Archive for October, 2013

Kidney donation

Monday, October 28th, 2013

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As many of you know I donated my kidney to a stranger after  I told our local news 8 some time back that I would. And because Hubster had already donated his kidney to a stranger a year and a half ago I had already asked all my questions and seen with my own eyes the entire process. I consider my chain just a longer extension of his chain since I never would have even given a second thought to kidney donation if not for him exposing me to it and educating me on it. It took about seven or eight months of tests and meetings to be able to donate and have a chain set up. After realizing that my children didn’t need a kidney and odds were they never would, we decided that rather than saving a kidney they had less than a 1% chance of ever needing, we’d instead do something better for them: give them a world where people donate life to others. That (surprise to us) made us the first couple in history to do this.

(If you’re considering this at all please go here and click on “I don’t have a recipient.”)

I thought I’d write out my recovery experience for anyone thinking of doing this. As you all know I’m a total wuss and hate medical stuff. Also I’m not tough and during the very first blood draw to determine if I was eligible to donate I passed out. Yeah. Woo. So if you’re a wuss like me, fear not! It’s not that bad. Word to the wise: Lie DOWN when you get blood draws. TAKE your meds. DON’T eat like a pig. And DON’T watch Pete Holmes videos people post on Facebook right after surgery because your belly laughing has consequences! (Rob!) You’re welcome.

Timeline:

Monday – My surgery happened around 4:20pm. The last thing I remember before surgery was the anesthesiologist putting something in my IV and saying, “This will help you relax.” It did. I shut my eyes and relaxed, but a few minutes later I felt my stomach in knots. I thought it must just be stress or something, but I started to tell the nurse that I probably shouldn’t go into surgery right now because my stomach felt weird and achy. Well (haha) it turned out the surgery had already happened and that’s why I was sore. Yeah like four hours had passed. That was some good stuff in my IV.

Mr. Kidney was driven up to L.A. and sent on a red-eye flight to New York while I slept.

Tuesday – Mr. Kidney was successfully placed in his new home early the next morning. He started earning his keep right away by producing urine and adding an average of 15 years to the recipient’s life.

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Back here in San Diego I was doing pretty good. I was up and walking and on mooooooorphineeeeeeeeee. (It was for my shoulder, randomly. They gave me morphine and then asked if I still felt pain. I was like, “Pffff I don’t careeeeee! Weeeeeeeeeeeeeeee!!!”) We were told that the local media was going to come, but our coordinator cancelled it. I was just as happy to sleep. (PS: Mooooooooorphineeeeeeeeeeeeee! It was literally a good memory.) I also walked for like two hours straight that night because I could.

Wednesday – Check out day! Upon being woken up I was told I would be discharged soon and, by the way, two camera crews were here! And more were coming! The media thing was back on and, like, right now! And EVERY local station was coming! I jumped out of bed (like a granny) and washed my hair and put on real clothes. I was surprised how I could move around and was relatively fine after just having surgery. This was my first laparoscopic surgery and I recommend them over regular surgery. 45 minutes later a bunch of cameras and nicely-dressed people came into the room. We were all laughing and joking when someone said, “How does it feel to be the first couple to do this?” And I was all, “In San Diego?” And they were all, “No, seriously, the first ever!” (Which translated as “the first couple to donate through the NKR to strangers,” not, like, the first people to ever donate kidneys.) Charley and I high-fived. Then we talked about how everything we try to do is because God did it first: we love because he loved us, we give life because he gave us life, we adopt because we are adopted by him, etc. That’s paying it forward. We also talked about arthrogryposis (Hall’s contratures) and how we need funding and awareness. We talked about so many other things we’d rather be known for (seriously, our 15 minutes of fame came from lying on a table, woot), but we have since learned to stay on message: kidney donation = good. Sharp Memorial staff spoke about statistics, the odds someone in your family would need a kidney only you could provide (see my Q & A here) and I mentioned how easy this was. I do regret saying that surgery was so easy. (That was you on morphine, precious.) About an hour later I was home! That night my dad grilled up some ribs. I got a throne bed made out of pillows. My children were presented before me already washed and dressed and homework-ed. :) Life was good. I was queen.

Thursday – I got a phone call that all 7 kidneys in my chain had been successfully transplanted. That means all 14 surgeries had taken place since I kicked things off Monday night. Wow. And between Hubster and I, ten lives were saved and possibly one more kidney may come to San Diego on top of that as a bonus because we started a chain. It was an incredible feeling.

