Monthly Archives: November 2010

a big scare & new appreciation

Hm. How to begin after such a long (and scary) absence? No better place than the beginning, I suppose!

Last I left off, I was waiting to hear the results from my initial round of testing. I have to admit, I assumed there would be no problems. I’m 25, going on 26 in January, in great health (to my knowledge), eat healthy, and keep myself in shape. What could possibly be wrong? I feel great, everything seems to be working just fine – no symptoms, no problems, right? So when I didn’t hear from my doctor about my results in the 3-4 days I was told it would take, I assumed it was because everything came back as expected (I was told they would only call if there was a problem), but I still was anxious to get the official ‘Ok’. So I called, and I called, and I called again. Then finally, just as life always seems to unfold, when I was in a meeting at work, my phone rang – the doctor’s office! Voice mail – probably confirming everything came back a-ok. Another call from the doctor – another voice mail. Eh, just making sure I got the message so I stop annoying them. One more call and one more message. Hmm. I was officially nervous. I kept telling myself it was nothing but I couldn’t help but run right into the hallway and check my messages the second my meeting ended. You know, just to be sure.

All three messages were of the same nature: ‘Hello, Melissa. We received your results and we’d like you to call back as soon as you can to schedule a follow-up appointment.’

What? Follow-up? Why? To tell me how amazingly perfect and wonderful my results were?! To take a photograph, maybe, with me and my sparkling lab work as a model of peak blood and urine condition?!

A phone call later my high hopes were dashed – the doctor wanted me to come back to the office to discuss a few ‘red flags’ in my results. What? How? Impossible! Don’t you know I eat organic!? I take supplements and multivitamins! I work out 5 times a week! I RAN A MARATHON! I pestered and pestered the secretary until she told me, briefly, the issue – the creatinine and protein levels in my urine were high. I literally felt my heart drop. I didn’t know what it meant but I knew it couldn’t be good if the doc needed to speak to me in person about it.

Despite every fiber of my being warning me not to, the second I got back to my computer I Googled ‘elevated creatinine in urine’. Bad decision. (Warning: Googling symptoms of any sort will inevitably cause you to think you are dying. Don’t do it. Ever.) Almost every result that came up pointed to three things: kidney damage, diabetes, or heart disease. I was hoping for maybe ‘flu’ or ‘infection’ or something that I could take care of with a few meds and some rest. But heart disease? Diabetes? Kidney damage? Could I actually be a walking case of the biggest irony of all time – a potential kidney donor who finds out she, herself, will soon need a kidney? The rest of the day flew by in a blur of tears, disbelief, and worry. I scheduled an appointment with my doctor for two days later (translation: two years in thinking-you’re-going-to-die time) and spent the rest of my day trying to work and go on with my life, but mostly just Googling every possible combination of the words ‘urine’ and ‘creatinine’ possible.

I mentally prepared myself as best I could before arriving at my doctor’s office. I swore I wouldn’t cry. I cried. Nothing was really known yet, but just the possibility of something being wrong was enough to drive me to tears. My health – it is by far one of the most important things in my life and the thought of it being in question never even crossed my mind. The shock alone was enough to do me in. My doctor sat me down and explained to me that it could very well ‘just be me’ and that it might be nothing to worry about, but that if I were his daughter he would want her to know all the facts and be ready for any possibility. He advised I see a nephrologist (a kidney specialist), gave me a number and a box of tissues, and did his best to calm my now running-amok mind. A few hours later I had an appointment with a nephrologist for the following Monday.

Monday was a chaotic mess. The details don’t matter much, but let’s just say that everything that could have gone wrong- that is, before the actual appointment with the nephrologist – did. In my twisted mind, it was all a sign that I was diseased and dying. I know. You don’t even have to say it – but I’m being honest and that is truly what I felt. Finally I saw the doctor and within a few minutes of studying my results, he had me smiling again.

