living kidney donation

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Sleep Deficits (or the hazards of thinking you’re hot sh*t)

Posted by ookgirl on June 9, 2013
Posted in: Ironman, Living Kidney Donation, triathlon. Tagged: , , , . 1 Comment

Coming off of my PR at the Columbia Tri (19th in my age group) and placing third in my age group at the much smaller Rock Hall Tri, I’ve developed a serious case of inflated head syndrome over the past few weeks. I’ve noticed that I can’t get through doorways or stick my noggin out of the car window; carrying this big melon around may have even made my lower-back pain worse. I’m telling you: It’s a serious condition! Seriously, though, it hasn’t really made me think that I’m “all that” –rather, it has caused me to think I need to work harder.

I approached this past week as someone who should be able to ramp it up and train like an Ironman (woman). I’m a big-girl triathlete now; I can do anything. But there was one thing I couldn’t do very well: sleep. Unfortunately, I didn’t let that slow me down; so I didn’t rest as much as I needed to. Consequently, my work week was sub-par, and I spent an entire day thinking I had lost my wedding ring, because I couldn’t remember that I had left it sitting on the ring holder in the bathroom. My brain just wasn’t firing on all cylinders. This is what happens when you don’t get enough sleep. It has this cumulative effect, and you get the feeling that some big, absent-minded mistake is just around the corner.

I worked out six out of the last seven days, but I think I only slept well about 2/3 of the time. Other kidney donors have complained about insomnia, but who knows if it’s actually related to the donation. I’ve never read a study saying so. (But then, again, I haven’t read many studies, period. So, do *not* consider me an expert on that stuff!) At the same time, as a forty-four-year-old lady, I could be going through normal, hormonal changes that affect sleep. So, that could be it as well. All I know is – it doesn’t gel with Ironman training. Or even Half-Ironman training. I need to get this sleep thing figured out! I’ve tried melatonin, which helps a little. Having a fan running in the background also helps. But these feel like band-aid solutions at a serious time. Now, we have only 24 weeks to IMAZ!

As I write this, it’s exactly 42 minutes past my bedtime. I need to sleep. My alarm goes off at 3 am. I sure hope I can get some Zzzzz’s before then. Good night!
-Ookgirl

Happy & Motivated

Posted by ookgirl on June 2, 2013
Posted in: Uncategorized. Tagged: , , . Leave a comment

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Today, I am happy and motivated. With only 25 weeks left until Ironman Arizona (IMAZ), I am ready to ramp things up and get serious. I managed to place third in my age group at the Rock Hall International Triathlon yesterday, and I received this cool pint glass as a reward. Woohoo! Apparently, the Set-Up Events race organizers think you should celebrate with a beer after you place in your division. I say “Okay!  Don’t mind if I do!” 🙂

I was actually surprised that I placed, because I had totally let myself go after the Columbia Olympic Tri, and I’m sure I gained a bazillion pounds over Memorial Day weekend. So, I didn’t have high expectations. But this was a small-ish race, so the field was not that large. The run was extremely hot; so I wasn’t at all pleased with my run time. But I was happy with my bike, and I ranked first in my age group on that. So, I am totally happy.

And now I am motivated. The day before the race, I was thinking I just needed to make it a good workout day and get back with the program. So, that’s what I’m going to do. I’ve got an Ironman training plan to follow and a couple of swim training plans to work with. I need to try to keep the run workouts consistent also.

The run is the thing. That’s what I’ve decided.

Speaking of the run, I wanted to report that my run has steadily been improving as I’ve gotten into the second year following my kidney donation. In other words, I was a total snail after the surgery, but I’ve moved up into the solid feisty tortoise category now. Other people told me it would take about a year to get back to normal, and they were right. Last year, there was practically nothing I could do to improve my running. But this year, things seem to be moving in the right direction. But now that the heat of summer is here, I need to have a good strategy. The heat messes with my form, and I tend to injure myself. In fact, I’m already having a plantar fascia  problem in my right foot. So, I’m going to try to do some of my running indoors this summer. That way, I can get in more miles but not do so many of them in the heat.