[My favorite article about our donation chain comes from the LeTourneau blog because it gives the numbers for the US. 96,645 people waited last year for a kidney. Only 16,812 got one, and of those people only a third got one from a live donor which lasts much longer (adding priceless years to their life) and takes better (rate of successful graft skyrockets). Of the enormous need, only 165 donors gave to strangers. 4,903 people died waiting.]

{As those of you who knew my mom and how her life was abruptly ended at 39 years old, I can’t tell you how priceless, utterly utterly priceless, 15 more years with her would have been. Live donors add more years to a recipient’s life than deceased ones. That’s why we’re doing this now as opposed to just offering our bodies upon death.}

I was only out of the hospital one day and already I was taking longer and longer walks. Rolly would grab my finger with his little fist, say, “mon!” (come on!) and walk me like a pet. It was cute. And I was also able to get out of bed and put my socks on by myself. I wanted a trophy that said “sock master.”

That night we went out to a family dinner with my cousin Laura (who is donating her kidney next month), James (the guy getting her kidney) and James’ entire family (who made the dinner). We got invited because I was the one who shared James’ need for a kidney on Facebook and that was the magical “share” that Laura pounced on. Yes I get credit for just sharing on Facebook. (It’s amazing what a share on Facebook can do!) We had excellent food and company, although I felt all the bumps in the road on the drive over. It was trippy that I’d just had surgery a few days before. My husband wanted so bad to just help me into my chair or something but I was all “I got this” and stuff. I also ate a ton.

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Friday – We found out our local story went national. We were floored. And friends kept finding us all over the Internet and on their local news stations.

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That morning I gave a phone interview to Yahoo! Shine and then the Huffington Post picked it up. We were living in full-on bizarro world. Advocates for kidney donation were eager to get as much exposure as possible. (The producer of the Queen Latifah show called my cell… twice. I was totally fan-girling.) Then we got a call from Fox and Friends who asked if we could come on the show THE NEXT MORNING. At first I said no since I’d never seen the show (we don’t have television at home) and we only knew it was connected to Fox News in some way. But after talking about it we realized it was the kind of exposure we would want for kidney donation, gosh especially if we were on the waiting end for one. Plus it was the first national news to take us live instead of just replay a local news’ edit of the interview from Wednesday. And I’m glad we did.

Saturday  – I took off this weird patch behind my ear in the shower that morning. It was a nausea patch. It was an hour later that I realized why the patch was important. Oh dear Lord why did I take off the patch? Why?! I’m very prone to motion sickness. (Did I mention I pass out when I give blood?) I seriously have the weakest constitution for a healthy person. My digestive system was also not quite awake since surgery. I don’t eat much meat regularly, but I had had FOUR meat dinners in the last four days. I’m a genius. The studio had sent a car which showed up at 5:20am. And the trip downtown only took 15 minutes, but it was enough. I was car sick. Then the live interview started. Click here to see it. I remember feeling fine during it, like on a natural high from being terrified of millions of eyes on me, and then it ended with the disembodied voice of Anna Kooiman saying goodbye and then I was off to bed to let the nausea run it’s course. It was also at this point I decided that I was done with my prescription meds since I wasn’t in pain, it was just the nausea bothering me.

And I kept getting teased about glow sticks… oh wait let me back up. So a bit before my surgery my brother-in-law had his own surgery to remove his gallbladder. We had teased him about how he possibility could have gotten so sick that he needed surgery and determined it was from chugging glow sticks. (A natural conclusion.) I even drew hilarious (because I’m hilarious, obviously) cartoons depicting his situation.

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Yeah so during the next several days of my off-again-on-again nausea the joke was that I had also been chugging the glow sticks. I deserved it.

This whole recovery I have not really felt a lot of pain where the surgery actually took place, in my gut. My biggest pain for the first few days was in my shoulders, particularly my left shoulder. I guess they fill up your tummy with gas so they can see around in there and sometimes the gas can settle in your shoulders. But in rare cases like mine it’s like a stabbing pain if you move just right. No body told me my shoulder would hurt like this! And by “no body” I mean a nurse, the coordinator and my doctor… twice, they all told me it was a possibility. The whole Sharp Memorial Hospital team educates you about everything, even stuff you don’t want to know. So… what was I saying? Oh yeah, NO BODY told me this would happen. ;) Okay maybe I just didn’t listen. My two lovely morphine requests in the hospital were for my shoulder and only for my shoulder until the gas settled in a couple days. So once the shoulder felt better I was like, “Won’t be needing these anymore! I am so smart!” And out went the pain meds. I don’t know what I was trying to prove. It didn’t feel good for like three days because of that little stunt.

