1 kidney down, 3 recipients going strong

Wow, it feels so good to be writing again. It’s been a long time and a lot sure has happened since my last post. I apologize for the long silence – with the recovery, the job hunt, and everything else going on, it’s been hard to find the time to just quietly sit down and write. But it’s about time I did and I guess I should just take it from the top, right?

My parents, my boyfriend and I arrived at NYP at about 5:45 am on Tuesday, March 8th (I’ve never seen the city streets look so empty and quiet!). Although a little anxious to get things underway, I felt a surreal sort of calm where I’d assumed I’d feel nervous. In fact, not at one point throughout the entire morning leading up to surgery did I feel nervous. That’s due in part to my wonderful support system and the amazing transplant team at Weill Cornell, but I also believe that it was a sign that I was meant to do this – that everything that has happened in my life thus far was leading me to this very moment. I felt very at peace with myself and my life and all that was happening.

My boyfriend, Bobby, and me in the waiting room.

Most of the morning was spent waiting – me and my caravan moving from waiting room to waiting room. My first stop was to change into my hospital pants, socks, gown, and robe. After that, I was taken into a small room to have a little bit more blood taken (which proved to be a somewhat difficult since I hadn’t eaten since about 11 am the morning before or had anything to drink since 10 pm the previous night). After a bit more waiting, Dr. Del Pizzo (my surgeon) came in to mark up my abdomen. At that point it was officially determined that my left kidney would be removed through a single incision through my belly button. A few minutes later, two nurses came into our private waiting room and told me it was time to say goodbye to my parents and boyfriend and make my way to the operating room. I said my see-ya-laters and excitedly made my way over to the OR. It all felt right.

Me in my stylish hospital garb!

My wonderful parents right before my surgery.

When I got to just outside the operating room I had to put a cloth cap over my hair and then sign a few more papers (I have no idea what any of them said to be honest, but I’m pretty sure I was signing my life away, or at least my left kidney). A few more nurses came out to go over some information one last time, verify a few things, and explain what was about to happen. Then I was led into the room and onto the large operating table. The room was abuzz with countless people – nurses, assistants, doctors, anesthesiologists, and Lord knows who else. Everything happened so quickly from this point on that it never felt quite real. I remember feeling cold when I got onto the table, so the nurses covered me in warm blankets and then inserted my IV. For some reason, though, the moment it all really hit me was when two nurses strapped the lower half of my body down to the table. I wasn’t afraid, or nervous, or panicked, just suddenly acutely aware of what I was about to do. But there was barely any time to think about it by then – among the flurry of nurses and doctors congratulating me on what I was about to do, and telling me that it was a beautiful, wonderful thing, someone told me they were injecting into my IV something that would make me feel very relaxed – and almost instantly I fell into a dreamlike state. Next thing I knew, I was slowly drifting off into la la land and then, nothing…

A few hours, but what felt like a few seconds, later at around 10:30 am, I awoke in the recovery room. My first thought was confusion, but then I quickly remembered where I was and what I had done. I remember two nurses standing over me, one fidgeting with the oxygen tubes in my nose and the other asking me questions I don’t remember answering. Then, blackness again. When I awoke the second time (or what I remember being the second time), there was another nurse standing over me asking me how the pain was. Until that moment, I had felt nothing, but as soon as she mentioned pain, it’s all I felt. It wasn’t a sharp, shooting pain, but a constant soreness and a feeling of extreme bloating. I mumbled this to the nurse and was quickly given more pain meds. As I became more and more aware and drifted in and out of sleep, a nurse explained that I was now hooked up to a drip filled with powerful pain meds and any time I needed I could simply push a button and more meds would be flushed through my IV. That was probably the greatest news I ever could have heard, and I’m fairly certain I drained them of their stock in a matter of hours.

During one of my brief spurts of alertness, my parents and boyfriend were allowed to come in and see me. For some reason still unknown to me (though I blame the anesthesia), I cried when I saw them. It wasn’t from pain, it wasn’t from being afraid, I just cried because, well… because. And it felt damn good. I knew what I had done, and although extremely uncomfortable, the feelings of relief and accomplishment were overwhelming. A couple hours later a few nurses said I was doing well enough to leave the recovery room and so off I was, wheeled to my own private room with a bathroom, a TV, and windows with a few of the East River. Not bad!

Fresh out of recovery and feeling fine (thanks to the pain meds)!

