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



Remember this?
Found!

Its Friday!
This morning was the last Friday that I will be sitting in that treatment chair, hooked to a machine via two large needles in my arm. It feels so good to say that. For so long, there has been no light at the end of the tunnel. I've just accepted that being on kidney dialysis is my "normal." Its what I have to do to stay alive. And I definitely want to be alive.

Next Friday I will be out of surgery and hopefully having a fully functioning kidney. My new kidney will be working so hard - trying to clean out years worth of waste built up in my body. I am incredibly nervous - there are so many "what ifs." What if something happens before the transplant? What if the kidney doesn't work? What if, what if, what if.

If these last four years have taught me anything, it is that you can't dwell on the What Ifs. I have learned (with the help of my incredible husband Brian) that you cannot change what you cannot control. It has been a hard lesson, as I really like to control things. But my kidney failure was beyond my control. When my new kidney came was beyond my control. I've had to learn to let go and take what comes my way - good or bad. There has been a whole lot of bad - but now...the good has arrived. Thank goodness!

I am so overwhelmed by the amount of support that's out there. Friends, family and strangers alike are sending me well wishes and their positive vibes. Its incredible.
My little announcement video has over 700 views on youtube - that is so cool. I wanted to tell everyone at once and just didn't think I could formulate the right words - video is excellent for that.

Love and kidneys,
Emily

Well...here we go.

In one week - on Thursday, June 14 - I will finally meet the internal organ that has been facebooking and tweeting for the past year and a half. The internal organ that I've been waiting for for four and a half years.
This has been a rollercoaster of a year so far. Back in January, the transplant team at Barnes called and told me I was part of a large chain of donors. They found a match, which as most of you know was highly unlikely. Because of my crazy high antibody level, I would only be compatible with 3 out of 100 people. Getting that taste of being somewhat close to a transplant - it was a blessing and a curse. I was out of my mind excited. But then, the chain got broken and it seemed like the kidney that was a perfect match for me was yanked out of my reach. I went from pure elation to pure devastation. And...to make it worse, my family also knew and I think they were more upset than I was. I hated seeing that.

So when the transplant office called again a couple of weeks later to tell me I was in another chain, Brian and I decided to keep it to ourselves. I couldn't stand the thought of getting our parents excited again and then have to make that call that it didn't work out again. Good thing too...the second chain was canceled as well.

A third chain came and went, so when Barnes called in April to tell me about a paired exchange, I was very cautious. Only shared it with Brian and even then, we kind of just brushed it aside. However, this was a little different. This time around, it was just a paired exchange. So what that means is that there is an alturistic donor out there (someone who literally walks in to the hospital and says "hey, I have an extra kidney - any takers?") who is giving to Patient A. Patient A has a donor that can't for whatever reason donate to them, but is willing to donate to someone if Patient A can receive a kidney. Patient A's donor is a perfect match for me and is donating to me because the alturistic donor is giving to Patient A. This is all thanks to the National Kidney Registry. Show them some love: kidneyregistry.org.

So the call came mid-April and we went through some preliminary testing. That was all clear, so they said - let's schedule for June 14 and go ahead and wait until May 31 for final crossmatch and testing. So Brian and I had to patiently wait the entire month of May - not really telling anyone because of that fear of it falling through.

So last Thursday, May 31, we went in for final testing and appointments with the docs. Everything looked really good and yesterday I got final confirmation that all tests were negative - which in the transplant world is really great! Negative means no reaction between mine and my potential donors blood.

I have allowed myself to get excited. To enjoy the thoughts of freedom, thoughts of overflowing energy, thoughts of not pushing and pulling myself through my day, just to get home and collapse. My co-worker Erin told me something today that really made me reflect on all of these emotions I'm feeling. She said something along the lines of "we forget to enjoy the excited of things for fear that they will be taken away." That line has been resonating in my head all night and I am now bound and determined to enjoy this feeling, even though there are little voices in my head telling me to not be too excited because there are lots of things that can go wrong. I am choosing to ignore those and feel excited!

The next week will fly by - I only have three more dialysis treatments. THREE.
That means only six more needle sticks. Only 9 more hours of sitting in that awful chair. I can manage that - no problem!

As I always say...I'm one day closer to my transplant today than I was yesterday. And now...less than 7 days. Holy Toast.

Here is the video I made - http://www.youtube.com/watch?v=yRc2XKyXtuc

I'll keep you posted.

Love and kidneys,
Emily