And...We're Working!

Yup...EK is still working. I feel so lucky to have a rockstar kidney. Last Creatinine level (the amount of waste in your blood) was .98. For your information, "normal people" have creatinine levels of .5 to 1.0mL, so my one transplanted kidney is working as well as...well, YOUR TWO! Rockstar kidney for sure!


The last couple of weeks have been pretty good for me. I was having some residual pain over the incision, but it was mostly just the nerves reorganizing themselves - it wasn't so much as pain, but feeling like I had a rash or burn. That sensation has faded and I feel really great. I have some swelling in my abdomen still, which makes my work pants a little uncomfortable. And my energy level is still pretty low - walking around the block gets me pretty winded. I'm hopeful that I can soon start regular exercise and that will help not only the energy level, but also help get rid of the swelling.

This past weekend, Brian and I took the kids to our annual Lake Weekend with Brian's college friends. We've gone the last six years and it is always a fun weekend. This year was of course significant for me, for several reasons. First and foremost, this weekend was what I've been looking forward to since my transplant. I knew it would take time to heal and I knew that six weeks after my transplant I would be feeling good. I just kept saying to myself, I feel awful now, but when Lake Weekend gets here, I'll feel great. And I did. We had so much fun, even though I didn't go out on the boat. My skin is pretty sensitive to the sun and being out in the heat for just a few minutes exhausts me. So I got to stay in, relax, read and play with all the babies that have started to join us. Did I mention that our friend Brian fashioned a kidney skiing out of rice krispie treats?

Sunset at the Lake

So for those of you that don't know, today was my first day back at work. I have been sooo ready to go back to work - excited to see my stellar co-workers and start using my brain again. Six weeks of resting, healing and watching mind-numbing daytime television may have caused my brain to be put on pause. I'm ready to recharge and start my new "normal." A normal life that includes me feeling great and not having to deal with dialysis. Work went well. I feel pretty out of the loop...in the six weeks I was gone, our department moved locations, we hired 5 or 6 new people and got our second batch of summer interns. So I'm feeling pretty disconnected, but hopefully I can get right back into the swing of things.


Tomorrow is my first clinic appointment at Barnes. All my labs have been good, so I'm looking forward to a nice, easy appointment. I get labs once a week instead of twice and soon, it will go down to every other week and then monthly. I honestly keep waiting for someone to say "just kidding" and that I have to go back to a life with dialysis. I am so hopeful that this kidney lasts me long enough to "forget" what a life on dialysis is life.


Love and Kidneys,
Emily

Ladies and Gentlemen...Four Weeks Out!

Hi everyone!
Can you believe its been four weeks since Kidney Day 2012?!? EK and I are settling in to a nice rhythm...learning how to hang out together fulltime. I'm sorry for not having written in a while, but as I said in my last post...things haven't been all rainbows and unicorns.


So...to catch up...last time I wrote about the stupid drain and now I'm happy to report that they took it out last Friday. And boy, did I turn a corner last weekend! It was almost instant - as soon as they took that thing out, the pain that I had been feeling the past week was instantly gone. The day before, they took the stent out that was helping keep the connection open between EK and my bladder. It was causing me pain and the drain was non stop pain. So both of those out and last weekend was a huge sigh of relief. It has been so much easier to get up and down, in and out of bed and even walking. Sleeping was so much easier as well, I attempted sleeping on my side, but needed lots of pillows to support, but I'm happy to report that as the weekend and week has gone by, I'm able sleep on my side pretty successfully. EK is letting me sleep about 2 and 1/2 to 3 hours at a time now, which is so nice and I'm sure is contributing to my road to recovery. Sleep is so important!

