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A Kidney Donor's Journey

How I "Rock 1 Kidney"

7/21/2014

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I recently came across the site Rock 1 Kidney, which shares stories of how donors are living with one kidney. I submitted a short story to the site, and thought I'd do my one year update in the same manner. 
First, the brief update: I'm feeling great! Went in for labs the other day, but haven't gotten them back yet. I feel 100% (and have for a long time), and the only "issue" I have is cosmetic - the 'big' scar on my lower abdomen. My family went to Teddy's the other night for a celebratory dinner, which was fun (and delicious). I'll post the photos when I get them.

So, how have I been rocking one kidney in the last year?

Three months after surger, I ran a Spartan Sprint race. It was fun, and really challenging, and I was glad to have my teammates there to push me (sometimes literally!) through the tough spots.
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I've been riding bikes, watching gymnastics, cheering at t-ball games, going swimming, and just trying to keep up with my crazy kids, who literally climb the walls at home! 
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We've been camping a few times, and every once in awhile we even get a date night squeezed in!
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I've also been working hard to push, pull, and lift heavy weights (with some help from my kiddos). Setting lots of new PRs, and improving my technique. And lots of sprawls. I'm much stronger than I was before donation. (And I was worried it'd take up to a year to recover!)
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I've been trying new things as well. I joined a novice crew 'team' this summer, so I spend every Saturday morning on the lake learning to row. I just signed up for my first CrossFit competition and have been training for that. 
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This spring we participated in a National Kidney Foundation Kidney Walk with Teddy and his friends and family (it was clearly a nap-inducing walk). 
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Things I have NOT been doing with one kidney: taking NSAIDS, playing rugby, or kickboxing (none of which I did before!). Besides that, I'm living life like I still had two kidneys. The last year has gone by so quickly. I had such a great experience, and I encourage everyone to at least consider living donation, and at the very least register and tell your family that you want your organs donated after your death.
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Six Month Update

1/28/2014

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January 18th marked six months after transplant! I haven't been updating because there hasn't been much to update about. I did a follow-up interview with a local news station yesterday and it was so quick. I didn't really have anything news-worthy to talk about. :)
I recently had my six month check up, which just consisted of a blood draw and urine sample at my local lab. I'm waiting to get my GFR, but my creatinine was 1.2, which is just fine. My coordinator told me that usually at the one-year mark is when we'll see my 'new normal', it may fluctuate a bit until then. (Once I get that GFR I'll post with all my numbers before, immediately after, and six months after surgery.)
I really have nothing to complain about. I have felt back to normal for a long time now. My only 'issues' are cosmetic - still trying to get used to my large scar. I did have some ultrasound therapy done that loosened up the scar tissue quite a bit. Time and massage work will continue to improve that scar. Two of my five small scars are nearly invisible now. 
Teddy seems to be doing well! I haven't seen him in a long time, but Sarah is often posting about all the new things he's doing and getting into - just like any other toddler! 
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Three Month Update

10/19/2013

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Yesterday was three months after surgery! Although Teddy has had some health concerns the last few days, he seems to be doing okay. 
As for me, I'm doing pretty great! I have no pain, no fatigue, no regrets. :) I am having a bit of an issue with my large incision across my low abdomen. The right half of the scar is a lot 'tighter' than the other half, so it pulls in. It's not uncomfortable, I can't feel it unless I'm running my fingers over it, but it essentially has left a permanent 'muffin top' above that part of the incision. Losing some belly fat would help :) but I have also been doing some scar therapy to try to loosen it up. I am terrible at remembering to do the massage on a daily basis, though. A few times I have gone to a massage therapist to get some professional work done, which is really helpful (when I can afford it!). I think that with more work and more exercise, it'll get better.
I went back to lifting much earlier than was recommended, but have not had any issues. We had done some testing at the gym the week before surgery, and we re-tested last week. I am lifting more weight that I was before, but I'm slower than I was on the running drills. Not terrible though!
Last weekend I completed a mud/obstacle race that was a lot more difficult than I thought it would be - but with the help of my awesome teammates I made it through! When runners couldn't complete an obstacle, they were supposed to do thirty 'burpees' - towards the end I attempted to do a burpee and felt quite a pull on my incision, so I skipped them. 
It was tough and muddy and fun and a great celebration of three months post-surgery!
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How cute is he?!

8/28/2013

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Taken two days before our original surgery date. 
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Tips for Kidney Donors

8/28/2013

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I will probably keep updating this list as I think of things, and please comment with your own suggestions!