The next few hours I was still in and out of it from the anesthesia, the pain meds, and just the whole morning in general. Since I had barely slept more than a couple hours the night before, my body was craving sleep, and sleep I did! Bless them, my family stayed right by my side the entire time. Bobby read me cards, texts, emails, and Facebook messages I received from my wonderful friends and family, and my parents bent over backwards to make sure I was as comfortable as possible. As I became more and more alert, they told me that Dr. Del Pizzo ordered me on 24-hour bed rest. As it turns out, my left kidney and my spleen were fused together. Although not extremely common, it’s something that is typically found in people who were either in some sort of accident or who played contact sports and suffered a minor trauma to the area. I spent my entire childhood sliding into second base, slamming into people on basketball courts, and getting roughed up during field hockey – not to mention the countless other physical activities I engage in regularly as a highly active individual, so this was no surprise. Dr. Del Pizzo explained that my spleen was encased in scar tissue and my kidney ended up attached to it. Though this will in no way affect my health now or in the future, it did require a little more dissection than usual, so I wasn’t allowed to move all that much.

Normally, being forced to do nothing would be good news to someone just out of surgery. But any kidney donor will tell you that the key to recovery from a laparoscopic procedure is walking. During this procedure, lots and lots of gas is pumped into the abdomen so the surgeons can see the organs more clearly and have more room to work. During the surgery, this gas settles into the abdomen and elsewhere in the body, forming little pockets of air that can be incredibly painful. The only way to ease the pain is to naturally pass the gas, and the only way to do that is to move. Many kidney donors are encouraged to walk within hours of surgery – I was told the opposite. And over the next 24 hours, as gas pockets settled in my chest, my back, my shoulders, my neck, and even my legs, I could do nothing but lay there, on my back, and pump in the pain meds. With a catheter inserted, I couldn’t even use needing to use the bathroom as an excuse to get up. My only real relief was sleep.

My awesome boyfriend right by my side.

By the next morning, I was aching to get up and try to move some of the gas around. Throughout the entire preceding day, strings of nurses and doctors came in to check on me. My incision looked good and everything in my abdomen felt right. My urine levels and blood tests showed a healthy recovery as well. With the pain medication literally at my fingertips, I’d say the worst part was not being able to sleep very long – I was awoken every 3 hours on the dot for a nurse to come in, take my blood pressure, my temperature, and a few more vitals and check my urine levels. I appreciated the efficiency and concern, but deep down, all I wanted was rest.

Finally, at 11 am Wednesday morning, a nurse came in and told me I could attempt to walk around the room and into the hallway. Music to my ears! Until I tried to stand up, that is. It was pretty painful to bend, so I had to use my automatic bed to get myself upright and once I did, all I felt was a stabbing pain in my chest and back so bad it took my breath away. The gas. The nurse told me that gas can be so painful that people have gone to the ER thinking they were having a heart attack. Believe me, I get it. I pushed through, however, and being the competitive person I am, I not only walked into the hallway, but up and back the entire length and then even used the bathroom all by myself (it’s the little things). Exhausted, I got back in bed and went to sleep again, and continued this routine throughout the day until I was pacing the full length of the hallway multiple times all by myself.

Despite my progress, the doctors insisted I stay a second night, mostly due to my late start with walking (because of the 24-hour bed rest). I was anxious to get home, but knew that it was best to be in the hospital as I began to learn which pains where normal and which were not. That night, I finally had solid food and began to feel a bit better as the day wore on.

The next morning, Thursday, March 10th, I was released from the hospital. My family and I decided it would be best if I went to my parents’ house for a few days since my boyfriend had to go back to work and I was still pretty helpless. Although I did want to go home and sleep in my own bed, I wasn’t exactly opposed to having my mom take care of me the way only a mother could! Before I left, my coordinator, Marian, stopped by to let me know that my recipient was still doing well and that her creatinine levels were already at 1.1 (a measure of kidney function – well within the normal range for women – and a sign that the transplant was successful). I was ecstatic and now felt like I could home happy. After a bumpy, slightly agonizing ride, I was back in my parents’ house and on my way to recovery.