But a few days later (one whole week after surgery) I was feeling pretty darn good. I would occasionally feel nauseated by overeating, which I did a lot of. I really did nothing but eat. Why did I overeat so much? It was always comforting and then I’d regret it. But even so I lost five pounds. ;) Surgery winning!

There was one day, randomly, in my second week of recovery, where my left side started to ache slightly where Mr. Kidney had been. It was this very slight, hallow ache. I think because I wasn’t feeling the nausea and I wasn’t feeling pain, all that was left to dwell on was this little constant empty ache. And then that ache started coming with this psychological feeling of loss. Not that I wanted my kidney back or even regretted the surgery, but I just felt emotional for that day and rubbed my side a lot. Once the ache went away I was over it.

Now it’s been exactly two weeks since surgery. My new abilities include being able to sneeze without my tummy going numb from the jostle, eating whatever I want without nausea and pretty much going back to normal life in every way. (Yay driving again! Yay making out with Hubster!) The only thing they don’t want me to do is weight (read: kid) lift for another two weeks. Even though I picked up my son during that appointment making the doctor say, “I’m going to pretend I didn’t see that.” Then I asked if I shouldn’t change any diapers for the next six months, just to be on the safe side. Dr. V said, and I quote, “Oh no diapers for two years, minimum.” Haha!

So two weeks out I’m feeling great. I’m back to my old self, but very tired. My energy has been zapped and I’m out of shape though. Not that I really worked out before, but lying in bed so much has made me flabby and weak. I went out tonight for a few hours with friends and when I got back I slept for a long time. I’m the queen of naps. And playing with my kids wears me out a ton. Thankfully, the grandparents have taken care of them for the first two weeks and now Uncle Bolt is helping my husband take care of them for the next several days. I have done some parenting, but mostly they’ve been fed, bathed and sent to school without my help. It’s been lovely. I already miss grandparents and want them to move back.

<Update> Since I forgot to post this I’ll add a bit more. It’s now been three weeks exactly since my surgery. Here’s what my surgery scars look like. (I’m sucking in so hard for this picture.)

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It’s easy to see since I’m so white. There are two dots on my left side and one in my belly button. (The red dot above my belly button is a mole.) My hubby had the same thing, only his belly button incision was more noticeable because they pulled his kidney out through there. (Yes, kidneys are that small and only weigh a few ounces.) For me, they put the camera or something in my belly button and pulled the kidney out of my C-Section scar. Based on Hubster’s rate of healing I expect the redness to fade and the marks to be mostly gone not to long from now.  His belly button went back to normal too.

Last Saturday our story went International and we were welcomed to a live interview with Weekend Sunrise, a morning show in Australia. To see the interview go here. I had a slight cold but you can’t tell. I mostly never know what to do with my face, and Charley has to remember not to be a robot so we have the TV nicknames of Twitchy and Zombie, which I feel is perfectly on display in the screen grab below. ;)

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Ha!

Australia doesn’t have donor chains, but they do have one-to-one donation and also donor swaps which involve, if I remember correctly, two donors and two recipients. They also have around the same percentage of donors  per year that we do. So the same awareness we need here they need there, but in both our countries the numbers are on the rise! Hubby was even able to explain how a donor chain worked so maybe they’ll adopt that practice! Who knows. It’s exciting though!

So now life is back to normal and we’re all just counting down the days to when my cousin Laura flies in from Tennessee with my Aunt Linda and Uncle Bud so she can donate her kidney too! Exciting!

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Again if you are interested in getting more information about this process go here and click on “I don’t have a recipient.” You are under no obligation, but you can get your questions answered and get lots of info. It goes without saying that there’s a major need and if you think you can fill it that would be wonderful.

 

AMC Mini Meet Up and Day Before Surgery

Sunday, October 6th, 2013

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Face painting by Madison

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Laelia, Roland and their friends

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AMC only picture

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Barbara

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Big accessible playground and Rolly just wants the toy cars

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Willow was yelling at him, it was adorable

Well I thought I had a bunch more pictures, but I don’t. Anyone with pictures send them my way and I’ll probably get them next week! We had a lot of fun and the kids really enjoy seeing other people like them. They do not, however, enjoy the five hours in the car. Laelia was good, Roland was a crazy screaming monkey pants. He especially hated when I sang along with the radio. :) I told him I feed on his displeasure. Yummy yum yum yummy yum.

