what a long, strange trip it’s been

D-Day (D for donation, of course) has finally arrived. With less than 24 hours until my surgery, I can’t help but reflect on this past year and all the places this journey has taken me. This last week in particular has been an emotional roller coaster, and unfortunately with the unexpected turn of events regarding my job, I never took the time to talk about what’s been happening donation-wise during this, the most important week of them all:

Monday was the day that completely turned my life upside down – the day I was unexpectedly let go from my job. The motivation is still anybody’s guess, though I have my suspicions, but I do know that it was a direct result of my need for time off for this surgery (for more on that, please see this post). While I know that I was wronged in so many ways and completely undeserving of the treatment I received, I would be lying if I said I still wasn’t upset by it. To fire a loyal, hardworking, devoted employee is one thing, but in my opinion, it takes a certain kind of boss and a certain type of company to let someone go one week before a major surgery, and that is most definitely not the kind of company or boss I want to invest my time and energy into. Being fired added a whole new level of stress to an already stressful week, and threatened to taint an event I had been so excitedly anticipating for a year. Not to mention, it’s pretty difficult to actively seek out a job, make calls, and attend interviews when you’re in recovery. I’d like to give my ex-bosses the benefit of the doubt and have faith that there must have been some force beyond their control that led them to believe firing me last Monday was the best course of action. I can’t say I’m quite there yet, but I’m trying. And although I will never forget what they did to me, I can work my hardest to forgive. I’m not there yet either, but I can honestly say that though the timing was far from perfect (does perfect timing exist in this situation?), firing me was the best thing they could have ever done. Already, doors have opened to me that I never would have had the opportunity to explore under their employment, and though I’m still nervous about what will happen, I’m confident that I will quickly move on to bigger and better things.

Tuesday was a welcomed distraction from Monday’s events – pre-op testing at New York-Presbyterian/Weill Cornell. Basically, these tests provide an opportunity for the hospital to definitively confirm that my intended recipient and I are still, indeed, a perfect match, as well as make sure that my body is still physically ready for and capable of handling the surgery. I was at the hospital for about 5 hours, during which time I had about 7 more vials of blood taken and underwent several more blood tests, another chest x-ray and EKG, met with my coordinator, a few nurses, and my social worker, and finally had a sit-down with my surgeon, Dr. Joseph Del Pizzo. Dr. Del Pizzo is hands down one of the best surgeons in his field. He’s completed more nephrectomies than almost any other surgeon in the world, and was even a part of the first ever laparoscopic nephrectomy (which is what I’ll be having). When he’s not performing kidney transplants, he’s traveling the globe teaching other surgeons how to perform them. I could not be in better hands – literally. Dr. Del Pizzo explained the whole process and also talked to me about a 100-person study (of which I agreed to take part). There are two ways to have this surgery done laparoscopically – the more traditional, 4-incision procedure, or the newer, single-incision procedure. By agreeing to be part of this study, a computer randomly decides which method I will undergo and for the next 5 years I will answer a series of questions about my recovery, scarring, pain, etc. The goal is to determine which method, if either, results in a quicker recovery (so far, beyond the cosmetics, they see little difference between the two). There’s no direct benefit to me for being part of the study, but it will help future donors as well as the entire living donation program and that’s reason enough for me.

The rest of the week and weekend were fairly uneventful in terms of the surgery. Dr. Del Pizzo called me on Wednesday to let me know that the computer selected the single-incision (via the belly button) surgery for me, and noted that in my physical condition, either method would work equally well as the other. The single-incision procedure perhaps looks a bit prettier, but since I have no plans of being a swimsuit model in the near future, that was of very little concern. Other than that, I spent most of the remainder of the week talking to some mentors in the kidney community, applying to jobs, reaching into my network of wonderful and supportive family, friends, and former colleagues, and prepping my apartment and my body for surgery.

Today, however, has been interesting. For starters, I’m incredibly anxious and excited for tomorrow morning. I have to report to the hospital at 5:45 am and I just know I will not be getting any sleep prior to that. I’ve found it so hard to focus on anything all day, so I’ve been passing my time cleaning, running errands, and catching up on emails and phone calls. Oddly enough, though, I’m not nervous in the least. In fact, I’m surprisingly calm and peaceful (in spite of my excitement), and I honestly feel like tomorrow is something I was meant to do – that everything that has happened in my life so far has been leading me to this very moment.

