddenly started feeling that ickiness in my tummy that would hit me every time I had a blind date. What if she doesn't show? What if she backs out at the last minute because she is having second thoughts?

Ten minutes later (how dare she be late) she walked in with her adorable daughter. We hugged and promptly took a seat in a booth in a hard-to-find, quiet corner. I perused the menu for something that wouldn't give me gas, or add an extra 5 lbs. to my delicate and fragile frame. What I really wanted was a margarita. That would have been a nice Kodak moment to capture, right? Me, my margarita and my California kidney. Conversation was very generic and initially focused on what else, Halloween. We chatted about her daughter and her school, the community and naturally - the weather. I decided that I was not going to lead the conversation, but instead take a step back and let her ask the questions. After all, just having this opportunity to be face-to-face with the woman that now has my kidney inside of her was more than I could ever ask for. Firing questions at her regarding her personal life was in my opinion, none of my business.

She shared much more with me about her journey, her illness, her time on the list, her dialysis treatments and her frustrations of waiting for a donor. She asked few questions, but one of which I didn't expect.

"What made you decide to donate?"

And so, I shared my story, which really isn't too much of a story. "Because I can. Because I wanted to provide someone in need, with just a little nugget of the good health that I was fortunate enough to have every day I wake up. It really wasn't a big deal, Julia."

She looked at me, and paused as tears fell down her cheeks, "It is a big deal, Angela. It's a very big deal. It's a big deal to me, my family and my daughter. You have completely changed my life."

And as she said that, it was then that I realized what I had done. This woman sitting across from me in a Chili's restaurant, in Bakersfield, CA is living with my kidney. Very surreal.

We spent 2.5 hours together, sharing stories of our families, our challenges and our goals. It was getting late, and time for her daughter to begin her trick-or-treating, so we decided to part. As we got up from the table I happened to look down at the floor and noticed a dragonfly tattoo on her foot. I asked her about it, and she told me that she loves dragonflies and collects anything with a dragonfly on it. I immediately thought of my blog, and the illustration featured on my page that I created in the summer of 2010.

Everything happens for a reason.

Julia and I, October 31, 2011 - Bakersfield, CA

exciting news

At 3:40pm today I received a phone call from my transplant coordinator at Weill-Cornell. They have found a match for me! Unfortunately it's not Derek Jeter. Oh, wait... that's another match I'm waiting for. Hubba, hubba.

I'm so thrilled to receive this news today and much to my surprise, it has come much sooner than I anticipated. I don't know much, other than this: it's a 28 year-old female. (We might have a problem here if it's Snooki.)  Apparently her husband wanted to donate his kidney but is not a match for her. Because he is willing to donate his kidney, my kidney donation may be part of a paired donor exchange transplantation! (Watch the video imbedded in the article, it's a great story that explains this process and how if benefits so many.) See, I give mine to my recipient, her husband then gives his to yet another recipient in need, and so on, and so on.

So, what happens now you might ask? Gee, I don't know. Kinda like I haven't really known too much throughout this entire process until it's actually happening. Maybe that's a good thing. I received another phone call today, shortly after the call from Marian (my transplant coordinator). Suzanne, a living donor transplant coordinator from UCLA, called to brief me on my recipient and to explain the next step in this process. Just as I predicted, more blood. I'm not going to have any left at this rate. They will be mailing me a blood test kit and yes, I again will need to get more blood drawn. Immediately after, I will schelp it over to FedEx and overnight it to California. I have a better idea, why don't I go to California and let them draw the blood there. I've never been and could use a little vacation right about now. Once they receive my ziploc 'o blood, they do another round of tests to confirm that I am indeed a match. Within two weeks I should be getting a call to confirm that I'm ok. Soon thereafter, the transplant coordinators schedule my surgery date. Then I need to put down the glass(es) of wine. Kidding. No I'm not. Yes I am.

Throughout this journey I have been doing lots of thinking. Too much, probably. I've been thinking about the 85,000+ people out there that are in need of a kidney and what their days/weeks/months/years are like on dialysis, their quality of life and the pain and discomfort they have to endure every day. I know that I have yet to have my surgery, and that there is going to be pain and discomfort in the near future for me. But it's temporary. It's a very small sacrifice that I have to make that will enable someone to live a full life again, and for longer. I'm reaching out to my audience to please take a moment to review some information about how to be a living kidney donor at the National Kidney Registry's website. As I've said before, I know that this is not for everyone, and I get that. I also know that for many others it's only a matter of educating yourself to feel confident and comfortable about taking steps to become a living kidney donor. I did - please follow me.

Until next time... I'm taking in the sounds, sights and flavors at Saratoga Race Track this weekend - and I can't wait!

matchmaker

I wanted to get to this about three days ago but I have been very busy with a freelance project, plus a girl has to sleep and eat, ya know! I mentioned in my last post about feeling so anxious to get the results from my exams at Weill-Cornell. I had anticipated approximately two weeks of waiting, biting my nails, tapping my fingers, twisting my hair... ok, you get the point. Anyhow, much to my surprise, I received a call on Thursday, July 15th, 2 DAYS AFTER MY TESTS!!! Can you believe it? Well, I can't.

I saw the 'missed call' on my phone and when I checked to see who it was, a rush of excitement mixed with concern filled my tummy. I hesitated for about 5 minutes before I returned the call to Marian. Over the past month I had put a lot of thought into how I might react should I get the unfortunate news that I would not be able to donate. I also decided that should it come to that, I must accept it for what it is and know that everything happens for a reason. However, in my heart I just knew that this was going to work out and that I would pass with flying colors. I did!

It was in the middle of the afternoon and I was at the office - I wanted to scream and shout but thought I might wake the dead that I work with. I can't describe the joy, relief and excitement that I felt. It was almost as if Ed McMahon rang my doorbell and greeted me with a handful of helium balloons and an envelope the size of a VW Bug. Ok not really, but close. The conversation was short and sweet and she told me that the next step was to release the results to the National Kidney Registry so that they could then find me a match.

Again, I was going to give this about 2 weeks, and then I was going to get on the horn and annoy everyone at the NKR to fill me in as to whether they had received the paperwork yet. They must have been having a slow day (or they want to get the Stimpson file off their desk), because I received an email on Wednesday, July 21st, from the NKR. Diane, the administrative coordinator at the Registry, shared the wonderful news with me that they would now begin to look for a match for me! WOO HOO! I certainly hope that they have better luck in finding me a match for my kidney than I have had trying to find a match for my lovelife. This could end up being a 4+ year quest if they encounter the challenges that I have in that department. Let's move on, shall we?

I'm so impressed with the flow of this process as of yet. I think we can all agree that when working with the medical field, speed is not exactly their strength. Not unless they want a payment of course. I am truly surprised at the seamless transition from one institution to the other. I know, they have done this before. I also know that they are experts in their field as well. I guess I just anticipated having to make numerous phone calls and send dozens of emails to get answers and progress reports from stage to stage. None of that has been necessary and thank God because I'm a woman on a mission and they don't wanna mess with me when I've gone too long without sugar. Oh, did I say that out loud? Anyhow, I'm so pleased, I'm grateful and I feel like a million bucks that the last two weeks have been so progressive for me.

Now I sit and wait, and wait, and wait. It's all good though because I am savoring my moments in my journey. I'm enjoying the process, the phone calls, the information, the new contacts I have made with other living donors, and most of all I have enjoyed the love and support that I am getting from all my friends and family. I want you all to know that your presence in my life has made me the person I am today, and I thank you for that.

Until next time... don't ever think it's a good idea to run a 5K when the humidity is at about 130% with the temp at around 80. Just a thought.