Roland for the first solid 30 minutes in the car: “Mama doing? Doing Mama? Mama? Mama doing? Doing? Doing?”

Roland after 30 minutes in a car: “No Mama! Noooooo! Noooooooo! No Mama! NO!”

Me: “What do you want Roland?”

Roland: “Out.”

When we had the ocean in view I said to my husband, “The ocean, she calls to me.”
He replied: “If the ocean is saying, ‘Mama doing? Mama doing?’ I’m hearing it too, and I don’t think that’s the ocean.”

Oh and another funny story. While we were out I asked my dad to plant this one tree out of the ten trees in the front. There was this pipe in the way so I hadn’t gotten around to breaking up the pipe. It was old, was only six inches under the soil so it wasn’t important. And it already had holes in it so it hadn’t obviously been used for a while. Well guess what. Yep, he broke right through that pipe. (Yay!) Which had cables in it. (Uh oh.) Which took out all the cable and Internet access for us and our neighbors. (Boo.) A guy from Time Warner came out (today, Sunday, a few hours after the incident) to figure out what the heck happened. Dad handed him the pipe and asked, “This one yours?” Yep. So they dug up the pipe and put a temp fix on it.

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So my tree still isn’t planted and they may have to rip through the rest of my trees to bury the cables deeper. Ugh. We saved up forever to buy these darn trees and it took tons of work to level that area with a shovel and plant them. They are the only plants I haven’t killed too. It makes me want to cry. Save the trees! No Internet for anyone! :)

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Oh and we have great news! Yesterday Grandpa installed a new toilet that is several inches lower than a normal toilet and a bidet for it too! Now Laelia can get on the toilet ALL BY HERSELF!!! For the first time in her life. And that bidet makes her laugh hysterically every time. :)

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The blue and pink thing is six phone books duct taped together. The adaptive PE teacher made that for her. She can get on the toilet herself only when using that to step up.

Seriously she learned this trick two days before I have a surgery where I won’t be able to lift her onto the potty for weeks. Her timing is not my timing, but I’m so thankful she did it. And this will really help me care for her after I recover a bit.

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And Grandpa is also building a ramp to get to the garage. It will get done after I go to the hospital so my only picture is of boards lying around. This is the last space in our home that’s not accessible. I don’t know what the kids would do in the garage, but now they’ll be able to get to it. Maybe I’ll make them sweep it. :)

Well I just drank an entire bottle of laxative. So I need to… um… go… now.

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Surgery tomorrow!

I’m ready!

Double Birthday Fun!

Saturday, October 5th, 2013

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Laelia cut her own hair.

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And the lady at Supercuts evened it out for her birthday. (It’s short, y’all.)

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Grandpa and Grandma drove the ten hours down to stay with us for a couple weeks.

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They wear the kids out. :)

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And they bake the kids cakes!

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Hand-decorated by Grandma

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Birthday hair band

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On the go!

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Wink

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“It’s my party and I’ll cry if I want to.” Whiny boy was cold. Mama didn’t mind all the cuddles to warm him up.

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Presents!

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More presents!

Tomorrow we drive up to LA for the AMC mini meet up! Can’t wait to see all our AMC friends!

These last several days were nuts. In the the last 12 days and next two we had/will have:

1 ministry fair
1 major all-day metabolics clinic we waited 8 weeks to do, with testing
2 visits to the orthotist
1 battle with insurance over a shoe lift
2 school meetings for Roland since he no longer qualifies for Head Start because of his diagnosis and we have to transfer him
1 meeting with regional center (2 hour psych eval for Roland, he’s now testing at 26 months old, he’s three)
1 wedding
2 trips to AWANA with verses memorized
2 ball games (Miracle League) for Laelia
Cleaning the house for 3 visitors coming to stay with us
1 blood draw and doctor’s appointment
3 special writing projects
1 trip to Laelia’s school for her citizenship award
2 trips to Sharp to meet with doctors
1 Compassion Int. conference where we worked the booth
1 AMC meetup in LA
1 double birthday party for both my kids
2 orphan blogs due on the first
1 giant fundraiser with multiple vendors that I’m organizing

And of course my surgery is Monday. I’m donating my kidney to a stranger same as my hubby did a year and a half ago. Kids will hang with their grandparents while I’m recovering the next couple weeks.

Then naps for everyone!