My inability to focus aside, the hardest part about today has got to be the fact that I can no longer eat solid foods. I had a good breakfast, followed by a light lunch of yogurt with fruit and granola at 11:45 am, and as of noon, was banned from all solid foods until after surgery – my next meal will likely be at some point on Wednesday. I can drink all the clear liquids I want until midnight, which helps a bit, but for a ‘grazer’ like me, who eats several small meals every few hours, eating nothing for nearly 8 hours at this point is killing me. And on top of that, I had to drink half of a 10 oz. bottle of magnesium citrate at 3 pm to cleanse my bowels before surgery. Let’s just say my stomach is doing a lot of talking, making me exceptionally nervous for when it gets to walking…

I plan to spend the rest of tonight relaxing, reading, packing some things for my hospital stay (which will be 1-2 nights long), and maybe even writing a letter to my recipient. I still don’t know if she wants to meet me – we wouldn’t be allowed to meet until after the surgery anyway – but I wanted to let her know that even if she doesn’t want to, I’m so glad that I’m able to do this for her and her family. I haven’t yet decided if I will give her this letter – I worry that it will make her feel obligated to reach out to me, which I certainly wouldn’t want to do – but I’m sure the right choice for me will become evident as the night goes on.

I still can’t believe that tomorrow is ‘the’ day. Like so many things in life, while I was in the midst of it all, I felt like it was taking forever, but now that the day has arrived, I feel as though it all happened so quickly. I did my very best to try to enjoy each and every step, and I think I did a good job of doing so. I’ve been through a lot since I decided to donate my kidney – I was hired and fired, adopted a new puppy who is the love of my life (well, ok, after my boyfriend and right up there with my two cats), went skydiving for the first time, enjoyed my very first tropical island vacation, met so many incredibly inspiring people, and most importantly, I learned so much about my support system, my family and loved ones, and myself. I’ve encountered many, many obstacles along this journey – some that would have, rightfully so, knocked many people off course. But I am, for better or for worse, a very determined, headstrong (some might say ‘stubborn’) person, and when I make a decision and set a goal, there is simply no deterring me.

However, no matter how strong-willed I believe I am, I know there will be moments in my life when it will be easier to quit. Easier to change course and take the well-traveled road. Easier to come up with excuses for why I can’t rather than reasons for why I can. And when that time comes, I can look back on this experience – the people I’ve met, the stories I’ve heard – and find the inspiration and the strength to pull through. Because like I’ve said so many times before, there is always someone fighting a tougher battle. Kidney patients are living, breathing proof that mental fortitude and the will to power on is stronger than almost any adversary. They have shown me that there is no greater force than a positive attitude, and that even when there is simply no more fight left to fight, the brave face that day with courage and grace. And sometimes, that’s all we can ask for.

Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’  [Mary Anne Radmacher]


if yesterday hadn’t happened

If yesterday hadn’t happened, I’d be sitting down tonight to write about all the wonderful things that have happened in my life lately, all the positive news I’ve received and new information I’ve learned.

If yesterday hadn’t happened, I’d be excitedly sharing the recently confirmed date of my surgery – March 8th – exactly one week from today. I’d tell you that I learned a little bit of information about my recipient – that she is a 56-year-old woman from New Jersey, just like my mom, which makes this whole thing hit a bit closer to home. I’d write all about the ‘cluster’ that I’ve set off, the four surgeries including mine that will all occur next Tuesday, saving two lives in the process; how several more ‘clusters’ will occur throughout the chain I’ve started to save a still undetermined, but potentially infinite, number of lives, spanning months, even years.

If yesterday hadn’t happened, I’d gush about the exciting news that I was contacted by Marina Khidekel, articles editor at Glamour magazine, and Lexi Petronis, health blogger on Glamour.com, who reached out to me to conduct an interview before, and possibly after, my surgery to talk about my blog and, more importantly, the concept of living donor chains. I’d express how incredibly grateful I am to these two women for caring about my story and my blog, and for taking the time to shed light on such an amazing, but little-known cause. I’d also smile as I typed out the link for you to read this wonderful piece by Lexi at http://www.glamour.com/health-fitness/blogs/vitamin-g/2011/03/i-started-a-kidney-donation-ch.html.

But yesterday did happen. And yesterday rocked my world as I knew it. Yesterday, I was fired.

