I'm still alive!!

Wow, I can not believe it's been almost two years since I last updated my blog! I can't tell you how many times I meant to do, but then I would get busy and it would get pushed to the bottom of my to do list. I'll explain more about this later, but I'm currently mentoring someone who is in the process of trying to become a living donor. I shared my blog with her so she could get an idea of what all was involved with the testing and so she could learn more about my experience. I got a text from her after she read it, and she told me that she shared my blog with her boyfriend. He read my last post, which said it wouldn't be my last, and then saw I hadn't posted since. He panicked and thought I died, which caused him to panic about his girlfriend donating and dying!!! That was definitely not my intention when I signed up to mentor his girlfriend! I guess that was the motivation I needed to finally get on here and post an update. If her boyfriend is reading this, I promise I'm still alive and all is well, and she will be just fine too!!! So, it's obviously been quite a while since my last update. When I last posted, I was a month out from surgery and I was still adjusting to my new normal. I'm sure there are a lot of details that I've forgotten about since it's been so long, but I will try to fill you in on the things I remember. August 2015: In August, I had my 6 month follow up appointment at The Mayo Clinic. I had a bunch of blood drawn, had to give a urine sample, and had to do a renal clearance test. After that I met with a nephrologist and also with my donor coordinator. Everything looked good for the most part, but my remaining kidney was not picking up the slack as well as the doctor would have liked. I think I was only around 42% function, which is not much more than what I had right after surgery. They like you to be around 60-80% after 6 months. It wasn't cause for alarm, but if my function wasn't higher by the time my 1 year follow up came around, then they might start to get concerned. My incision had healed just like it should, no hernias, no other issues...so I was all good! October 2015: In October, I was finally able to meet my recipient Todd! He and his wife live a couple of hours outside of Chicago, so I flew to Chicago and met them there for the weekend. I was a little nervous to meet Todd and I wasn't really sure what to expect. Would things be awkward? What do you say when meeting someone who has a part of you inside of them? All kinds of things were running through my head. Luckily, it was not awkward at all! They picked me up from the airport, and as soon as I got in the car it was sort of like we had known each other forever and we were just old friends catching up. We had a great weekend! There was lots of eating, shopping, a few drinks here and there, and lots of fun since it also happened to be Halloween. We had originally planned on running a 5k while we were there, but that morning happened to be cold and rainy so we chickened out halfway to the race and went back to the hotel instead. All in all, it was a great weekend and it was nice to spend some time getting to know Todd and Jennifer. February 2016: It was technically a few weeks early, but in February I had my one year follow up at the Mayo Clinic. I couldn't believe it had already been a year! I had the usual urine and blood tests as well as the iothalamate clearance test. I even gave some extra blood for the Biobank to be used for research at Mayo. All of my results were great! My creatinine was 1.3 (it was 1.0 the day before I donated) and my kidney function was at 69%, so there was no longer any concern there! My incision healed normally and overall I felt great, so they sent me on my merry way until my two year follow up. Speaking of my two year follow up, since I am waaaaaay late in posting this update, it's almost time for my follow up! I promise I won't wait so long to update on that. :)  Overall, my first year after surgery was great! I got really lucky and had a pretty easy recovery with minimal side effects. I ran my first 5k (without having to stop and walk) about 3 and a half months after donating. That was a HUGE accomplishment for me!  Over the last few weeks, I've had a lot of exciting things going on related to this whole experience...but I can't share all the details quite yet! ;) Soon though, I promise! One last thing before I close out this update. Remember that picture of my kidney that I had requested during my surgery, but it seemed like I was never going to get it? Well I finally did!! Here's my left kidney in all its glory! 

One Month

I can't believe it's been one month since surgery! It seems like it was only a week ago. I have a lot to fill everyone in on, so just be warned this post is really, really long! I tried to break everything down by days, and I'm sure I missed some little things, but here it is!

Tuesday, March 24th:

When I did my last post, I was hanging out in my hospital room, had just started my "sparkling laxative" and was relaxing. My friend Caroline surprised me and stopped by to visit, and she insisted on creating a video. Of course she decided to come and do this right after I took all my make up off and changed into my hospital gown! :)

http://youtu.be/Nwz_Eq40I0A

The guy you see briefly in the video was my nurse, Ken. He was there that whole night, and he was awesome! He is Filipino, so we were talking about the lead singer of Journey and somehow we started talking about lumpia. He was raving about it. I had never had it, but it's some type of egg roll. Ken also gave me a kidney pillow, and a liver one too. He gave me the liver pillow in case I ever have too much to drink and need an "extra" liver, haha. The pillows have a marker with them so people can sign it, and you can use them to protect your abdomen after surgery. I've seen them in pictures, so I was excited to get mine!