Apparently, high creatinine and slightly high protein in urine is only a sign of trouble if there are other abnormalities in my blood. The rest of my results were ‘picture perfect’, as the doctor said, and in his expert opinion, my tests proved that my kidney was in ‘peak, excellent condition’ and ‘functioning beautifully’!! I breathed for the first time in days. I was healthy! I was in shape! I wasn’t watching every morsel I put into my mouth and rising before the sun to work out for nothing! I wanted to sing on the top of my lungs and dance down the streets! He said what was music to my ears – that saying my kidney wasn’t in condition to be donated would be like saying ‘the bride was too beautiful’. HOORAY!!!! But (there’s always a ‘but’ in these stories)…

Then the bad news. While the nephrologist pointed out that any specialist would agree with his assessment, he noted that the National Kidney Registry takes extra pains to set strict standards for all donors – especially anonymous ones, because they are putting themselves at risk for what is, to most people, no personal gain (if you consider saving the lives of multiple people ‘no personal gain’). In other words, while I’m in exceptional health with great kidney function, my numbers could disqualify me from donating my kidney. My heart sank once more.

As soon as I got home I contacted a transplant coordinator at NKR. She sent my ‘high’ numbers to the medical board which then asked that I redo the 24-hour urine analysis. I explained what the nephrologist said but it didn’t matter. To them, it seems, high is high, no matter what. While I understand their caution, I would be utterly heartbroken and devastated if I couldn’t donate. This whole scare has given me a new appreciation for my health, and gave me, however small, a taste of what people go through every day when they find out that their bodies aren’t working the way they want and need them to. What I went through absolutely cannot compare to the experience of the millions suffering out there every day, but if I was as scared as I was at the thought of something being wrong, I cannot even fathom what it would be like to actually have a health issue that you cannot fix no matter how hard you try or how bad you want to. And therefore, to know that I’m sitting here, with two perfectly good kidneys, not able to donate, while there are people out there struggling through dialysis and slowly dying waiting for just ONE good kidney practically brings me to tears. Being ‘too healthy’ to donate never crossed my mind. It would be the ultimate irony.

So here I am, back to waiting. I will be recollecting for my urine sample this Thursday and turning it over to the lab the next morning. Hopefully by this time next week I will have my results back with maybe slightly lower numbers. If not, I’ll send all of my results to the NKR anyway and hope and pray they interpret them the way the nephrologist did. And if they don’t, well, I’d like to say I gave it my best shot, but that’s never been my style. If they don’t, I will fight. I will write letters, get recommendations, see specialists who can back my argument. I’ve never been one to take things lying down, and with lives to be saved, I refuse to start now.

 

‘Defeat is simply a signal to press onward.’  [Helen Keller]

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the waiting game

Did you know that currently in America there are 87,000 people waiting for a kidney transplant? And of those 87,000, 12 will die each day while waiting. Absolutely staggering, especially when you think about how easy it is for people to help out and make a real dent in that ever-growing list.

While getting blood work prescriptions at my doctor’s office on Monday (for my initial tests to see if I can donate), he and I began talking about, what else, kidneys. He has several patients who have donated kidneys and said not one of them has reported any change in their lifestyle from before the surgery to now, post-op. I asked him a few more questions (even though at this point I think I know almost all there is to know on the topic!), and he told me something that I knew I had to share: In order to life healthily, with no issues or problems whatsoever, humans only need 20% kidney function – meaning either 10% from each kidney or 20% from one. Therefore, if someone has two, perfectly healthy kidneys, they have 4-5 times the amount of kidney function they need to be healthy, and even with just one healthy kidney, one would still have 2-3 times the amount they need. So basically, we’re walking around with all this extra kidney function just waiting to be used – why not share??

Something that always comes up when I tell people about what I’m doing is “What if your one kidney fails and you don’t have another?” Good question, but here’s the real deal: Almost all kidney afflictions attack BOTH kidneys, not just one. So having a second kidney doesn’t mean you have a ‘backup’ in case one conks out. And, if a kidney donor or their immediate family ever needed a kidney, they go right to the top of the list. Not a bad deal!

Anyway, after talking to my doctor on Monday, I headed right over to the lab to get all my blood work done, including an analysis of my 24-hour urine collection sample, which I did on Sunday. Once I got past the sort of gross part of actually having to collect my pee in this huge, traffic-cone orange container and store it in my fridge (ugh), it was actually kind of fun to see how much I urinated in one day. The average person pees about 1 liter a day – but, I drink a lot of water, so I was much closer to 2 liters (I always felt like I went more than the average person!). What wasn’t fun was lugging that huge jug around with me through Jersey City and Hoboken on Monday in a hail and wind storm. A small price to pay for saving lives, I guess!