Though I’m still in shock and cannot yet entirely grasp what happened, I do know that the chain of events that transpired leading up to the termination of my employment did so because of my need for time off to go through with, and recover from, this kidney transplant surgery. Although, to my coworkers’ and one of my bosses’ testimonials, I had kept my entire office up to date along every step of this journey (beginning last March) and had, on several occasions, discussed and agreed upon the logistical details with my bosses months ahead of time, all of a sudden as the surgery date approached, one of my superiors decided that he felt my week-long absence for the surgery would pose a problem in the office. Just 8 days before my scheduled surgery, my boss sat me down and told me that despite my aptitude, despite my very recent promotion to Editorial Lead, and despite my exceptional feedback from coworkers and clients, this relationship was ‘no longer working out.’ Shock and confusion, a deep sense of betrayal, and a wave of panic flooded over me as I walked back to my desk, packed my belongings and, humiliated, left the midtown Manhattan office for the very last time. I cried the entire way home and didn’t stop until the wee hours of the morning.

I still don’t understand what happened yesterday. I can confidently say that in all my years of employment, in every job I’ve ever held, I’ve never had a boss who wasn’t thrilled with my work, my work ethic, and my passion for, and dedication to, my job. But I’ve learned that life isn’t fair; that sometimes even your best isn’t good enough for some people; that job security is a great idea, but a lousy thing to depend on; that being a good person doesn’t mean only good things will happen to you; and that sometimes even things done with the best intentions will go misunderstood by some.

As upset as I was, and still am, I know I will be ok. I know I’ll find another job, that my career will continue to blossom, and that I’ll end up in a place where my work and my values are respected and appreciated. I’m not the first, nor the last, person to be fired from their job – I’ve been through worse in my life and am better for it. And though my whole world was changed in the blink of an eye yesterday, one thing remained as unshakable as ever – my desire to go through with this surgery.

While I know things will be rough – financially, emotionally, mentally – until I find a new job, I’m confident that this, too, is only a temporary setback in my journey. And I will not let this deter me from doing what makes me happy, from what I feel is right. Because at the end of the day, no matter how devastating the loss of a job can be, it pales in comparison to what thousands are going through every day as they wait for the gift of life. I won’t lie and say that at no point did I feel bad for myself or that I was being targeted – I did. I won’t say that I never thought of myself and only myself over the last 24 hours – I did that too. And I won’t tell you that I wasn’t devastated, bewildered, and utterly indignant – I was. I still am. But my situation will improve. My life will get back on track. I have the power to change things. Dialysis patients do not. They cannot simply will themselves to health. They cannot wish their kidney function back to normal. They cannot send out applications and emails, set up interviews, and pound the pavement for a new kidney. Yet it is those very same people – those who are the most powerless over their situation – who have shown the most grace, the most bravery and determination, the most resilience. If they can courageously rise up after being so brutally knocked down, I can certainly recover from a small stumble. And I can lend them a hand on my way back up.

And in the meantime… if anyone needs a writer, editor, or project manager, you know where to look.

 

It helps, I think, to consider ourselves on a very long journey: the main thing is to keep the faith, to endure, to help each other when we stumble or tire, to weep and press on.  [Mary Richards]


i am one

This past Friday I found out that my crossmatch blood test results came back negative, meaning that my intended recipient and I are a match and we can move forward with surgery! I also learned that there are two other crossmatch tests going on as we speak, meaning I will be helping two other people receive kidneys, and the chain could potentially grow even longer. This news is what I’ve been waiting to hear since I began this journey, months and months ago; ‘elated’ and ’emotional’ simply do not do my feelings justice. After a flurry of phone calls, text messages, and emails, however, the excitement subsided just enough to let another emotion quietly creep in: guilt.

As I’ve mentioned before, becoming a living donor has opened up to me a whole new network of friends and mentors. I’ve met some of the strongest, kindest, and most inspirational people through this experience, and each one of them has touched my life in some way or another. But the Reynolds family of Stuart, Florida may have left the most lasting impression of all:

The Reynolds family runs a wonderful Facebook group called the Kidney Connection. As a member of the group, I had posted a link to my blog on their page and kept everyone up to date on the latest news as I moved along in the donation process. Jane Reynolds, the mother of the family, messaged me one day to express how deeply touched she was while reading my blog and by my decision to become an altruistic donor. It turns out, as she explained, that her daughter, 24-year-old Abby, donated her kidney to her father – Jane’s husband – last summer, saving him from a life of painful and debilitating dialysis. Jane told me that I should reach out and talk to Abby if I had any questions, and within a day or so, Abby and I also became friends. I found comfort in the fact that Abby was a female, only two years younger than me, that had gone through this same surgery and came back from it stronger than ever – she’s already back to running and enjoying life. I felt instantly connected with this gregarious duo, but it wasn’t until a couple of days later that I would truly come to appreciate their strength and courage.