My three childhood best friends got together on Monday...Julie was in town from Colorado and I haven't seen her since our 10 year reunion 6 years ago! So, since I can't really drive yet, mom and dad came to pick me up and drop me off at Jeannie's house. We kept joking about how funny it was that my parents were dropping off their 34 year old at a friend's house. It was such a nice time with those girls. I love that although we don't see each other as often as I'd like, we can fall right back into laughing hysterically at everything. I kept having to tell them to stop because I was laughing so hard it hurt my poor incisions! Thanks Julie, Jeannie and Tracy for making me laugh so hard I cried and for just being so awesome.

Speaking of childhood friends...one of my best friends in junior high and throughout high school was Candi Razer. I always looked up to her because she was such an great athlete and could hold her own with sassing any boys that tried to pick on us. We walked to school almost every day and afterschool we would head down to "Jack's" Convenience store and have pizza slices and just laugh. As usually happens, we didn't really stay friends after high school, but since facebook exploded and you can find almost anyone from your past, we have since connected. A few years ago, she even offered her kidney to me. I was so touched. Yesterday, I received two lovely letters that brought tears to my eyes. Her two kiddos, Ashley and Nick, both made me the cutest, sweetest get well cards and mailed them to me. It totally made my day and just shows me how their mother has done right by teaching them to care for people they don't even know...like me. Ashley and Nick...your lovely cards made me day and I can't thank you enough for sending them. Please hug your mommy for me.


So to summarize...I'm feeling really good - have even walked all the way around the block (1/2 mile!) and am starting to do stuff around the house, tackling small projects, like organizing recipes and going through old magazines. EK is still going strong and working really well. I've wrestled a couple of times with writing my donor. I've started and stopped several times. I just don't know how to put into words how I feel about what he did. How do you say thank you to a stranger that saved your life out of the goodness of their heart? I suppose that I can't really do that in a letter, but it will serve as a starting point for me to express how thankful I am.


Looking forward to several visits I have coming up and to getting out of the house on little excursions. Still taking it easy and being really careful. Want to make sure I heal nicely and am ready to go back to work at the end of the month!

Love and Kidneys,
Emily

Almost Three Weeks Out

Hello friends and family! I'm excited to report that I am feeling better than my last post. Pain has lessened to an annoying tingle and I'm able to move around much better. Getting up and down and in and out of bed is still slow and painful, but I have been able to do much more for myself (Brian's happy about this). I have been doing quite a bit more walking...I even walked over 100 meters yesterday. The longest yet. Now, the not so great news. Today I had my surgeon follow up. Everything is looking great, kidney working great and I'm healing up nicely. I've lost about 13 of the twenty pounds of fluid they put on me in the hospital. I was schedule to have the drain removed and I was so nervous they weren't going to take it out. This whole appointment filled me with anxiety because only tow outcomes would occur: a) they would tell me I had to leave the drain in or b) they took it out and I was nervous about that procedure (awful). Unfortunately they decided to leave the drain in. I broke down in tears. I just hate this thing so much...it is incredibly uncomfortable and painful and, to be honest, embarrassing. The doc and Brian both assured me that it is best to leave it in and in the long run, if it makes EK work better, than I'll be trooper. But I am taking this time to complain about it and I'm using today to feel sorry for myself. Tomorrow, I'll be courageous and stop complaining because I do believe that it's for the best. Doc told me they would take it out next Wednesday, but it's 4th of July, so they moved my appointment to Friday. So that's nine more days. I am definitely looking forward to a month from now, when I'll feel pretty close to normal. This has not been an easy road, but so very worth it. I feel so thankful for my NY donor and for the support of all my family and friends. Thank you every one! Love and Kidneys, Emily

