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!

gifts

I have a close friend that gets so anxious when she receives gifts. Makes her feel uncomfortable, as she puts it. I kinda share her feelings on this, but not on my birthday. Bring. It. On! The intention is to feel self-absorbed on your birthday, and it's the one day out of the year where it's perfectly acceptable for it to be "all about me." Right?

It's the other occasions when I feel a little weird about receiving a gift - ya know, like a wedding shower. I mean, think about it for a minute, really. Let me see if I got this right - I am choosing to make a union with a partner for life (or not - oops, did I say that out loud?) and social norms have dictated that people throw presents at me because of that. I know, it was a different economic climate 50 years ago and when couples chose to marry, they didn't have a pot to piss in because they were like 12 years old. Ok, not 12 but 18. Makes sense to me that they might need a set of sheets and a pot to boil some water in (for the potatoes and cabbage). I find it's not necessary that this tradition still exists and wish it would slowly fade away to be buried with the other ridiculous ceremonial practices of the generations past. Wedding gifts today are expected, pre-selected, ostentatious, and impractical.

The gifts that I just can't seem to get enough of are the ones without the tags and the gift receipt attached. I'm talking about the gifts you receive from the heart, the ones that require the labor of love, the hours of a day, the shoulder that's there for you to cry on and the laughter from the time spent with a close friend. The gifts I love most are those of experiences, not items:

• my mom cooking a wonderful dinner for me and baking her yummy desserts - more junk in my trunk
• my family helping me move - only 12 times
• my close friend spending time with me chatting and laughing over a bottle of wine - don't worry, my kidney told me it hates wine
• surprise Sunday adventures that fill me with happiness, planned by a special friend
• emails from old friends that have slipped away over the years
• a card in the mail
• a smile from a stranger - like from the cute guy at the gym that is half my age and doesn't know I exist

You get it, don't you? I know I do. These gifts are special because they are unconditional. They are not listed on an index card that Hallmark created as a suggestion to present to someone. They are presented with unconditional love, thoughtfulness and care. They are experiences, not items that can be purchased in a store. Although every girl can appreciate a little trinket, in a little box, with a little light blue logo that starts with a "T" and ends in an "s". I'm just sayin'. 

The best gift I feel that I have been given is my health. Mom, don't get your panties in a wad because I didn't say 'the green acrylic sweater you gave me for Christmas in 1985'. Sorry about that, but you'll get over it. I rarely have to think twice about an ailment I have. Why? Because I rarely have one. For those of you that are stricken with chronic pain, disease, or even a disability, I give you all the credit in the world. I can't imagine the struggle and discomfort that you must endure every day. I don't have any of those challenges in my life. I wake up, and outside of being stiff from an intense workout the day before, I feel fantastic! I am so fortunate, and blessed to have a body that is not impeded in any way. I love the feeling of getting a yearly physical and actually get excited to read the blood test results. Everything internal works just as it should - with the exception of when I consume a Jimbo combined with a Bomber's burrito too late at night. 

I really feel that God has given me this good health for a reason. My decision to donate my kidney is my unconditional gift to my recipient. I don't know who this will be, and I might not ever meet them. But that's ok, because I don't need to. This isn't about the response or reaction from the recipient. It's about my ability to pass something on to someone that will hopefully create a better life for them. I feel so fortunate to have such wonderful health that it's a no-brainer to not pay it forward. It's like a chain of goodness. I've been given this gift, now I want to give my gift. Hey, I have two of them anyway, right? That would be greedy of me to keep them both, plus I want to make room for more of my mom's desserts down there. I'm giving a gift that is very special to me that I know I appreciate and never take for granted. I know that there is someone out there that needs this, much more than I do. So, take my gift to you, and with it I hope that you can find even a small nugget of the good life that it has given me.

Until next time... word hard, but play harder - we only get one shot at this.

spreadin' the word

Once I received medical clearance from the hospital, I felt more confident in sharing my story with friends and family. I've graduated to a new stage in this process and it's becoming so much more of a reality to me now, and I'm going to assume this feeling will only continue to grow. I'm looking forward to the next step of receiving word that they have found a match for my kidney.

Surprisingly, my mother was extremely supportive of me when I expressed to her that I was going to donate my kidney. So much so, that she piped up about an interest in the opportunity to donate as well! Hey, mom... they don't take AARP kidneys - love ya anyway. My siblings were on board with me as well, and as I expected, my brother responded with his quick sarcasm and humor that I love so much about him. I'm thinking little sister immediately downed a margarita after our phone conversation, but shared her support for me, as I knew she would. They both had questions, and I directed them to the blog to catch up on the past several weeks of my journey. What would I do without my tribe - I have the best family in the world. Ok, second best - I really wanted to be one of the Huxtables.