After some back and forth with Jane and, eventually, her husband, Michael (who also reached out to me to express his feelings about what I’m doing), I learned that ultimately this close-knit family did not get the happy ending they had hoped for. The initial transplant went perfectly – Abby’s kidney was young and healthy and Michael’s body did not reject it. However, after only a brief period of respite from dialysis, Michael found himself once again in the hospital for a procedure that should have alleviated a minor issue with the transplant. Instead, it ended up perforating and ultimately killing his new kidney. Devastated and defeated by this rare outcome, the family was knocked back to square one.

Understandably, this would make any sane person crazy with rage and desperation. The Reynolds family, however, had their period of mourning and anger, and then decided to move on. They know better than anyone that life doesn’t always unfold how we dream it will, and that the best remedy is a positive attitude and forward momentum. Abby, even now, has never regretted her decision to donate her kidney, and Michael still calls her his ‘hero’. This family has been through hell and back, but from the love and energy they exude, you would never know it. Their positivity, courage, and selflessness continue to astound and inspire me. It is people like them who reinforce my decision to become a kidney donor.

As I was getting to know the Reynolds family, someone out there was in the process of being tested as a potential recipient of my kidney. Only a few days before hearing the results of those tests, I found out that Michael Reynolds’ blood type is A-, just like me. While this doesn’t necessarily mean we’d be a match, it’s a great start. I told Jane that my first obligation was to my potential recipient (about whom I still know nothing except that he or she is ‘local’), but if that should fall through, I would love to discuss the possibility of being tested with Michael. While I knew I was still doing a wonderful thing for a stranger out there, I was plagued by the idea that here was this family with this horrible story that I could potentially help and I wasn’t able to. Abby and her sister are both close to me in age, so I found myself constantly imagining myself in their shoes. After days of tormenting myself, I decided that it was out of my hands for the moment, and I would deal with it when I learned the results of my crossmatch testing. I’m a firm believer that everything happens for a reason, so I put my faith in the test.

When I got the call with my results, therefore, my excitement was laced with a stinging guilt that I had, in some way, turned my back on the Reynolds family. Upon hearing the news, in true Reynolds family fashion, Jane sent me a message saying that although she wished we had connected sooner, she was so happy for me and that ‘the world needs more people like [me]’. She also reminded me how much I will be changing – saving – someone’s life. Here was a woman, going through a struggle I cannot even begin to comprehend, and she’s comforting me. The epitome of selflessness.

In the few days that have since passed, I’ve come to accept that I can only do so much. I would love to save the world – every person in need, every animal living in fear, every forest that is destroyed – but I can’t. However, this experience has brought me to the realization that donating a kidney is only the beginning of my crusade. There are still thousands upon thousands of suffering people on the cadaver kidney waiting list. And, as I will soon be down to my last kidney, I will not be able to help every family I meet, but I can spread the word about living donation so that someone else might also be inspired to try.

I believe we all have a higher purpose in life that goes beyond our nine-to-five. We are not alone in this world, and for every personal battle we fight there is someone out there, like Michael Reynolds, who is fighting an even more formidable opponent. Think about what you have in your life. Not the material things – the clothes, the houses, the cars – but the intangibles. The friends who make us laugh. The family that cares for us. The significant others who make us whole. The pets that keep us young. And then look beyond that, into yourself. If you’ve got your health and well-being, you’ve got so much more than a lot of people, and you just might be able to share that with someone who needs it. Whether you can donate your kidney, your blood, or even your time and assistance, there is something we all can do for others. Sometimes, it just takes the courage of one person – or one family – to realize it.

 

I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do.  [Edward Everett Hale]


live slow

After spending this past week in paradise, a.k.a. St. Lucia, on warm, sunny beaches, in crystal clear waters, with nothing but the sun on my face and a beautiful, tropical breeze at my back, I’ve come to realize quite a few things about myself. With no cell phone service and very little internet access, my boyfriend and I were able, for the first time since, well, ever, to completely disconnect from the outside world. We had nothing to stress over, no responsibilities to be slave to, no work to think about, people to please, questions to answer, or schedules to live by. For seven glorious days and nights, we simply existed as the locals do – waking up without an alarm, eating when we’re hungry, doing anything we pleased or nothing at all if that was more to our liking. It’s amazing what something like that does for your mind, body, and soul. I feel rested, recharged, and refreshed – ready to face life again, though I wish I could have brought some St. Lucia weather to New Jersey!