Around 9pm that night, I had to change into the hospital gown and had an IV started in my hand. That actually hurt quite a bit, and made me a little light headed, but I was ok after a little while. I wasn't allowed to have any food or water after this point. I was getting kind of nervous at this point, because the laxative hadn't kicked in yet, and now I was hooked up to an IV so if I had to use the bathroom I would have to get someone to come in and help me. Not an ideal situation if all of a sudden you have to go. Every time he would come in and check on me, I would ask when it was supposed to start working. He said sometimes it takes a couple hours. A few hours passed and it still wasn't working. He paged the surgeon to see what they should do, and she said if I go, great, but if I don't it's not a big deal. Between people constantly coming in to check on me, worrying about the laxative all of a sudden kicking in, and not being able to figure out how to turn the TV off, I did not get much sleep that night! 

Wednesday, March 25th:

I don't remember exactly what time it was, probably around 3am, the party was ready to get started! I had all kinds of people in and out of my room. My mom, dad and sister arrived. I had to wipe my entire body down with these weird wipes and change into a new gown. A word of advice to any females having to use these wipes: don't wipe your private area with them, unless you enjoy a burning, stinging sensation down there! Remember the laxative I drank the night before? Well it decided to finally kick in about half an hour before they took me back for surgery. I guess that's better than spending all night doing it! 

Dr. Perry, my surgeon, came in to go over final details and sign her initials on my left side to make sure they took the correct kidney. 

After that, it's all kind of a blur to me until I got to the operating room. All kinds of people showed up to take me to the OR. I feel really bad, because I wanted to make sure I gave my parents & sister a hug and tell them I loved them, but I honestly don't remember if I did. At that point, I was freaking out inside because I was afraid I was going to have to poop while they were taking me to the OR and I didn't know what to do if that happened! It sounds silly, but that's exactly what I was thinking about that at that moment. 

It was exactly 5am when they wheeled me through the doors of the OR. They warned me ahead of time that the room would be really cold, and they weren't kidding! They started putting warm blankets on me right away. They transferred me from my bed to the operating table, which was really lumpy. They taped some sort of sensor to my middle finger on my left hand. I'm guessing it was to monitor to my heart. I had to state my name, date of birth, and tell them what I was having done. I think throughout my hospital stay, I said my name and birthday at least a hundred times. The anesthesiologist was saying that they usually joke and tell people it's so cold in the OR because they need to keep the meat fresh, but this time that was actually true! Dr. Perry leaned over me and told me she hoped I wouldn't remember him saying that, but of course I did. Then they put the oxygen mask on my face and told me to take deep breaths. The anesthesiologist put his hands over the mask to make sure it fit tightly on my face. Someone said "ok, this is going to sting a little bit." I assumed they were getting ready to put in another IV or something, but then I could tell they had started pumping the gas. I remember taking two, maybe three breaths and then I was out!

Since I already had a room at the hospital, my family was allowed to stay there while I was in surgery so they could relax and have more privacy. One of the nurses or assistants in the OR had my mom's phone number so she could call her with updates. My mom said they called her around 5:45am to tell her they had started the surgery. Todd's wife was also having her surgery in Rochester around this same time. I can't even imagine how Todd felt, having his wife and his donor going through surgery at the same time and knowing that by the end of the day he would have a new kidney!

I think my mom said it was around 9:00am that the surgeon came to my room to let them know surgery was done, everything was great, and I would be in recovery for about an hour or so. Dr. Perry also told them that she forgot to take a picture of my kidney. I had asked for one because I thought it would be cool to see what it looked like. She contacted Todd's surgeon in MN and he said he would get a picture for me. 

I remember waking up in recovery. I remember knowing where I was, but not really sure what was going on. I was trying so hard to keep my eyes open to see what was going on, but it was impossible. The first thing I did was put my hand on my neck to see if I had an IV there. The night before, my anesthesiologist told me that sometimes they need to put the IV in the neck, and he wanted to warn me so I didn't freak out if I woke up with one. Thank God I didn't have one! People kept coming up to me, asking what my pain level was on a scale of 1-10, and I think I kept saying 10. I also remember that as I first woke up, whoever was behind the curtain beside me was freaking out after he woke up and was trying to rip out his IV and all the things attached to him. All of his machines were beeping, and people kept rushing over to him to calm him down. I don't know if I was imagining this, or if it was real, but I remember hearing someone talking to the guy and I think he said his name was Jerry and he was there to do an ECG. I don't think I mentioned this before, but Jerry is the guy who did my ECG during my pre-op appointments the day before surgery, and he was very good looking! When I heard him behind the curtain helping the other patient, I was trying to think of something I could do to get him to come over and see me, haha! But then, I think I passed out. I'm not really sure if it was him or not, and thinking back now, I don't really think it was because it doesn't make sense for them to do that during recovery, but maybe they do. Maybe I had one too while I was asleep. I guess I'll never know for sure!

