Monthly Archives: January 2011

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]