St. Lucians absolutely embrace and live by their motto, ‘Live Slow’. To them, life is meant to be enjoyed, soaked up to the very last drop. The inhabitants of this lush, tropical island are – as a direct result, I believe – some of the happiest, most laid back people I’ve ever met. While a large majority of them live severely impoverished lives, they don’t seem to worry about it all that much. As long as they have clothes on their backs (which they’ve likely made), food on their tables (which they’ve grown themselves), and the ocean and sun outside their doors, they’ve got all they need as far as they’re concerned. What a stark, dramatic contrast to the people of America. As a whole, we are a greedy, self-serving nation, always on the lookout to acquire more, better, faster. The average American is leaps and bound, wealth-wise, ahead of the average St. Lucian, but when it comes to happiness and satisfaction, I’m afraid we pale in comparison.

As I sat on the beach, watching the comings and goings of the locals and, more often, the ‘liming’ or ‘slipping’ they do all day (their words for ‘hanging out’), I got to do a lot of thinking and reflecting. While I don’t know that I could be fully satisfied with a lifestyle as slow as theirs (though I wouldn’t exactly say no to a few months living as the St. Lucians do!), there was a lot to learn from these people: to take life one day, one hour, one minute at a time; to worry less and enjoy more; to embrace and relish in the everyday beauties in my life even if they don’t include a gorgeous paradise outside my window. Above all, though, the residents of St. Lucia have mastered one thing we all could use a bit more of: appreciation. While it’s certainly harder to appreciate things when the world around us is frozen, cold, and unrelenting, a deeper look reveals that there are countless things for which we should be thankful. Unwavering support from family. Unending laughs with friends. Unquestioning acceptance and love from significant others. Unconditional love and loyalty from pets. A roof over our heads, food in our bellies, and clean water at our fingertips. Our health, our voice, our ability to pursue any life we so choose. The list goes on and on.

Among other things, this much-needed break from life reaffirmed my desire to donate my kidney. Along with the support I’ve received, there have been the questions, the doubts, and the attempts to change my mind. To say I’m immune to these would be a lie. To say I’ve never had even the slightest shadow of a doubt bubble up would also be a lie. But despite it all, I’ve always felt deep down that I was meant to do this, and this trip rekindled that feeling and gave me the strength I need to power on in the face of adversity, suspicion, and coercing. And it couldn’t have happened at a better time…

Upon my return to the States and my reconnecting to the cellular world, I received a message alerting me that a possible match to receive my kidney had been located (and someone local, to boot!); crossmatch blood tests this upcoming Monday morning will confirm this and, if it turns out to be a false start, the NKR will get right back to looking for another possible match. Yet, if all goes well, the next step will be to set a date for surgery – THE surgery. Months and months of research, tests, trips to doctors, arguments, celebration, and endless waiting will finally come to fruition. And, most importantly, lives will be saved, improved, and forever changed. My recipient and the rest of the recipients in the chain, as well as their families, friends, and loved ones, will get a second chance: at life, at health, and at feeling (and appreciating) the sun on their faces and the wind at their backs.

A beautiful St. Lucian sunset, as photographed by my incredibly talented boyfriend.

 

 

The roots of all goodness lie in the soil of appreciation for goodness.  [Dalai Lama]


the green light!

Yesterday I received the call that I’ve been waiting to get for almost a year now – the call confirming that I PASSED all of my countless tests and am officially in the living kidney donor pool! Woo hoo!!! Even as I write this, I’m fighting back tears. For anyone who has read this blog or spoken to me about this procedure knows that it’s been all I could think about since last February, and though I’ve never won the lottery, I can only imagine that it must feel something like I feel right now. Let me begin at, well, the beginning…

Monday was my marathon day of testing at NYP/WC and it was truly exhausting. Everyone warned me about how long and unending the day would be, the headaches and hunger pains I would get from fasting, the over-stimulation from all the information I’d be taking in and tests I’d have performed on me. And everyone was right. By 7:15am I was in my parents’ car driving through the Holland Tunnel, making my way uptown and eastbound. We arrived at the hospital around 8:15 (not bad for rush hour traffic in the city), parked, and headed inside. The hospital itself, to which I had never been before, was surprisingly nice, and everyone we met along the way was extremely kind and helpful. The Transplant Center was large, open, and airy, lined with couches, plants, and even computers for visitors to pass the time. I waited maybe 15 minutes before I was called in to begin my day, and once it started, it did not stop. Here’s a brief summary of each of my visits and what I learned:

  • First I met with Marian Charlton, coordinator at the Kidney/Pancreas Transplant Program at The Rogosin Institute. Marian was an absolute delight to speak with. She sat both me and my mom down and explained to us what we could expect throughout the day, the surgical procedure itself, risks associated with it, and the typical recovery process. She also took the time to answer all the questions my mom and I came armed with (and there were more than a few of those) and gave us great information – some of which was news to me, even with all of my research over the past year. One thing she explained which I hadn’t known was that immediately after the procedure, donors are left with only 50% of the kidney function they had before (which I was aware of), and it only goes up to 80% within three months following surgery (20% requires dialysis). This does not mean that my one remaining kidney only functions at 80% of its potential – my remaining kidney will function at 100% but even so, my total kidney function will only be at 80% of what it was prior to surgery.
  • My next appointment was with Dr. David Serur who is the nephrologist and Medical Director of the Kidney/Pancreas Transplant Program at The Rogosin Institute. This was a brief, but comforting meeting. Dr. Serur took my vitals and talked to me again about the risks of the procedure, but then explained to me the credentials of the program at Weill Cornell. He explained that the doctor who will likely be my surgeon, Dr. Del Pizzo, travels around the world teaching other surgeons how to perform laparoscopic nephrectomies. (A quick Google search later that night showed that Dr. Del Pizzo is highly respected in the field and has been repeatedly voted one of the top doctors in the country). Music to my ears.
  • I was then called in to see a nurse with whom I was finally able to drop off my 24-hour urine collection (yup, I’d been hauling that puppy around all morning). She had me provide a fresh urine sample and then weighed and measured me, took my blood pressure, and proceeded to take 16 vials of blood from my poor arm. I commented on how much blood that was to give, and she noted that recipients typically have to give 17-30 vials. No rest for the weary, I suppose!
  • After seeing the nurse, I was ushered over to see the social worker, Ilana Silver. Ilana’s sole purpose in this journey is to look out for me, and only me. One of the most comforting things that was reiterated to me throughout the day was that this entire team was dedicated to donors only – they have no dealings whatsoever with the recipients – so there is no possibility of conflict of interest, pressuring on either side, etc. Ilana and the entire team will be with me from here on out making sure that everything that is done now, during the surgery, and well after, is with my best interest in mind. After explaining this, she went through all the risks of the surgery in greater detail, talked about any possible complications, and explained a bit more about how I would feel directly after the procedure. During the surgery, she explained, gas is pumped into my body to spread out my organs, thus making it easier for the surgeon to maneuver around. Once they close me back up, that gas is still there and has to work itself out (use your imagination). However, as Ilana explained, a common complaint is brief, but highly uncomfortable pains in random areas in the body – my shoulder, back, leg – as a result of air bubbles becoming lodged there. Not pleasant, but absolutely bearable, especially in comparison to the pain endured by kidney disease patients all over the world! At the end of it all, I read through and signed a few packets and forms explaining the privacy issues regarding, and the release of, my test results. I would be tested for a huge range of ailments – indicators of any future problems, heart disease, diabetes, cancer, even HIV (This test always makes me nervous for some inexplicable reason. It’s like when you’re driving, obeying all the traffic laws, but still get that uneasiness when you pass a cop.). If nothing else, this day of tests would either assure me of my good health or warn me of any potential problems in the future – none of which I may have otherwise known about until it was too late.
  • My next appointments were for an EKG, a chest x-ray, a CT of my pelvis, and a CTA of my abdomen. These, like the rest of the day, went off without even the slightest hiccup. My EKG took all of 5 minutes and was performed by a smallish, older woman who gave me a bottle of Purell and a ‘God bless you’ upon my departure. The chest x-ray also took only about 5 minutes and then I was quickly ushered over to get my CAT scans. This was by far the easiest appointment – all I had to do was change into a warm, comfy gown and lay down for about 20 minutes while the nurses and machine did all the work – no problem! The nurse that hooked me up to the IV explained to me that right before my fourth scan, an automated IV drip would pump a substance into my body that would allow doctors to trace its route through my system. She warned that I would feel pressure in my arm where the IV was inserted, followed by a metallic taste in the back of my mouth and a warm sensation throughout my whole body – including, as she said, my ‘private parts’, which would make me feel like I peed my pants. I’d been told about this several times by others who have gone through this process, but despite all the forewarning, I still panicked briefly when I felt the odd sensation tingle through me from limb to limb. As the nurse unhooked me, she asked who my recipient was. I told her I didn’t know, that I was donating altruistically, and she smiled and said the kindest thing I’ve ever been told: ‘It’s people like you that remind me that there is still some goodness left in the world.’ What an amazing thing to say and to hear.
  • After all my medical tests were done, it was nearly 2pm and I finally was able to eat and drink. My parents and I went to a nearby diner, inhaled some delicious sandwiches, and then spent a few hours gallivanting around the city.
  • At 6pm, I returned to the hospital (45 minutes early) for my last appointment with Dr. Loftus, the team psychiatrist. Of all the appointments I had, I was most nervous about this one. For some reason, I feel much more comfortable with people poking around my body than my mind. I was afraid that no matter how truthful I was with my answers, that the psychiatrist would either think I was lying, crazy, or unsuitable to donate. In his defense, Dr. Loftus was extremely warm and amiable, and I felt as comfortable as I possibly could opening up to a complete stranger. He asked me everything and anything – my motivation for becoming a donor, how I would feel if I found out that donation failed, this ins and outs of my childhood, how I felt about my parents’ divorce, what my relationship with my boyfriend was like, how I liked my job, etc., etc., etc. About 40 minutes later – by far the longest appointment of the day – I was a free woman.