I also wanted to report that the nerve damage I had in my left thigh following my surgery has diminished. I still feel the slight pain/burning sensation when I rub the outside of my thigh. But it’s not nearly as noticeable. So, if any other donors happen to have this post-surgery issue, I hope that means you will also see it go away over time.

I do not have any other races on the schedule for a few months. But we have some century rides planned. It will be time soon to start working in some good, long brick workouts. Craig and I are psyched and ready to get serious. Bring it!

Ookgirl, Trigirl, Spazgirl

Posted by ookgirl on May 28, 2013
Posted in: Ironman, Living Kidney Donation, triathlon. Tagged: , , . Leave a comment

Have I mentioned what a spaz I am? I may be an only one kidney girl, and I may be a triathlon girl, but more than anything I’m truly a spaz girl in just about everything I do. It’s sort of my signature 🙂

I’m especially a spaz on my bike. I’d love to be able to handle my bike as well as my husband handles his, but no. I’m a clutz. I don’t crash all the time or anything. But I have been known to just fall over … for no apparent reason. And don’t even ask me to take a tight corner. No, I’ll be the one who gets off her bike to turn around, thank you. I’m just saving us all a moment of embarrassment. Sometimes, I do stupid things like ride out into the lane of traffic, giving a bad name to cyclists everywhere. One time recently I even found myself in the middle of an intersection, thinking I had a green arrow on a left turn, but It was just a green light & I was supposed to yield. So I did, but I was already in the way. The driver just looked at me with astonishment and let me turn. I’ve been lucky with that. No one has hit me or been seriously rude to me during these blunders. But I’m sure my luck will run out if I don’t get my spazziness under control.

It doesn’t end there either. Although I’m a pretty strong swimmer, my swimming ain’t pretty. Watch me from overhead, and I look like Seinfeld’s Elaine dancing. I know this because my husband videotaped me at the pool. I was horrified when I saw it. In my mind, I’m swimming like Michael Phelps, but not in reality. Oh well, triathlon is not a beauty contest, thank goodness!

I think my running looks okay, but I really don’t know. I’m afraid to find out. Have you ever been in a race and seen some crazy running gaits? I have to look away. Some people run in a very awkward way. It’s almost painful to watch. I hope I don’t run like that.

I’m not really sure what my point is in writing this blog entry. I guess I just wanted to make sure that if you are reading my blog, you really know what you are dealing with. Full disclosure and all that. This way, if you see me in a race, in all my spazzy glory, you’ll be able to say, “Hey, I bet that’s Ookgirl.” 🙂

Knowledge Is Power

Posted by ookgirl on May 20, 2013
Posted in: Ironman, Living Kidney Donation, triathlon. Tagged: , . Leave a comment

I think there’s no doubt that triathletes love to talk triathlon. Likewise, kidney donors like to talk to other kidney donors and prospective donors about the special donation experience so few share. We just all know what it was like to not know much about what we were getting into. So, whether it’s triathlon or kidney donation, you want to talk about it.

There’s so much to learn, and you’d be a fool not to learn as much as you can. It automatically makes for a community; whether you are shy or outgoing, you instinctively seek out other people in these special groups – to learn from, commiserate with, give support to, etc.

I was reminded of this recently. First of all, I just completed my first race of the season and got a PR (personal record). I’m so thrilled! It was the Columbia Triathlon (Olympic distance), a very challenging course, and I did it in 2:51, sixteen minutes faster than last year. One reason I did so well is because the race is local and I could train on the course and learn from my husband and other people in my Tri club. Knowledge is power, and knowing the course is huge. Plus, I worked hard in my training, which was probably a big thing as well.

On the kidney donation side, I was reminded of this through a listserv I’m on. I’m on the livedonor@listserv.kidney.org mailing list. I recommend that other donors/prospective donors join it. [Update: not even a week after I wrote this, they discontinued the listserv because it had gotten too big to manage. So, now the only resource I can suggest is http://www.livingdonorsonline.org, which has very useful forums.]