(In no particular order.)
Preparing for Surgery:
     Get in shape. (Ok, THIS tip is in a particular order. In my opinion, most important.) I fully believe that my quick and easy recovery is due to my physical health before surgery. While I wasn't at my ideal fitness level, I was the strongest and healthiest I'd been in my entire life. So if you're not exercising regularly and eating healthy, whole foods, start now. If you are exercising, amp it up. 
     Stock your freezer with homemade meals, especially ones that are great for the crockpot.
     Get into therapy. Whatever kind suits you - a licensed therapist, religious counseling, reiki, or just some good friends. Take the opportunity to voice your hopes and fears about surgery and recovery.
     Know that surgery may get postponed/cancelled. It can be a lot more devastating than you think it will be. Try to mentally prepare yourself for this.
     If you've got little kids, reconsider. My youngest is three, and we did fine, but I don't think it would have worked well if he were much younger. My boys were okay with me not picking them up, and being careful while snuggling on the couch. A toddler may not be as happy with the arrangement.
     Drink lots of water.

At the Hospital:
     If you have nausea when taking narcotics, talk to your anesthesia doc about it before surgery. Make a plan for it BEFORE you are actually nauseous. After asking me some questions about my  nausea (such as "Can you read a book in a moving vehicle?"), my doc decided an anti-nausea patch would probably be best for me. And, unless for some reason this time my body decided not to be nauseous, it worked really well for me. (And, when they tell you to wash your hands after taking it off, they really mean after touching it in general. I rubbed it while putting my hair up, and then rubbed my eyes. My eyesight was off for days!)
     Wear your own clothes. I changed out of my gown once my catheter was out. You'll feel more comfortable and more like yourself. I wore sweats with loose waistbands and tshirts. 
     Ask questions. Any that pop into your head. "When can I get this 'just in case' IV out?" "When can my catheter come out?" "When can I eat?" "What are these pills you just handed me?" "Why do I need that?" "What happens if I don't take that medicine?" I asked a lot of questions, because I wanted to know exactly what was happening and what medications I was taking and why. I refused some of them. I nagged and probably got my 'extra' IV out sooner than usual. I nagged and got to eat real food sooner than usual (because I was feeling up to it). I nagged and got a shower in sooner than usual. (I really wasn't nagging, I was politely asking, but I was clear in what I needed and why.) 
     Get up and walk. Even if it's just five feet the first time. It'll get easier each time. 
     Drink lots of water.
     


Recovery:
     Set up a mealTrain, or have a friend set one up for you. It is SO NICE to not have to worry about getting a healthy, hot meal on the table each evening. 
     Plan on wearing loose-waisted pants/skirts for awhile. 
     Have friends/family come over and help you with dishes, laundry, vacuuming, etc.
     Find a walking buddy, or buddies, to go around the block with you a couple times a day. It'll keep you accountable and it's more fun.
     Fill your Netflix queue. I have been watching a lot of 30 Rock. 
     Drink lots of water.
     Have cough drops handy. My throat was all scratched up from being intubated, and for several days I had a 'tickle' in my throat. And of course the more you try to hold back a cough the more you need to cough, so sucking on cough drops was really helpful.
     

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Six Week Update

8/28/2013

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I keep forgetting to post updates, which shows that things are really getting back to normal. I've been feeling normal in my day-to-day routine for a couple weeks now. Carrying laundry, groceries, etc.
Last Monday - so, about 4.5 week post surgery - I went back to the gym doing regular workouts. I am not using as much weight as I used to (about half my normal weight), but everything feels great and it's hard to NOT go up in weight. I still feel much slower than I used to be and I don't have as much endurance as I did, but that is coming back. I'm going to start training for an upcoming Spartan Race soon.
The nerve damage I felt on my left thigh is gone. I have a little numbness just above my large incision. I still have quite a 'bulge' just above the incision, which I was hoping was just swelling, but now I'm thinking it's just belly fat re-distributed in an unfortunate manner. Too bad he didn't just scrape some of that out while he was in there! 
I have not been doing a very good job of remembering to do my scar massage. I have gotten some resources for cesarean scar care and need to do that on a more consistent basis.
Teddy seems to be doing well, you can read about him on his mom's blog.
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Four Week Update