Once at the lab, the technician took four vials of blood (and one, ‘just in case’) and another small urine sample. She said it would be about 3-4 business days before I got my results. Well, today was day 3 and you better believe I called my doctor first thing! Unfortunately, no results yet. Once I get them back, assuming I pass everything, I’ll send the results along with a form my doctor signed (saying I’m in good health and able, in his opinion, to proceed) to the National Kidney Registry. Once they receive it, I will be assigned a transplant coordinator who will begin the real process, and the real fun! I CANNOT WAIT!! Until then, back to work, back to real life, and back to waiting. And waiting, and waiting…

 

‘He that can have Patience, can have what he will.’  [Benjamin Franklin]


taking the plunge

The last few days have been incredibly exciting; I guess you could say they’ve marked the real commencement of this incredible journey upon which I am embarking. Let me start from the beginning:

Friday I felt like someone lit a fire under my butt. I had already registered as a potential kidney donor on the National Kidney Registry, which asks that anyone considering becoming a donor undergo six basic tests, send in the results, and wait to be contacted to move forward. However, other sites instructed me to first fill out a questionnaire before doing anything at all. Confused and not wanting to make any mistakes, I decided to go right to the source to figure out the next steps. My thoughts immediately went to Ok Solo, a wonderful blog written by altruistic donor Angela Stimpson. I’ve been reading this blog with such a fervent passion over the last couple of months – while there are countless, amazing blogs documenting donors’ journey’s through this process, something in the way Angela wrote really resonated with me. I found myself reading her posts, thoughts, and feelings and experiencing the overwhelming sensation that someone was reading (and blogging!) my mind. I went to her most recent post at the time and left her a comment stating that I was considering becoming a donor and could use some help. I didn’t have any expectations, but I did have a good feeling.

Just in case my good feeling was trying to mislead me, I logged into Facebook and went directly to the Living Kidney Donors Network page and posted there as well. Again, expectations were low, but I had that same good feeling –  the kind you get when you just know, you can just feel, that something awesome is about to happen. I signed out, crossed my fingers, and waited.

Well, I didn’t have to wait long. If there’s one thing I’ve learned thus far, it’s that this community, this network of crazy donors like myself, is extremely supportive and truly willing to help those who help others. Within mere hours, I received contact from both of the places I posted – from Angela (from Ok Solo), Leiann Ortega of Living Donor Awareness (via my post on the Living Kidney Donors Network page), and Harvey Mysel, founder and president of LKDN. Wow. I was totally blown away. Unfortunately, I was out enjoying my Halloween weekend at the time, but I spent a huge portion of the day on Sunday responding to their wonderful messages of support and enthusiasm, and soaking up every bit of information they sent my way.

Unanimously, they all agreed that my initial inkling – to start the process as NKR suggested – was the best thing to do. As Harvey pointed out, NKR has facilitated more paired exchanges and domino paired exchanges (which is what I aim to be a part of) than any other organization, and when you’re dealing with an intricate process like this, there’s no option but the best and the most experienced.

I also decided, with enthusiastic support from Angela, to have the surgery performed at the New York-Presbyterian/Weill Cornell Medical Center (that’s where she had hers done and I’ve read so many wonderful things about them, not to mention they’re a mere stone’s throw away from my apartment in Jersey City). So many decisions made in just a few days – I’m getting so excited and anxious!

Now that I was armed with new information, new friends, and avid support, I was anxious to get the ball rolling. So, first thing Monday morning I called my doctor, made an appointment to get a prescription for my initial tests, and then called the lab to see if I could go straight there after my appointment (scheduled for this upcoming Monday, 9am) and they said yes. Score!

To expedite the process even more, I will be stopping by the lab this week to pick up my urine collection container so I can submit that for testing on Monday when I go in for my blood work. Yes, folks, you heard me correctly – urine collection. And not just any old, one-off urine collection. I have to collect all my pee for 24 hours. Clearly this is a job that needs to be done on a day off from work, so I’ve slated this Sunday as the day. As someone who uses the bathroom quite often, this might prove to be a challenge – basically, I won’t be able to leave my house for more than a few hours at a time (unless I want to lug around a giant plastic container of pee, which, um, no). Kind of a bummer. But, as the weather begins to get colder here in New Jersey, I can’t say that I’m COMPLETELY upset about having a totally valid excuse to stay inside watching bad TV all day in my sweats. Christmas movies and reality shows, anyone?