I don't really know for sure how long I was in recovery, but I think it was longer than expected. I remember having a really hard time waking up. I don't remember leaving the recovery area or riding in the elevator or however I went to go back to my room. I do remember that as they were wheeling me through the doorway to my room, I felt like I was about to burst into tears, but I don't think I did. I want to say it was around 11am or so when I got back to my room. Those next few hours are pretty foggy. I think I would pretty much wake up, push my pain pump to give myself morphine (which I could do every 8 minutes, and it was wonderful!) and fall asleep again. I vaguely remember people coming into my room and talking to me. My friend's daughter works at Mayo and I remember waking up and her being there to tell me her mom had been asking about me, but I don't remember what I said to her. I had this little breathing thing that I had to take 10 deep breaths into every hour to measure my lung capacity and make sure I wasn't getting any fluid in my lungs. The worst part about doing that was that my mouth & lips were so dry from having the tube down my throat during surgery. I was so thirsty, but was only allowed to have ice chips at that point. At one point, my parents had just left my room to go get food or something. My ice chips had melted enough that I had a cup of water. I was so thirsty, so I drank it. Shortly after, I started heaving like I was about to get sick. I think I freaked my little sister out because I was making noises but couldn't really talk. She asked if I was ok and I motioned to her that I was going to get sick. She didn't know what to do, so I pressed my call button to get a nurse. She came over the intercom and asked what I needed, but I could barely talk and she couldn't hear me. I tried again and said as loud as I could that I was about to get sick. Someone came in with a bag right at the point where I couldn't hold it in anymore. Talk about a painful experience! It's bad enough to get sick, but imagine doing it right after you had your abdomen cut open! I guess that's why they only let you have ice chips! 

By late afternoon, I was starting to feel more alert, and I wasn't pushing my pain pump as often as I was before. Right around dinner time, they had me get out of the bed and sit up in a chair. That wasn't too bad. I also had these pads wrapped around my legs that constantly massaged my calves to help prevent blood clots in my legs. And how could I forget to mention the catheter?! Before surgery, that was probably the one thing that scared me the most. I don't know why I was so worried about it, but it turned out to be not bad at all. It was a weird feeling though. I would get the urge to pee, but then the feeling would just go away. I was kind of worried because I hadn't peed at all. I remember saying something to my mom about it, about having the urge to go but then it was gone and that it probably wasn't good that I haven't peed. She told me I had been peeing all day. I said no I haven't, I haven't actually gone. Then I discovered the bag beside my bed, filled with pee. I thought that you still had to actually "go" and it would just go through the tube. I didn't realize the tube just takes it out for you, and you don't have to do anything! I wish I could have one of those all the time! :) The only time it bothered me was when I would have to stand up. It wasn't painful, it just put pressure on the bladder, which felt weird. 

After I was sitting up in the chair, I was allowed to order dinner. I ordered a smoothie and banana pudding. My friends Anissa & Courtney stopped by to visit. While they were there, my nurse had me walk a lap around the hall way. I had a big walker to hold onto for support. About 30 seconds after leaving the room, I got sick again. Apparently the few sips of smoothie that I had didn't agree with me. After that, I never got sick again.

 

While Anissa & Courtney were visiting, guess who else showed up? My nurse from the night before, Ken, with lumpia! I guess he was serious when he told me he was going to bring some for me. He came in on his night off, just to bring me lumpia. Unfortunately, I had no appetite at that point, but my family enjoyed them, and I had some once I was home from the hospital. They were pretty good! My friends Caroline & another Courtney also came to visit that night. I was feeling much better as the night went on. 

My mom was keeping tabs all day on Todd & Jennifer in MN. Jennifer's surgery went well. I got a text from her sister around 4:30pm that day, saying Jen was doing great and that my kidney had just landed in Rochester. She sent another text around 7:30pm to let me know Todd's surgery was a success, and his new kidney was already making pee! His surgery went a lot faster than what the surgeon expected. I was so thankful to hear that!