The next few days were the roughest. Though my incision didn’t hurt much, the gas pain was constant. It was typically dull, but the slightest movement could randomly send a shooting pain through my body. I forced myself to walk up and down my parents’ street and while the walk itself was hard, the relief I felt afterwards was worth it. My first shower wasn’t the most successful or graceful thing I’d ever done, but it felt good to be squeaky clean. I didn’t eat much, and for the first week or so didn’t have much of an appetite anyway, but even when my appetite returned, it was uncomfortable to eat the amount of food I normally would. One of the most difficult parts, in my opinion, was sleeping and waking up. Sleep was hard because I had to lay on my back and I am a dedicated stomach sleeper. The only comfortable position was sitting up in a cocoon of pillows. Waking up was painful because the gas would settle in my back during the course of the night and when I got up in the morning, it would stir things up in my abdomen and cause some pain and discomfort. But as the days crept forward, the discomfort slowly began to ease.

These pains, problems, and discomforts lasted for about a week. By the second week, I still had some lingering issues – a bit of gas and swelling remained and some muscle soreness in my back (which is normal because your body will instinctively try to protect this new ‘hole’ in your body). The second week I still spent the majority of my time resting, but was much more active than the previous week. And, considering I had a kidney removed, I’d say that’s not too bad! However, I still didn’t feel like myself. I felt tired, worn out, and not up for too much for too long. All normal, but frustrating nonetheless.

Week three I returned to see Dr. Del Pizzo for my follow-up exam. This week was truly my turning point. I began to walk more upright and was slowly regaining energy. Dr. Del Pizzo removed the steri-strips that had been covering the incision and I saw my belly button for the first time since the surgery. It wasn’t the prettiest thing I’d ever seen – it was swollen and still had scabs and irritation – but it was healing well and the scar was barely noticeable. A few more blood tests and a urine test and I was off.

Before leaving the parking garage, however, I spotted Tracy Morgan picking up his car. If you remember (from this post), I saw Tracy in the elevator during my marathon day of testing back in January. I never said anything to him, but I regretted it. Now, here was my chance. I approached him, tapped him on the shoulder, and told him who I was. I told him I heard he had recently received a kidney and that I hoped all was well, and that I was an altruistic kidney donor. He looked at me with such shock and appreciation, hugged me, and thanked me over and over again. He told me, “You don’t run into people like you just everyday. You’re number one in my book.” He even began to cry a little. To see someone directly impacted by kidney disease become so emotional and thankful for donors like me and all the others out there made me realize how truly important donation is. As if I needed it, it was affirmation, once again, that I had done the right thing for me, for others, and something truly special. To make that day even better, I later found out that my tests all came back perfect (creatinine at 1.0 already!), my recipient was doing beautifully, and that my chain had already spanned 6 people – meaning 3 people received kidneys so far due to my one act. Life is good.

Tracy Morgan and me outside NYP - there are still four kidneys between the two of us!

So here I am, four weeks after donating my kidney. To be perfectly honest, although most of the pain was gone by the end of the second week, I still, four weeks later, get tired very easily. I feel much more like myself and aside from a few tweaks of discomfort here and there, I feel pretty damn good (I even returned to light workouts at the gym!). However, the fatigue has had the most lasting hold on me. Other donors warned me about this – that the fatigue can last for months, even – but I didn’t quite realize how noticeable it would be. It gets better and better each day, even though I still have my slightly bad days here and there, but I can certainly see a decrease in energy and stamina. Like everything else, though, that will return, and all in all, this process was pretty easy considering I had an organ removed! And the best part is that someone else, 3 someone elses, actually (!), are walking and living a healthier life today as a result.

My life is by no means perfect. Though I feel great, I’m not completely healed yet and it shows. I’m in the middle of a grueling job hunt and as a result, the plans my boyfriend and I had to move forward with our lives have been put on hold. But this experience has taught me to see the good through the bad. I’ve become much more in touch with my body and have a renewed sense of dedication to my health. The time that I don’t spend at work is now being spent pursuing all the creative ventures that I’ve put on hold for so long, like a children’s book I’ve been mulling over for months. I’m learning who I am, who I want to be, and what I’m capable of. I know I am strong, passionate, and creative, and that I can handle whatever curveball life may throw at me. And most importantly, I’ve come to understand what’s truly important in life – that happiness has nothing to do with things or titles, but with people, with love, and with health. I’ve grown more in this past month than I have in years and I know that at the end of the day, I have a richer life than I ever could have asked for. Everything happens for a reason. Life moves on whether you’re ready or not. And I fully intend to enjoy every minute of this beautiful, crazy, unpredictable ride.

Anything I’ve ever done that ultimately was worthwhile… initially scared me to death.  [Betty Bender]


10 responses to “1 kidney down, 3 recipients going strong

  • gtaniwaki

    Great post! I’m amazed how different each donor’s surgery and recovery is.