Talking to my friends about this was a little bit of a different challenge. I know I've pretty much opened up about this to the world, via this blog, but there are still some close friends of mine that I have yet to sit down and talk to.

One friend in particular, I'll call her Jess (because she's on the lam), reacted pretty much the way I had thought she would. Jess is in the medical field, and let me tell you, she sees it all - ya know, the gooey and slimy stuff.  So, I knew that her opinion and thoughts on being a living kidney donor would reflect the feelings of someone that is very close to medicine, doctors, disease, and unfortunate outcomes. Her concerns are valid and real, and I respect her for being honest and upfront with me. See, that's why she's my friend and that's why I love her. I admire her for her honesty and her ability to not judge, but yet express her opinions with a tender and serious intent. To top it all off, she told me that should I ever need her kidney, she would charge me for it. I'm feelin' the love.

I have yet to spend time with yet another dear friend of mine, and I hope that I will soon get the opportunity to chat about this and let her know that it's not my intent to keep anything from her, but that she is so special to me that I feel the need to tell her face to face. Jeesh, like being a new mom is more important than time with me? Hello? Put baby in the corner and let's have some coffee talk! I'm kidding, folks. I love her and new little angel to death and am very much anticipating our chat.

For those of you that are considering being a kidney donor, I want to offer my opinion on how to comfortably share your news with those you love, and not be overwhelmed with anxiety and doubt. I decided from the beginning that regardless of what reaction and response I received from anyone, my decision was made up and I would not be backing down because of an unfavorable comment. The challenge for me was to be able to share my decision with everyone and not get too emotional from their response. I hesitated with my mom, and I did with Jess too, but it was because I love them so much. It's human nature to want to feel support when you need it the most, but the reality is that you don't always get it. You also don't always have the ability to convince someone to embrace something the same way that you have chosen to. Our friends are special to us because they are not exactly like us, so we have to understand that they won't always be able to agree with us.

Another bit of advice to any donor that is anticipating a challenging discussion with parents and friends - use the internet to connect to other living donors prior to these talks. Having conversations with donors about their experiences throughout their journey will open you up to a realm of situations that you might be faced with once you share your story. I am so thankful to Cara, Hope and Diane for sharing their advice on how to cope with my hesitation about telling everyone of my decision. I felt so much more prepared after talking with them.

So, I'm thinking that there are still going to be many others that I run into who will inquire about 'news' that they heard regarding me, and I will have to elaborate. And that's A-OK with me! I'm happy to share my journey with others. The more I can spread the word about the opportunity we all have to be a living kidney donor, the more successful my quest becomes. If through my journey I can enlighten just one person to be a donor, then I feel like I have made progress. It's kinda like that Breck commercial from the 70's... "she'll tell two friends, and they'll tell two friends, and so on, and so on, and so on..."

Until next time...  download the podcast of the Bob and Sheri Show - you will be amazed as to how these two people can bring laughter and meaning to your life!

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.

so happy

I received a call this afternoon from Weill-Cornell with wonderful news - I passed all my medical tests! I almost peed my pants when the coordinator told me, but I didn't, I shed a few tears of joy instead. I didn't expect to hear from them so soon, so when I saw the 'missed call' on my phone, from Marian (the coordinator), I wasn't sure what to expect when I listened to the voice mail. I returned the call to find that everything looks good and I have great kidney function! YIPPIE.

I didn't even have enough time to write a post on my big day there. So sit back and relax and I'm going to share with you my experience. What a great day it was - it far exceeded my expectations, with the exception of the crappy weather. I departed home at 5am on the dot and arrived at the hospital with only 15 minutes to spare for my first 9am appointment. I was so impressed with the fluidity of the appointments. I know I didn't have to wait more than 10 minutes between each one.

Appt. #1: I started with meeting Marian at 9am. She went over the basics of this process, I filled out some paperwork and she confirmed with me my itinerary for the day. Marian was very nice, informative and thorough.

Appt. #2: I met with a nurse and dumped off the 2 jugs of urine I had been schlepping around with me since daybreak. Ugh, what an awkward feeling walking around with a borrowed NASCAR cooler filled with iced-up urine. The nurse then proceeded to take 13, (yes, 13) vials of blood from me. I counted them. EW! I then was asked to pee yet once again and waited to see one of the kidney doctors.