Thursday, March 26th:

It was definitely an early morning! The nurse came in before 6am to make me get out of bed to weigh me. Seriously? I feel like that did not need to be done that early in the morning. I also had blood drawn shortly after, and a shot of heparin in my belly, to help prevent blood clots. I also had antibiotics & an anti inflammatory and another type of pain killer given to me through IV.

I also heard from Todd bright & early that morning! 

I was so happy to hear he was doing so well. We talked on the phone for a few minutes shortly after. My family came back later that morning, and the day was filled with a lot of sitting around, walking the hallways, and napping. They removed my pain pump & my catheter that morning as well. My appetite was back, so I had a cheeseburger for lunch and pizza for dinner! I was really looking forward to the food there, because their cafe food is so good, but the hospital food is definitely not the same. Honestly, it was pretty gross. I don't remember if it was this day or the day before, but I started to feel a couple twinges of pain in my left shoulder. I assumed these were the dreaded gas pains that I had heard so much about. When they do laparoscopic surgery, they fill your abdomen with gas, and a lot of it is usually trapped in your body after they close you up. For some reason, as the gas is trying to escape, it tends to settle in the shoulder area, causing a lot of pain. Most people say the gas pain is the worst part about donating. I was very fortunate, because those couple of twinges were the only gas pains I had. They switched me over to Percocet for the pain. I had one pill around 10:30am, and another at 6:30pm, and after that I never had to take another one.

I almost forgot to mention...on Thursday, I got to meet Jessica. Jessica lives in WI and we connected on Facebook because we happened to have the same coordinator at Mayo. We also have the same frustrations with her, haha! Jessica was donating a kidney to her cousin, who lives here in Jacksonville. Her surgery was two days after mine.

Friday, March 27th:

Another early morning, with the same routine. Wake up to be weighed, have blood drawn, get shots, etc. I think I got my IV out sometime that morning. I was scheduled to be discharged that morning, but there was confusion between the nurses as to whether or not I had to have a bowel movement before I could go home. I was peeing & passing gas, but no bowel movement. Eventually, they gave me the all clear to go home, since I was passing gas. :) 

I got home around noon and pretty much slept the rest of the afternoon. 

My mom & sister left to go back home on  the 28th, and my dad stayed until April 3rd. It was a pretty boring week! Lots if sitting around, watching movies, and running a few errands here and there. One week after surgery, I had my first big outing. My dad & I went to zoo. We were there for a few hours, and I only needed to stop and take a break once. I had a couple of visitors at home, got a delicious Edible Arrangement, and I recieved dozens of cards. My dad had given my address out to people at church back home, so I was getting cards from all sorts of people, most of them I didn't know. My mom put together a huge "basket of sunshine" and brought it to the hospital. It was full of just about anything yellow she could find! 

All the cards and gifts were great, but I received a few things that were very, very special. My sister sent me a necklace that she had made for me with 3 different charms. She included a note telling me what each charm meant. The "sisters" charm for me to know she's always with me, the angel wing charm to have a guardian angel watching over me, and the white charm for my pure and giving heart. My sister and I have not had the greatest relationship throughout our lifetime, so for her to give me such a thoughtful gift really meant a lot.

Imagine my surprise when I recieved a little blue box from Tiffany's in the mail! Todd and his wife sent me a beautiful bean necklace that looks like a kidney. I absolutely love it, it's perfect! 

The necklace was more than enough, but a couple days later Todd sent me another gift. He sent me a trinket box with an engraving on the top. It's hard to tell from the picture, but it says "Kari, you are the reason the sky is blue..." I love how he incorporated the title of my blog. :) 

My recovery has been great! I went back to work on April 6th, just shy of two weeks post surgery. I had my two week follow up on April 8th. My GFR (basically my kidney function) was at 43%. It was about 90% before surgery, and 39% the day I was discharged. My creatinine (something that measures kidney function) was at 1.4. Normal range is 0.8 to 1.1, so I'm doing pretty well. At this point, my incisions have healed pretty well. I had a piece of the internal stitches poking out last week, but it's since dissolved and fallen off. Below are some pictures. 

This was taken 3 days after surgery. The 2 smaller incisions on the right side are from the laparoscopic tools, and the big one below my belly button is where the surgeon inserted her hand to assist with the surgery & remove my kidney. The small bruises on the left side of the picture are from where I had the shots in my belly. 

The next picture was taken 10 days after surgery.

The next picture was 17 days after surgery.

And this last picture was taken on my one month kidneyversary!