But I have to give you a warning… It can be depressing and overwhelming at times – to hear what other donors say. There is a lot of support, but there is also a lot of paranoia about how much we still don’t know about the long-term effects of donating a kidney. I find that when a really negative thread starts going, I have to stop reading. But you can’t totally ignore the excellent resource of what other real donors are going through. You just can’t find a lot of that info out there.

The bad thing is that it is all anecdotal, and although some people post scientific articles, you can’t be sure what their biases might be. So all you can do is file it away for future reference or do your own further research. Nevertheless, I think it is an important resource, because it seems like non-donors and folks at the transplant centers do not want to see or discuss any of the possible negatives of donation. It’s not that they don’t care about you or care whether you are fine following donation. It’s just that they only want to celebrate this thing you have done to help another person, and they want that to be the end of the story. I think we would all like it to be that way. But the truth is that we don’t know. We know that most of us are fine right after the surgery, and we can lead a normal life. But we don’t know the most likely long-term effects. And, unfortunately, no one else wants to talk about it except us.

But like I said, we love to talk about it. So that’s a good thing 🙂
And, despite it all, I still haven’t run across a donor who wouldn’t do it all again. But I do think most of them wish they had been more informed. It’s the same way you feel in the first moments of a rough swim at a race you’ve never done before: Geez, what did I get myself into?

But if you do your research and your training, it will all pay off in the most glorious way. At least that’s the way I felt after my donation and also yesterday, at the Columbia Tri.

Nanticoke River Swim with my crazy tri club mates

Posted by ookgirl on May 6, 2013
Posted in: Ironman, Living Kidney Donation, triathlon. Tagged: , , . Leave a comment

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We survived the Nanticoke River Swim, although the crazy chop in the water caused the race organizers to limit us to two miles instead of three. So, I got a good experience in cold water for near-Ironman distance. Can’t brag about a three-mile, but I can still feel good about this one. Here, I’m pictured (in the white swim cap) with my crazy Tri club mates. Craig (my husband) is the guy in the back without a swim cap. We had fun!

Bottled Confidence

Posted by ookgirl on May 3, 2013
Posted in: Ironman, Living Kidney Donation, triathlon. Tagged: , , . 1 Comment

Out of the three disciplines in triathlon, it seems like muscle memory is most important for the swim. Typically, you train in a pool, in water you can see through, and with lines on the bottom to guide you. But in a race, you find yourself in open water, surrounded by a bunch of other swimmers. It might be murky and choppy, and often, you feel like you have no bearings. As you try to get into a rhythm and swim like you normally do, you have to hope that muscle memory will kick in and get you where you need to go.

In two days, my husband and I get to face this for the first time this season. We are doing the Nanticoke 3-mile swim in Bivalve, MD. The water will be cold (~58-62 degrees), and we will be doing the longest distance we have ever done (swimming). The thinking is that if we can swim 3 miles in cold water now, then the cold 2.4 miles we have to do in Ironman Arizona in November should be a piece of cake.

I think of it as going to get my bottle of confidence. When I was a teenager, I was very insecure. I guess a lot of teenagers are. I would get uptight about social situations where I felt like I didn’t fit in. My mother would say, “You just need to have more self-confidence.” I always thought that was funny, as if I could just go buy some bottled-up confidence at the store. There was no way then (that I knew of) to simply “have more confidence”. But now, I look at it differently. So much of life –like triathlon training– is about gaining experience. You have to jump in and go for it. Otherwise, you’ll never know what you can do. And, once you find out what you can do, the confidence just pours out.

In a weird way, the same can be said for the organ donation process. First of all, you don’t know if you can be a donor until you offer and get tested. And then, after you donate, you don’t know if you’ll have any issues … or if you’ll even be able to strive to do more than you did -physically- before the donation. I guess that’s what I’ll be finding out this year. And when I do, I’ll just open up a bottle and pour myself some!