One week out

Wow. I can't believe it's been a week since I met EK. I'm overwhelmed by the change, the outpouring of support, and quite frankly, the pain. I'm going to try to walk you through the last week...I intended to blog often in the hospital, but couldn't find the strength. Day One: Kidney Day! Thursday, June 14, was the day I had been looking forward to for four years. I was so overwhelmed that it was finally here. I had to be at the hospital at 9 am and meeting me there were: my parents, Maria and Mandi (EK's management) and of course, Brian and his parents. Also tagging along was my childhood friend Casey Nolen, who was doing a story on us for KSDK, the marketing department from Barnes with a photographer that was chronicling my journey as well. It was quite the entourage, let me tell you! It was quite a long wait as we didn't get called until about 1 pm. So we just sat around and chatted and Casey did interviews for his story. I was finally paged and got to bring two people with me to pre-op. Brian was actually sick and wearing a mask, so it just wasn't a good idea for him to come with me. It was so hard to walk away from him without getting to kiss him or even hug him. I know he felt awful about it too. So my dad and Brian's mom Carol came up with me, which was a good choice because they really helped calm my nerves. I got really anxious once I changed into my gown. We only had to wait about 30 minutes and they started administering the pre-anesthesia. Well that is the last thing I remember! My dad said as soon as they started that medicine, I was out. The surgery took longer than the 4 hours and my family was very nervous. It was a great kidney, but had some special things that the surgeons had to do to make it all work. I woke up in the observation unit in a lot of pain and a very sore throat. It took several minutes to take stock of everything...I had three IVs, a catheter, a drain, and inflatable leggings. The kidney was working and that was the best news ever. Day Two: Brian and my mom stayed the night with me. It was a restless night. Brian slept in the recliner and my mom slept on the couch...did I mention I had a private room? Awesome! Well we slept very little...I could really sleep and nurses and techs came in so frequently. My moms stayed up and we had a nice chat while Brian slept. They were urging me to drink, but I was so nauseated that I ended up throwing up. That was the worst ever. So very painful. The nurse came in around 6 am and told me to get up out of bed to be weighed. I said there was no way. She insisted and after about 15 minutes of inching my sore sore body out of bed, I managed to stand up enough for the to get my weight...which by the way was TWENTY pound heavier than normal! 20 pounds. Apparently they have to overload my body with fluid during the transplant and it takes a while for the new kidney to filter it all out. It was miserable. That second day wasn't that bad pain wise and I only used my pain button a couple of times that day. Brian stayed the night and we got a little more sleep, but alarms were going off all the time, so that was annoying. Day Three: Moved me down the hall to the regular transplant rooms. Again I got a private room, which is awesome. I went hardcore and walked all the way down the hall to my new room. I know how important it is to get up and moving and each time I did it got a little easier. Brian walked with me and I tOok it nice and slow. By this time, the kidney was going gang busters...producing over two liters...which is a lot! I feel so lucky to not only have this kidney, but to have it work so great right away. Not all are that lucky. That evening I started having problems with my catheter. I felt an uncontrollable urge to go to the bathroom, which shouldn't happen. And pain. Brian stayed until 3:30 am and then went me, got ready for his triathlon and got to the race for his 6:05 am start time. Day Four: Hell day Pain was unbearable today. I spent most of the day whimpering in pain, shaking, crying and begging anyone that came into the room to help me. I just wanted the catheter out, but they refused. They tried several different things and eventually by the end of the night, things settled down enough for me to stop freaking out.I know it was so hard for Brian and my parents to sit there and watch me suffer. I can't imagine. Brian stayed again and since we weren't on the observation floor we were left alone for longer periods of time, so Brian for sure got a better night sleep. I still tossed and turned and tried to deal with my pain the best I could. Day Five: Catheter OUT!!! So exciting. Helped with my pain, but that also meant that I had to get up and use the restroom all the time. And when I say all the time...I truly mean it. EK had me up every 30 minutes! And let me tell you, it's hard to get to the bathroom quickly. The problem is that my bladder has shrunk because of no use for the last two years (since my first transplant was removed). Docs said it is the size of a walnut. Luckily, your bladder is a muscle, so it will expand eventually to regular size. But it was literally every 30 minutes up to pee. Sat up most of the day and started eating regular food. Not much of an appetite, so I had to force myself to eat what little I did. The docs thought I could go home on Monday, but my white blood cell count dropped and they decided I should stay one more day. I was a little bummed, but was fine with staying one more night. Brian stayed again...for the record, he barely left my side. What an awesome husband. Day Six: barely got any sleep because of the up and down all darn night. It was exhausting. That morning I had lots of visitors telling me I was doing great and could go home. Mom and dad came to help and by about 3 or so I was out the door! I should mention that in the elevator heading down, there were three nurses with, all of whom started making googley eyes over Brian's veins. "I'd love to start an iv on you!" "oh your veins are beautiful!" I was like, hey, I just received a life-saving transplant! It was funny and somewhat typical...Brian is always stealing my thunder! HOME: we came home to a decorated front porch courtesy of Max and Phoebe and Carol. It was so sweet. I was exhausted and getting up and down from the couch was harder than the hospital bed. Yesterday was a pretty painful day...I'm very anti-pain meds, so I'm trying to go at it cold turkey. They also make me itchy. I slept for a while and spent most of the day in bed. EK was allowing me about 45 minutes to an hour between "breaks" so that was nice. During the night time, I was able to go about an hour and 45 minutes, which allowed me to get a good chunk of sleep. This morning home health came and were here about two hours. It is really nice that they provide that service because otherwise, id have to venture out to a lab twice a week to get blood drawn. Brian's sister Shelley stopped by for a visit and brought the most beautiful flowers and magazines. I am still in a good amount of pain, but have been sitting up all day and walking around the house every time I use the restroom. I think Brian and I will try to take a walk around the block this evening after it cools off a bit. Special shout out to my co-worker Caitlin for giving me the most comfortable lounge pants ever! I'm off to make myself some comfort food from my childhood...hotdogs and beans. It reminds me so much of home and is something I haven't been able to eat the last four years! Yum! Sorry for the long post, but wanted to catch you up! Love and kidneys, Emily