8/15/2013

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Well, it's been four weeks since the surgery! This week I've been a little...frustrated? I'm not sure that's the word, but we'll use it.
I think in the last week I've made the transition from lack-of-energy-due-to-surgery to lack-of-energy-due-to-not-moving. I feel sluggish, and was getting bored/annoyed at my workouts, because I feel like I can do more. Part of it is my fault, I think if I had been running more I would probably feel better, but I've had a hard time finding time to run since my kids are always with me, or it's late, or I'm working....the usual excuses.
I was getting frustrated at not being allowed to carry baskets of laundry around, carry groceries inside, etc. So, I admit, I've been 'cheating' since Monday. Not carrying really heavy things, but more than I'm 'supposed' to. I've picked my three-year-old up a couple times. And, next week, I plan on doing full workouts. Not using my usual weight, but more than I have been. (I'm being honest, and if later I develop a hernia or something, I'll admit my mistake!)
I'm pretty good at listening to my body, and my body is saying "Get back into it!"
I'm still a little swollen just above my large incision. I have been wearing jeans that were just a tad loose before surgery. They are pretty uncomfortable right out of the dryer, but Monday I wore them for eight hours before I felt like I needed to unbutton them! Other donors have told me their swelling took several months to go away, so I'm not concerned about it, just a little annoyed.
The 'sunburn' feeling inside my left thigh from nerve damage is 95% gone, I'd say. I'm not sure when it really diminished, but I just thought about it today and noticed it was all but gone. 
People have been asking me if I am back to normal now, and I usually say that doing my day-to-day stuff, yes, I feel normal. Only occasionally do I move a certain way and feel a twinge in my abs. And no, I can't tell that I'm missing an organ. :)
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What Happens Now

8/3/2013

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It's 2+ weeks from surgery, so what now? For me, life goes on as it was. I'll gain back my strength and energy, will go back to work, and - besides a few sports to avoid (probably no rugby in my future) and more detailed annual physicals - will live my life like nothing happened. I am already starting to forget (Maybe "forget" isn't the right word.  More like "not think about it 24/7."), and have to stop and think for a minute when people I haven't seen since surgery are SO interested to know how I'm doing. 
I probably won't post here much anymore, except for specific kidney-related updates. 
My short chapter in the story of Teddy's life is coming to a close. 
But just because this transplant is complete, doesn't mean that Teddy doesn't continue to need support. Your support.
Sarah recently posted an answer to the continuously-asked question, "Is he all better?"
As she explains, Teddy will have doctor appointments and medications for the rest of his life. He'll be monitored daily. He'll need to avoid certain activities, foods, environments, people. 
And as great as Lefty might be, it won't last the rest of Teddy's life. Transplanted kidneys last about ten years, usually. He will need another kidney someday. 
So, as the excitement of transplant wears down, remember that Teddy and his family still need support. Consider donating a few bucks to his account at the National Foundation for Transplants. Bring a meal for his family. Leave a caring note on his Facebook page. Support other families dealing with CKD through donations - monetary or your own spare kidney! Be a registered organ donor and make sure your family knows your wishes. 
If you are considering being a living organ donor, feel free to ask me any questions, and I will answer them the best I can. 
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Two Weeks Post-Op

8/1/2013

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Two weeks after surgery, and not much to report - that's a good thing. I am feeling better every day. Went to the gym again yesterday and even jogged halfway around the block. A very, very light jog. I was expecting to feel like my insides were sloshing around, but nope. My plan, for the next couple weeks at least, is to be at the gym three times a week, doing workouts created by my trainer. Will increase my walking/jogging at home.
I am definitely tired. Sometimes, exhausted. I haven't been napping this week, partly because my kids won't let me, and partly because the last few days I did nap, I then wasn't able to fall asleep til 1am or so. So by about 4pm I'm tired and cranky and my kids are driving me bonkers. Very, very grateful for the meals people have been bringing for dinner! 
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Follow-up with docs, and kidney function measurements