 

‘I expect to pass through life but once. If then, there be any kindness I can show, or any good thing I can do to any fellow being, let me do it now, and not defer or neglect it, as I shall not pass this way again.  [William Penn]


because i can

Anyone who knows me well enough knows that once I decide I’m going to do something, I do it. It only takes a small spark to get my mind set on something and from that point on it’s all I can think about. Sometimes this is a dangerous thing and has caused my poor mother many sleepless nights over my nearly 26 years of existence.

I’ve always felt the desire to do something bigger than myself. Running a marathon was a nice start, but what I really wanted was to do something for others. I give blood and I try to donate to various charities when I can, but as a struggling, at-the-beginning-of-her-career 20-something-year-old trying to forge her way through life on her own for the first time, money in amounts large enough to make a true difference is hard to come by. I wasn’t sure what else I could do, until I read the February 2010 issue of Glamour – specifically this article.

Flipping through the magazine one lazy Sunday, I came across this story (about a young NYC woman who made an anonymous kidney donation and ended up setting off a chain that eventually saved 11 lives) and something caught my eye – or rather, my heart. I read it not once, but twice, and by halfway through the second read, I knew I was going to donate a kidney – and hopefully set off a chain just like Christina Do did. After all, why save one life when you can save many?

I put down the magazine and after a moment of thought, stated to my boyfriend, Bobby, ‘I’m going to donate my kidney.’

‘To who?’

‘I don’t know. Someone who needs it more than I do.’

After only a few concerned questions, Bobby gave in to the fact that my mind was already made up (I have a wonderful boyfriend who has learned over our years together that there’s no point in trying to fight me once my mind is made up). He gave me his full support, knowing that I would go through with it regardless, and so my journey began.

However, before the end of our conversation, he made me promise one thing – that I would do all my research and truly think it over – the risks, the rewards, and everything in between – before making any moves. I promised, and I did. There are risks (though minimal) and I know it will be painful and uncomfortable, but to me, the pain I’ll endure is incredibly modest in comparison to the misery and suffering the 87,000 people awaiting a kidney transplant go through every day of their lives. As someone who greatly values her freedom, it is heartbreaking to read about the thousands upon thousands of people who spend 3 to 4 hours a day, multiple times a week – for the rest of their lives – on dialysis. Even more heartbreaking are the tales of the countless people who die on an ever-growing waiting list each year, praying that one day it will be their turn to receive a kidney – and the gift of a new life – and never see that day.

But, perhaps the most heartbreaking of all, in my opinion, is the suffering of the family members and friends who have to sit idly by while their loved one endures endless pain – and even faces death – and there is nothing they can do about it. What I found in my research is that there are so many people out there who are perfectly willing and able to donate their kidney to a loved one, but can’t because they are not a close enough match. When I think about this, even now, I am brought to tears. There is nothing I wouldn’t do for the people I love, and I simply cannot imagine how horrible it must feel to be so utterly helpless while watching someone I care so deeply about suffer and inch closer and closer to death. No one should ever have to feel that way.

And therein lies the beauty of Good Samaritan (also known as altruistic or non-directed) donations. If all my medical tests come back within their normal ranges and the doctors give me the green light, my kidney could become part of a paired kidney donation or, hopefully, a donation chain. Basically, my kidney will go to someone else who needs it on the condition that their loved one (who is willing to donate but doesn’t match) will donate their kidney to someone else in need who is a match, and so on (also called a domino paired exchange, because of its chain effect on potentially so many people). In this way, my one act will not only save one life (which is pretty darn good on its own if you ask me!), but could potentially save many, many lives through a chain of donations. Not a bad reward for a few cuts and bruises, don’t you think?

I know that as I begin to tell people about my cause I will inevitably get the question ‘Why?’ – and I have gotten that question already from the few people who do know what I plan to do. Why? Because I can. Because God forbid I was ever in the situation where someone I loved needed a kidney, and I wasn’t a match, I would hope and pray that someone out there would step forward and do the same for me and my loved one. Because I truly feel that as fellow human beings sharing this world, we owe it to help others in need when we are in a position to give. Because I have been blessed with great health and vitality and two functioning kidneys, when all I really need is one. Because if more people stepped forward and became Good Samaritan donors, we could virtually eliminate the waiting list in the United States (pretty amazing, isn’t it?). Because, when I really thought about it, and researched it, and debated over it, I couldn’t think of a good reason why I shouldn’t do it. And to me, that’s reason enough.

 

‘I arise in the morning torn between a desire to save the world and a desire to savor the world. That makes it hard to plan the day.’  [E.B. White]