I'm breaking up with you...

Dear Dialysis Machine,
I'm breaking up with you. You have only one redeeming quality...you kept me alive for the last 4 and a half years. Other than that...you suck. Literally.
I hope you know that I will not miss you and I hope that all your future (and current) girlfriends break up with you too.
-Emily

 ONE MINUTE LEFT!

Today was my last treatment. It is amazing to write that and amazing to feel like a weight is lifted off my shoulders. Brian took me today and his parents and my parents both joined us for a celebratory send off. It sure did make the time go by quickly to have everyone there...and Brian's mom Carol rubbed my feet, which was awesome. I'm hopeful that there will be many foot rubs in my future!

You won't believe this irony...I've been freezing to death and complaining about how cold I am at dialysis - I have to pile large blankets on myself to keep myself from shaking. Well, today, we arrive and guess what is waiting in my spot? A brand new heated, massage dialysis chair. Yes. On my last day.
Ironic.

We got bagels and cream cheese for everyone and after my treatment, I left. It felt so good to walk out those doors. Didn't even look back. I can't tell you how wonderful it feels to know that I get to sleep past 5 a.m. I get to actually have a huge drink of water. I'll get to eat potatoes and cheese and drink milk and all kinds of wonderful stuff I couldn't have while on dialysis. All because a stranger is giving of himself to help make my life better. Its a truly remarkable thing.

Here is a little video we did: CHECK BACK - HAVE TO EDIT
Today is going to fly by - trying to wrap up work stuff and then packing up tonight.

I just feel so thankful. And happy.

Love and Kidneys,
Emily

Feeling the Kidney Love!