The day was certainly long, but also wonderful in many ways. My mom, who was a total wreck about all of this, had a few of her fears calmed a bit. I had every question I could ever think of answered. And both my parents got to be there with me during this life-changing adventure. On top of it all, we ran into Tracy Morgan in the elevator leaving the Transplant Center! Tracy Morgan has recently received a kidney transplant and I had just told my boyfriend about an article I read about him the previous week. And then there he was, right in front of me, holding the elevator door open! Unfortunately, I didn’t talk to him – I felt awkward bothering him while he was busy with medical issues – but it was still fun to be in the elevator with him and see, with my own eyes, the life-saving miracle of kidney donation. All in all, it was a good day. And, with my excellent news that all my test results were, as Marian said, ‘absolutely perfect’, it’s official. I will be a live kidney donor. This is, without a doubt, an amazing start to a year I’m sure to remember.

 

The true meaning of life is to plant trees, under whose shade you do not expect to sit.  [Nelson Henderson]


here we go!

A lot has happened in the last 24 hours, and it’s only now that this whole process is starting to feel real, like it might actually happen instead of being this obscure event that may take place in the future at some point. First and foremost, my mom and stepfather did come over last night and I was able to finally come out with my big secret. To say it went badly would be a gross understatement. My mom would barely look at or talk to me when she came in, and things quickly went from bad to worse.

While my mom commends what I want to do, she doesn’t understand why I would voluntarily have an organ removed from my body. She’s worried and frustrated and angry that of all the ways I could help people, this is what I chose. She threw an endless list of hypotheticals my way, none of which could be quelled with any sort of realistic explanation. At first, I was aggravated with the whole reaction. I felt like it was dramatic, overly emotional, and totally irrational, and that no one can live their life according to a bunch of what-ifs.

But the more I thought about it, the more I understood her perspective. My mom comes from a generation of people who avoid surgery at all costs, who do not willingly undergo it with no personal health benefit. Science has come a long way from my mom’s day, and where I see minimal risk, she sees endless opportunities for trouble.

I also began to more clearly see where her over-the-top reaction was coming from: love. Something I got from my mother is my all-or-nothing attitude. When we do something, we do it big and we do it all the way. My mom loves her family, especially her children, in an all-consuming, every-fiber-of-her-being way, and while that often leads her to needlessly fret over every little thing, it also makes her the amazing mother she is. To my mom, worry equals love, and if we use that standard of measurement, my mom loves like no other.

Ultimately, my mom made one thing clear: she does not give me her blessing, nor will she be happy about this process. Not now, not during, and not after. She does, however, lend me her full support and will be there for me and with me every step of the way. My mom may frustrate me with her worrying, but no matter what her opinion, she has always stood by her family. And while I would love her approval, I know I couldn’t do it without her support, so I’m happy to have that at the very least.

Also within the last 24 hours, I received confirmation of my appointment at New York-Presbyterian/Weill Cornell for this upcoming Monday! I am so excited I can barely focus on anything else! And, to make it even better, both my mom and stepfather have agreed to accompany me on my big day of tests, both to show their solidarity and to keep me sane during the hours of sitting around being poked and prodded.