7/30/2013

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I drove to the hospital today to do my follow-up bloodwork and to have post-op consultations with the surgeon and psychologist.
The transplant program psychologist was ready when I got there, so I actually met with her first. Just a brief chat about how I felt about the surgery and the recovery so far. She asked if there was anything I wish they had told me that they didn't, and the only suggestion I had was to remind donors of the potential for transplant cancellation or postponement. It never even crossed my mind that we might be cancelled, until it happened, and I think that's important for donors to be aware of. Otherwise, I felt well-informed.
I had my blood pressure taken right after that, and it was high, so the nurse took it again later (with a manual cuff the second time), and it was back to normal. Blood work, urine sample.
Then I met with my coordinator and a PA that I hadn't met before - I'm still not sure if he was around for the surgery and I just never met him, or if he wasn't even a part of the surgery. He checked my incisions, then consulted with the surgeon, who then came in to meet with me and check my incisions himself. Not really sure what the point of having the PA do it first was...
A couple stitches from under the skin had popped through, but will disintegrate, so the doc just snipped the one that was really sticking out. He said the incisions were looking great. 
So then I started asking all my recovery questions - what specifically can and can't I do? He recommends a 5-pound restriction for the first six weeks, the other surgeons say 10 pounds. Yes, this includes body-weight exercises, like pushups and pullups (which I assumed, but thought I'd ask anyway).
Then they weightlifting conversation began. "Why do you lift weights?"
Uh...what? Because it's good for me. He apparently doesn't think weight lifting is a healthy activity. Whatever. 
I asked if after the 6 weeks, I can start easing my way back into lifting weights or if I should wait longer.
He asked me how much I lift, the PA (who seems much more supportive of strength training) asks, "Are you squatting, like, 130 pounds?"
Yes, or more. Cleaning 100 or more. Deadlifting 200 or more. (Ok, my MAX is over 100/200. Not my regular weight.) :)
"Oh. Well....you don't want to lift that heavy for awhile. If you're dead lifting 200 pounds, you're really putting a lot of stress on that abdominal incision."
The surgeon butts in, apparently hasn't been listening to our conversation before that, "Can you lift that much?"
Well, two weeks ago I could.
"Oh."
Anyway, more questions, more explaining, he lets me know that at 6 weeks post-op I'll have about 70-80% of my abdominal strength back, but it takes at least 6 months for it to get to 100%, so it's risky to lift too much before then. After 6 months, "whatever happens is going to happen." (Which I took to mean, "If you hurt yourself after 6 months, it's because weight lifting is bad for you and you would have hurt yourself anyway.")
I asked a lot of questions, not to be annoying or because I want to push my luck on anything, but so that I can understand exactly how my body will be healing so that I can create a plan. If it takes me a year or more to get back to where I was two weeks ago, that's fine. 
Asked about my kidney function and creatinine levels. He said that all my levels were what they expected, and my coordinator said it seems to take about a year for everything to get to where it'll be long-term. (Specifics about my levels below.)
I forgot to ask him about the nerve damage causing the 'sunburn' feeling on my left thigh. But, the area affected seems to be decreasing already, and my chiro said it can take up to twelve weeks to completely go away. 
I talked to my coordinator about getting all my lab reports and records from my hospital stay. They have a great online chart system, but none of my inpatient info had been posted. I brought a form requesting records, and she said she'd make sure the records office got it. I asked her to make sure I got EVERYTHING, including any surgery notes, nurse's notes, etc. Although I don't know a lot of the medical terminology, I think it's interesting to read and I want to learn about exactly how my surgery went, etc. So hopefully they actually send it all to me. 
Every six months for the next two years, I will get a letter/call from my coordinator reminding me to either visit her at the hospital, or see my primary care provider to get weight, blood pressure, urinalysis, and blood work. The information is kept for the hospital's own statistics, and is also sent to the United Network for Organ Sharing.

So, now for my kidney function levels:

The main blood tests referred to for kidney function are creatinine, BUN, and GFR. Donors should expect their levels to vary after surgery, as the remaining kidney will 'beef up' to take on about 30-50% of the lost kidney function.

BUN: Normal is 7-20. 2/12 (my initial testing) I was at 10, 7/18 (day of surgery) I was at 16, 7/19 I was 16. They either didn't test it today (7/30) or I just can't find it in the lab report. So I've remained normal there.

Creatinine: Normal for adult females is less than 1.2, although more muscle mass may make it a bit higher. 2/12: .8, 7/18: .9, 7/19: 1.3, 7/30: 1.1. So I'm already back to 'normal' for that. 

Estimated GFR: This is essential the percentage of kidney function one has. Normal is 90+, but it's only worrisome below 60. Again, body type plays a role in the numbers. 2/12: 85, 7/18: 74, 7/19: 48, 7/30: 59.

These are the numbers I'll have checked every six months for two years, then yearly. I will never have 85+ GFR again, unless Righty is a super kidney and grows like crazy. But if I stay below 60 (which I doubt I will, since I'm already up to 59), or if my creatinine rises, it's not an automatic sign of an ill kidney. It just means I have one that cannot do the job of two.


After my appointments I stopped in to see Teddy and his mom. He's had some bumps in the road but Sarah says that overall he's doing well. He was talking and singing and dancing and playing the gravity game ("What happens when I drop this over the side of the crib? OH! Mama picks it up and gives it back to me!") Catch up with him at Sarah's blog. 



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    I'm a 29-year-old mother of two, donating a kidney.

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