Wow. I'm feeling the Kidney Love!
Last night, long time friends Julie, Amanda, Jodie and Danielle came over for dinner and girl talk. Jodie brought her simply adorable daughter Miss Darcy Parker (you must say her entire name because it is too darn cute!) and we had the best time. Even though we don't see each other as much as we used to - we can easily fall back into talking and laughing the night away. I had the most fun watching kitten videos with Darcy - she loved them as much as I do. {For reference, please check out "kittens inspired by kittens" on youtube. It makes my heart happy.}

My last Monday dialysis treatment was just like usual. Of course, the Chicken Sandwich girl sat next to me today. There is this girl - a young girl - that eats a chicken biscuit every time she is at dialysis and the sandwich stinks. It probably doesn't stink, its just an unexpected smell in a small space that is supposed to smell like bleach and clean.I don't know why they let her eat that every time - its awful. I've complained, but they don't do anything about it. But you know what? That is the LAST time I have to smell her smelly sandwich. Because only ONE MORE treatment for me! Yup - Wednesday's treatment is the last one before the transplant on Thursday. It feels so awesome to type that!

After dialysis, it was off to work - we had a full day of meetings and I had to leave early for one last doctor's appointment before the big day. The best part about today was happy hour - several of my work friends wanted to go to dinner and so we met at Houlihan's. Trish, the Caitlins, Steph and I stuffed ourselves with spinach dip and nachos and the awesome people at Houlihan's gave us some free desserts in celebration of my upcoming transplant. (We had told them we were celebrating my transplant!) The best part, however, was Trish's surprise - she made us "I kidney NY" shirts in celebration of my upcoming kidney coming from New York. The shirts are amazing and these girls, and everyone I work with for that matter, are amazing.

The days and hours are dwindling - only two more full days.

Is it possible to be incredibly nervous and incredibly excited at the same time. Because I'm pretty sure that is what I'm feeling!

Love and Kidneys,
Emily

My last weekend as a dialysis patient

This was my last weekend as a kidney dialysis patient. Its very strange to type those words.
I'm still a little in disbelief that this Thursday, a kidney will be flown in from New York and be my lifesaver.

Yesterday, Brian and the kids and I drove to Cape Girardeau to help out with a service project for The Mission Continues. There were over 150 volunteers and we got a lot of work accomplished. It was fun to drive around in my old "stomping ground." That's pretty much where I grew up.

After we were sufficiently covered in black paint (please note Phoebe's shirt in the photo...) we headed back to St. Louis to Brian's parents house where we visited with his sister Lynn, in from K.C. and his other sister Shelley and their families. It was a nice relaxing evening - its always fun to watch and listen to the cousins playing - they get along really well and like spending time with each other. I was pretty tired, though and pretty much crashed when we came home.

Today has been a truly lazy day - for me anyway. I just couldn't find any energy today, so I have pretty much laid around all day. I sure hope that my new kidney will bring with it the energy to do everything I want to do. I can't wait to actually have the energy to keep up with Brian and the kids. That is one of the 1,456 things I'm looking forward to.

These next few days will go by really quickly. My mind has been wandering to those nervous and anxious places - asking all those "What Ifs" that I keep trying not to think about. I'm starting to get really nervous about the surgery itself, which is a little silly given that a) I've been through this before and b) I've been through ALOT of other surgeries and illnesses, so this shouldn't be anything to get nervous about. I think its just the "anticipation" of the pain and struggle. My boss, Eric Grietens talks about that is his book - about the fact that many people let the fear of something consume them rather then the actual thing they should be fearful of. He talks about when he was in Navy Seal training and they had been through several days of Hell Week and they were lined up on the beach and watching the sun set. The leaders started screaming at them about how they were going to have to run miles and carry heavy sacks and logs. Eric talks about how at that moment, when all they were doing was watching the sun set, many of his fellow trainees dropped out. Not when they were actually running, or battling the ocean waves in a swim or completing drown proofing. They quit while watching the sun set. Because they were letting the fear of things to come consume them.
I've used this anecdote alot in the past few months since I read Eric's book. Its helps me place my fear of things in their rightful place. Recognize your fear and what you are afraid of - let it in.
So I'm letting the fear in and trying to control it.

Love and Kidneys,
Emily