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]


8 responses to “the green light!

  • Teri Navickas

    Yay!! Hurray!!! You have been in my thoughts and prayers. You actually, from my retrospective view, have crossed the most difficult part of your journey. The pain from the gas is pretty lousy, but walking, walking, walking will improve that quickly. I have the luxury (and joy) of seeing the results of my donation every day- my husband went Nordic skiing last week for the first time in four years. You are doing a wonderful, selfless, joyous thing for your recipient; and you will grow exponentially as a result. Congratulations, and keep me posted!

    • melissaarlio

      !!!! I’m SO excited!!!! I’ve heard the gas pain can get pretty unbearable at points, but small price to pay, I feel! How wonderful it is that you get to see the result of your amazing sacrifice every day. And what a miracle your husband is – Nordic skiing?! That’s amazing!!!! Congrats to him for having the strength to get himself well enough to do that again and congrats to you for having the courage to help get him there. Thanks again for the continued support and of course I will keep you posted!! 🙂

  • Teri Navickas

    P.S. I have used the same quote before. It’s one of my favorites! God bless.

  • gtaniwaki

    Hi Melissa – It looks like you are well on your way to having your donation happen. I’m happy for you. Best of luck and best wishes.
    George

    • melissaarlio

      Thanks, George! I’ve been reading through your posts relating to your surgery again – they’re getting me so excited!!!! Thanks for such an informative and well-documented recollection!!!

  • Lola

    I’m so excited that you will soon be one of ‘us’… I have never met you but feel so proud of you.

  • 1 kidney down, 3 recipients going strong « Consider the Stars

    […] garage, I ran into Tracy Morgan for the second time since this journey began. If you recall from this post, I saw him in the elevator during my marathon day of testing back in January. I never said anything […]

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