Appt. #3: I met with a kidney doctor, and forgive me but I don't remember his name. Nice man, who asked me many questions about my health history, my motivations to become a donor, family history and some basic personal questions. He went over the basics of the surgery and filled me in on what might possibly be a minor setback with regards to a kidney infection I had about 18 years ago. He mentioned the possibility of scarring, but in the same breath told me I have great kidney funtion. The CT Scan would provide the results of that. He listened to my heart, tapped me here and there and I was done.

Appt. #4: I met with Samantha, the social worker. I again fill out more paperwork and we chatted for about 20 minutes or so about my desire to be a donor and I answered her questions about my personal life, medical history, etc. She too was kind and informative and I felt very comfortable sharing so much of myself with her.

Appt. #5: I still have not eaten, nor have I had a drink of anything since the night before. I feel a headache coming on and more than anything, I just want a drink of water. This appointment was for my EKG. I have never had an EKG. Honestly, it took her longer to put the sensors on my chest than it did for her to operate the instrument that provided the test results. No sooner did I have my shirt off than she told me to put it back on. I seriously don't think I was in there for more than 4-5 minutes. Love this!

Appt. #6: Now I'm getting really excited. Why? Because when I'm finished with this one, I'm going to eat my left arm. I am so hungry now and am very anxious for this next test. It's a CT-Scan. I didn't wait more than 5 minutes for this one as well. I actually felt a little weird because there were many people in this particular waiting room and I cut in front of each one them. Hey, they called my name - you don't have to tell me twice! I lay on a table and it slides into this x-ray type of device. I'm hooked up to an IV and am told that soon they will begin the transfer of the dye, through the IV, that enables the equipment to read the x-ray. She told me that I would feel like I peed my pants. Can we just get off the pee stuff for a while, please? Well, it did feel like I peed my pants. Ew! That exam was probably the longest, approximately 20 minutes or so, but not uncomfortable at all.

Appt. #7: Chest x-ray. Quick and painless! I finish, get dressed and inhale the Soy Joy bar(s) I had packed in my bag. I ate them so fast that I don't even remember what they tasted like.

At this point I have one more appointment scheduled for the day, but it's not until 5pm, and it's only 1:30! I call me niece and her boyfriend and ask them to come back to the hospital to meet me for lunch. They hustled back, in the downpour, and within 20 minutes they arrived soaked literally head to toe. I felt SO bad, and yet there was nothing I could do. We swam across the street to a deli and had a great salad and sat down for a while to catch up on the day's events. They walked me back to the hospital and were soon off to search for an H&M store to purchase some dry clothes. My heart was sad because I felt so bad for them in their discomfort.

I decided to visit the psychiatrist's office in which my 5:00 appt. was scheduled for, in hopes that I just might be able to squeeze in sooner. No such luck, but he was kind and told me to come back at 4:45. I went back downstairs and hung out in a nice, comfortable chair in the main lobby and read my Esquire. I dozed off for about 15 minutes but found that the many distractions prevented me from getting some serious Z's. At 4:00 I found a cafeteria that offered Starbucks and washed down yet another Soy Joy bar with some hi-test.

My view from the lobby of Weill-Cornell - all afternoon!

Appt. #8 Of all the appointments scheduled for the day, this next visit with the psychiatrist was really the only one that I felt slightly anxious about. When I know someone is examining my mind instead of my body, I get the heebie-jeebies. Dr. Loftus was so kind. What a great visit I had with him. We chatted for quite a while and although the conversation touched on many personal elements of my life, I felt completely comfortable with him. I was honest and felt like I learned more about the donor transplant process from him than I had with any others I had met earlier in the day. I truly enjoyed my time with him and it was the perfect experience for me to end my day of exams.

I don't know how I could have done it all without the companionship of my wonderful niece and her caring boyfriend. A special thanks goes out to Amber and Nick for being with me on what was to be such an important day for me. They were so flexible and supportive, offering their ears to listen to my updates, and providing me with a belly laugh at their sarcastic commentary. I love those two!

My niece Amber providing me with humor in the waiting room

I arrived back home in Albany at around 9:30. Long day, but a good long day. Information overload, lots of stimulus, lots of learning, and lots of thinking. I felt so good and relieved to have experienced so much in such a short period of time. I never dreamed I would be getting a phone call so quickly to let me know that all the poking and prodding paid off, big time!

I feel blessed today. I feel so fortunate that God has given me a body that has the ability to share something that is so precious to me, with another person that so desperately needs a slice of good health.

Until next time... take a break from your computer for a day, it will offer you some added time to share with a friend.