The day before my testing, Sunday, I have to do yet another 24-hour urine collection (I’m a real pro at this point) and then keep that sucker on ice right up until my first appointment Monday morning. I also have to fast from midnight Sunday until only-God-knows when on Monday (I love food and I love lots and lots of water, so fasting is never fun). Here’s what my day will look like:

  1. Arrive 9am – meet with Julie (my coordinator) and turn in urine sample to someone named Jackie
  2. M.D. visit
  3. Blood tests
  4. Meet with social worker Ilana Silver
  5. EKG
  6. Chest X-ray
  7. CT of pelvis and CTA of abdomen
  8. Finally eat everything in sight (should be around 1:30pm – more than 13 hours of no food or drink!)
  9. Long break – catch up on work, blog, sleep, etc.
  10. Head back at 6:45pm to meet with Dr. Todd Loftus for a psychiatric evaluation (I bet a lot of people, including me, would like to know the results of this one.)

All in all, my testing should end around 7:30pm. Talk about a long day! But I’m super excited and extremely anxious and cannot wait to get there and get my results shortly thereafter. I’ve heard that things happen pretty quickly from this point on, so I’m trying my very best to enjoy every second of the journey. I feel as though yesterday marked the day it truly began, the day it all became real, and it’ll be over before I know it, I’m sure. Until then, I’ll focus on my upcoming 26th birthday (January 23rd) and vacation to St. Lucia (woo hoo!) and be thankful every single day that I’ve been granted this amazing opportunity – and an even more amazing support system to share it with.

 

‘Children in a family are like flowers in a bouquet: there’s always one determined to face in an opposite direction from the way the arranger desires.’  [Marcelene Cox]


the best laid plans…

As usual, the holidays this year sped by in a twinkly, ribbony, calorie-filled blur. Weeks and weeks of preparation came and went in the blink of an eye, leaving me with the post-Christmas blues and a few extra pounds around the middle. As anyone who knows me at all can tell you, I absolutely live for holidays. My countdowns start absurdly early and my excitement grows like that of a 7 year old. But this holiday season was both special and trying for me. Special in that, in the light of my new kidney donor perspective, I’ve come to appreciate the closeness of my family so much more than ever before. I would do anything to ensure the health and happiness of any one of my relatives, and I know they wouldn’t hesitate to do the same for me. That’s why I feel a unique obligation to be for another family what I hope someone would be for mine God forbid one of my relatives were to fall seriously ill and I couldn’t help them. But Christmas this year was also trying because as I was surrounded by all these people with whom I share all the good and the bad in my life, I had a secret to keep – that I will be donating my kidney to a stranger. Of all the secrets I’ve had to hide, this was one of the hardest.

However, this secret, which I held so tightly until just the right moment, is a secret no more, and not in the least by my choice. This afternoon I received a call from Julie, the transplant coordinator at New York-Presbyterian/Weill Cornell Hospital, the center at which I will be having my surgery if, no, when I pass my final day of testing. She received my paperwork from NKR and wants to set up my big day of testing for this upcoming Monday (still pending, but fingers crossed!)! I was so excited and quickly checked with my bosses to make sure I could take the day off, and because they’re incredibly understanding and supportive, they both agreed without hesitation. I then called my stepfather to let him know about the testing but, unknowingly, he was with my mother who overheard our suspicious conversation and demanded to know what’s going on. Now, for those who have had the privilege of meeting my mom, it is immediately apparent that she is one of the sweetest, most caring and compassionate people on the planet. But if she for one second thinks something is wrong with one of her children and you know about it, boy, do I feel bad for you. After only a few minutes of unrelenting pressure, my stepfather, God bless his soul, caved, and told my mom that I needed to discuss something with her over dinner tonight. A few more minutes of intimidation and the cat was out of the bag, dinner plans were cancelled, and my mom was out in the car, crying (us Italians have quite a flair for the dramatic). This was not quite unfolding according to my plan – sitting her down to dinner at my apartment and presenting her – calmly and quietly – with a stack of information, links and videos, and a level-headed case about the safety of, and overwhelming need for, kidney donation. Well, you know what they say about the best laid plans of mice and men…

So here I sit, wondering if my parents will show up at my house for dinner tonight so we can have a rational discussion, hoping and praying that I can have my mom’s full support and blessing on this journey, but willing to push on even if it is on my own (though it’s not how I would want it). I know my mom means well – she worries because she cares – but I can only hope she meets me halfway on this one. I want her so badly to see what this really is – a selfless act and, really, a testament to the way she raised me: to be giving, to be honest, and to help those in need whenever and however possible. Until then, I will continue to appreciate my family (dramatics and all), my friends, my health, and my ability to give the one gift that keeps giving with each rising sun – the gift of another day.

 

‘As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them.’  [John Fitzgerald Kennedy]