You Forget

Posted by ookgirl on January 1, 2013
Posted in: Living Kidney Donation. Tagged: . Leave a comment

I think other kidney donors would also tell you that, remarkably, you tend to forget you have donated a kidney. Life for most donors is just the same as it ever was. You have a recuperation period, but then, you’re just you again. I think that’s why it’s been hard to maintain this blog, because I sort of forget about it.

Well yesterday, I received a reminder from the person who never forgets: my recipient. It was so special to get this email from my Stepdad, that I had to share it here.

Dear Jenn,

I know I’ve told you several times how much I appreciate what you have done for me. Now it’s been a full year and I can thank You for giving Me one of the best years of my life. Before your wonderful life-saving gift, my entire world was dominated by having to be a patient in some clinic every other day for the rest of my life. I can now live a normal and very enjoyable life. God bless You.

All my love , Gary

I may complain about my life from time to time. But I hope I never forget how grateful I am that I could do this one thing. I don’t know what the coming year holds. Only God knows. But I hope it is a healthy year for those I love and that we remember to take it all in! Every moment is precious!
-Ookgirl

Gratitude Attitude

Posted by ookgirl on November 25, 2012
Posted in: Uncategorized. Tagged: , , . 2 Comments

Okay, I totally stole that title from someone else. But it’s so perfect, I couldn’t resist!

It perfectly describes the outlook I want to have. It’s an attitude that focuses on how thankful I am to be able to just try stuff… to face challenges — whether they involve successes or disappointments. I’m so thankful to be in a position to fail or succeed. Some people don’t even have the chance to try some of the things I am doing. And that takes me right back to my kidney donation…When I was on the path to donating a kidney to my stepfather, I felt lucky to be able to do it. (At the time, I also wished I could donate a colon to my father, who was being treated for colon cancer, but you can’t donate one of those…)

So many people can’t find a match or a person willing to donate, and others aren’t healthy enough to be a donor. I was willing, I was a match, and I was healthy enough. And, not only that, my stepdad is doing well now. How can I not be in awe of how nicely that all worked out??!!

As people who read this blog know, my big hobby since before donating has been doing triathlons… And so often, in the midst of my training, I whine, I fret, I agonize, but I forget how fortunate I am to even try. This past year, after donating and recovering, I really had the wrong attitude. You would have thought that I’d be thankful for every finish line I crossed or mile I completed. But instead, I had it all wrong.

I had done my first triathlon in 2010, and by 2011, I saw improvement in my times. I did my fastest marathon ever, and I felt invincible. I loved the purity of working hard and seeing results. You could rely on it. But in 2012, despite the fact that I had just donated an organ (HELLO!), I expected to see the same trajectory of improvement. Surely my times would be even faster than 2011. (Um, hello?) So, obviously, I was disappointed when I bailed out on two races, only doing one half-Ironman, and running two marathons even slower than the one I ran the year before, despite putting in even more miles of training. Suddenly, working hard did not automatically equal improvement. But I missed the most important part.

I forgot to just be thankful that I could still do races at all. I forgot to savor the experience and appreciate it for what it was. I forgot to try things just for the grace of being able to try them. Well, now, remembering that outlook is going to be so important over the next year, because… as of last Monday, my husband and I are registered for the Ironman Arizona triathlon! It’s 140.6 miles of racing, and it’s most definitely the hardest thing I’ve taken on to date. It takes place on Nov. 17, 2013. So, we have just over a year to prepare. Even though I can’t imagine myself finishing it yet, I can imagine myself *trying* it. And, that’s really all that matters. I know I can try it, and I know that I’m thankful for that opportunity. It doesn’t matter how I do nearly as much as how fortunate I feel doing it. And, on top of that, I get to do it with my husband, who deserves a special mention right about now…

My husband is not only already an Ironman seven times over and the person from whom I’ve learned practically everything I know about how to do this triathlon stuff… He is also the most generous person I know. And, I feel absolutely positive that I never would have even thought about donating a kidney if I hadn’t seen the generosity of my husband. It comes so naturally to him. I have to work at not always putting myself first. But Craig is the exact opposite. I am so grateful to get to train for this Ironman with him, and I pray that I can be the support to him that he is to me. I hope that I can appreciate every moment that we get to do this together, because nothing is certain. We really don’t know what the next year holds or how this Ironman thing will turn out. But we can live each moment together and relish it. And whenever I feel like complaining about it, I sure hope I can stop myself and realize how lucky I am!