    I’m glad you were able to meet Tracy Morgan. It’s wonderful that you got a second chance since you didn’t speak up during your first encounter.

    Ha ha, yes 4 kidneys between the 2 of you, but from 3 different people!

    • melissaarlio

      Hi again, George!! So nice to hear from you!! It is so crazy to hear everyone’s donation stories. No two are alike! Even though I had a little additional pain, my recovery as a whole went so well, I couldn’t be more pleased with it! And getting to meet Tracy Morgan was pretty cool too!!!! Please continue to keep in touch – hope you’re doing well!!

  • Angela Stimpson

    Beautiful! I got emotional reading this, Melissa… bringing back memories of my donation day. I’m so proud of you and am so happy to know another angel in this slowly growing group. Hugs…

    • melissaarlio

      Thank you for your constant support, Ang! You’ve been such an amazing mentor through this whole process and I simply couldn’t have done it without you! I feel so at home with our little kidney crusaders group and it’s nice to know that we’re all in this together!! xox

  • Bob

    I thoroughly enjoyed reading your post. Having been through this so recently myself, I could picture exactly where you were as you were explaining your experiences. For me, one thing I think I’ll always remember about the whole experience was walking to the operating room and hopping up on the operating table. For some reason, I thought that was so strange, as I’ve always seen people (especially my wife) get wheeled off to the operating room on a stretcher, so I just assumed I would as well. But, then again not too many people go into surgery as healthy as you and I were!

    When I first had read a couple of weeks back about your spleen and kidney being fused together, I was quite taken aback, wondering why they would have gone ahead with the surgery in such a case. But, I gather they were able to manage to separate the two organs without setting you back too much – just one extra day in the hospital. It does sound like you probably had a lot more pain to deal with as I result than I did, though.

    I hope your job search goes well – I imagine it must be tough times to be job searching. If you are at all thinking about children’s book writing, you should check out the blog of a friend of ours, Susanna Hill at http://susannahill.blogspot.com/. Susanna has had several children’s books published, including Can’t Sleep Without Sheep, which is currently the favorite book of my twin seven year old boys.

    And, your story about meeting Tracy Morgan is pretty incredible! What are the odds of getting a second chance to meet someone like that?

    Hope your recovery continues to go well. Take care, Melissa!

    • melissaarlio

      Hi Bob!! First of all, thank you, as always, for your support!!!! I so look forward to hearing from you! Next, I hope you and your wife are doing well (it sounds like you are!). I, too, found it odd that we literally hopped onto the table ourselves, but like you said, we were both fit as fiddles going into surgery, which I think is not typically the case! The whole kidney/spleen thing initially worried me, but everyone assured me that it was completely normal. My spleen must have suffered some trauma (growing up with a big brother who beat me up a lot and playing lots of sports, I can only imagine the abuse my poor body has taken internally) and the scar tissue it formed caused it to fuse with the kidney. Del Pizzo said it was nothing, just a few extra snips, but just wanted me to rest to be sure. Better safe than sorry!

      I will definitely check out your friend’s blog, and maybe even reach out to her if she’s up to it. I have/have had some interviews coming up, but nothing set in stone yet for a full-time position, so I have lots of time to work on my book which has been an idea in my head for some time. Maybe she can give me some pointers, so thank you for letting me know! And as far as Tracy Morgan – I knew I couldn’t pass up the opportunity twice!!! 🙂

      Hope you’re well – please continue to stay in touch!!!!

  • lexi

    I’ve thought a lot about you since early March and was so thrilled to find this post. What an incredible, moving update. There’s so much for you to be proud of. Congratulations!

    • melissaarlio

      Thank you so much, Lexi! And thank you, again, for helping to spread the word about living donation. I know it’s not for everyone, but if we can just reach the ones who might consider it, lives will be changed!! Hope you’re doing well!!!

  • Rhonda Miles

    Glad you four way went well. I did the samething April 5, 2011 for my Dad his kidney is not doing well and they are going to take it. My heart is hurting I gve my kidney to someone else in order for him to get one and it didn’t work out.

    • melissaarlio

      Rhonda, I’m so sorry to hear that your experience didn’t go so well and that your father is still sick. Please don’t forget though what a wonderful gift you have given to someone – no matter the outcome – and you did the best you could to help your father. More than most people would even dream of doing! I will keep both you and your father in my thoughts and prayers!!!

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