Here is a video of highlights from the 2012 Ironman Arizona – for those who have never seen one: http://www.youtube.com/watch?v=yrsqgPgekW4&sns=em

More than two months since my kidney donation

Posted by ookgirl on February 19, 2012
Posted in: Living Kidney Donation. Tagged: . 1 Comment

It has been about 70 days since I donated my left kidney to my stepfather, Gary. I’m happy to report that we are both doing really well. In fact, I sometimes have to remind myself that I even donated. My stepdad started walking for exercise after the surgery, and he continues to do that. He has also gained a little weight, since he can eat more of the things that he likes now.

I have returned to my triathlon training. I’m swimming up to 2,000 yards in my workouts and running up to six miles. My cycling has just been so-so, but that will improve as Spring approaches. I need to up my running, but I’ve tried to not push myself too much.

One thing has lingered after the surgery. It is not impeding me at all, but it is worth mentioning so other donors can know about it… I noticed a bruise-like pain on the outside of my left hip/thigh a few days after surgery. I figured it would go away just like the other odd pains I had. But even a month later, it was still there. My surgeon had me get an ultrasound to rule out a blood clot, which was unlikely anyway. That came out negative, and I was relieved. But it still bothered me that I didn’t know what the pain was. Finally, another donor told me about nerve damage she had following surgery. It turns out that there are nerve bundles where the kidney is that run down into the groin and thigh areas. Apparently, one of these nerves got damaged, and now I have this weird pain, which I only feel when that part of my thigh is touched.

Perhaps it will eventually go away, but for now, it’s totally not a problem. I couldn’t feel more blessed. To think that my stepdad has a more normal life now and no dialysis, and I have my normal life back also… Well, it really couldn’t be any better.

As I move toward my six-month checkup, I plan to be as good as I can about drinking water. It’s always been important, but for the rest of my life, it will be even more important. By the time I go to Atlanta for my checkup, I will have done my first triathlon of the season. It will feel good to have gotten to that point before I see the doctors again!

Cheers,
Jenn

A Week & Two Days after Kidney Donation

Posted by ookgirl on December 18, 2011
Posted in: Living Kidney Donation. Tagged: . Leave a comment

In my last post, I mentioned giving up my pain medication. Well since then, I’ve made the mistake of over-doing it and have had to take some of my Lortabs here and there the past few days. I’ve mainly taken them at night, so I can sleep.

I overdid it by not giving myself enough rest during the day and also by engaging my abdominal muscles too much. At least, that’s my theory. I hope I haven’t done any serious damage. I feel pain in my lower abdomen, between my main incision (for hand-assisted laparoscopic nephrectomy) and the lower side-port incision. The pain does not seem to be from the incisions, but something deeper. So that’s why I think it’s my abdominal muscles, either that or gas in my intestines. Also, I’ve had weird twinges of pain in one elbow, my hip, and other strange spots that don’t seem related to the area where I was operated on. I’m not sure what that is.

I’m going to see how things go and ask about it all at my follow-up appointment in just four days from now. If it gets worse, I’ll call the clinic. But so far, it’s not so bad as to force me to take the max on the pain medication (two Lortabs). I’ve only taken one at a time, and that has been enough. When I can, I go without it, so even better.

My mind does spin sometimes, thinking of all the worst-case scenarios that it could be. But since I don’t have any other problems ( i.e., no fever, shortness of breath, extreme weakness), I think it must be just typical post-operative pain.

I’ll keep the blog posted on any developments. In the meantime, I should once again note how grateful I am to those who continue to follow up with me to see how I’m doing. I continue to receive gifts, cards, emails and so forth. My donor buddy checked up on me at my one-week point, and that was sweet. It’s hard to believe that it’s already coming up on two weeks!

-JB