Overall, I'm feeling great! I never had to fill my perscription for pain killers and never had any gas pain. I would have some occasional discomfort, but nothing that Tylenol couldn't handle. It was uncomfortable to sleep for a while, because I'm a side sleeper, but after a couple weeks I was able to sleep comfortably on both sides. My energy level has been pretty good. The first week back at work was a little rough. I would be completely exhausted by lunch time, but it's gotten better and better each day. I'm definitely not as worn out as I thought I'd be. I still can't lift anything over 10lbs for a couple more weeks. I'm able to take a bath, go swimming, etc now that I've reached the 4 week mark, but I haven't done so yet. I still have a little bit of pain when I cough, sneeze or laugh, but it's not that bad anymore. My biggest problem has been forcing myself to rest and not over do it. I have felt so great that it's hard to remember I just had surgery, and I tend to try and do too much. I have to remind myself that I'm still healing.

Todd & Jennifer are doing great. They had to stay in MN after the surgery, but they were cleared to go back home to IL a little over a week ago. There was a little bit of a scare a couple weeks after surgery. Some of Todd's labs weren't very great, and they were worried he was having a rejection episode. Transplant recipients are put on a lot of medications after surgery, and if the levels aren't just right, they can be toxic to the kidney. Eventually, things balanced out and he was cleared to go home. As of this past week, his creatinine is down to 1.86! That's a big improvement! I'm praying a things continue to do well and improve. Todd & Jennifer got to meet some other members of our chain, and it sounds like everyone is doing well. I don't know much about them, and I'm still waiting to hear back from my coordinator (imagine that) to find out how everything went and to see if they were able to build on to the chain. Hopefully I'll get an update soon!

I have to say that the nurses and staff at the Mayo Clinic were phenomenal! I can not say enough great things about them. They all knew why I was there, obviously, but none of them knew I was donating to a stranger. I was honestly shocked by their reactions. Two of my nurses said in the entire time they've worked at Mayo (5 yrs & 15yrs) I was the first person they knew of to donate to a complete stranger. My parents said they talked to another nurse who had been there 16yrs, and she said I was only the second non-directed donor she had ever seen. Wow! I knew that non-directed donors were rare, but only 2 in the last 16 years?? That blew me away. That statistic needs to change. I'm currently exploring different ways that I can be a living donor advocate. I think there could be so many more living donors if there was more education, and I'm hoping to help change that. 

I also want to give a huge shout out to my parents. I would not have had such an easy recovery if it weren't for their help. They cleaned, washed my windows, went shopping, did yard work and probably a million other little things. Thanks mom & dad! I love you!

And thank you to everyone for your thoughts, prayers, messages and support. I recieved so many messages and texts, some from people I haven't seen or talked to in over 15 years. It all meant so much to me.

This won't be my last post. :) I'll update everyone on my progress periodically, and I'll definitely share my kidney picture, if I ever get it!

This is it!

On July 18th, I sent an email to a complete stranger.

"Hi! I live in Jacksonville, FL and I heard about your story on Facebook. I am absolutely interested in getting tested to see if I could be a match for Raleigh. Could you please send me some information on how I can do that? Thank you so much!" 

246 days later, I'm resting comfortably in my room at the Mayo Clinic. In about 10 hours, I'll be undergoing surgery to donate my left kidney and kick off a donor chain that will save 5 lives. Talk about a crazy feeling!

I haven't felt nervous all day, but the change in my blood pressure from this morning to when I checked into my room would tell you differently! My room is seriously almost as big as my entire house! I politely sent my family back to my house a couple of hours ago (sorry mom & dad!) so that I could have some alone time to rest & relax. I'm now realizing that's not going to happen, lol! People are going to be in and out of here all night. I've met with my anesthesiologist a little bit ago, and my nurse just brought me my "sparkling laxative." It tastes like heavy, sweet lemon syrup. Can't wait to get that show on the road...

I'll be getting my IV started around 9pm. Around 3:30am, they'll bring me down to the OR to get ready, and my surgery will start around 5am. I should hopefully be done and closed up by the time most of you are arriving at work!! 

I have so many things I want to say, and so many people I want to thank, but right now I'm having trouble finding the words. This whole journey has been absolutely amazing, and I'm so excited for Todd to get his new kidney tomorrow! 

This is officially my last post as an owner of two kidneys! Please, please send all your positive thoughts and prayers to all of us involved in the chain tomorrow, as well as our family, doctors, nurses, etc. 

Let's do this!!

63 hours

In about 63 hours, my surgery will be starting. There have been many times throughout this journey when I have felt things were taking so long and that this moment would never come. Now that it's here, it feels like it happened so fast and I find myself wishing I had just a couple more days to prepare. My parents and sister made it safely to FL, I've got some meals prepped, my house is mostly clean, my advanced directives are done and I'm doing last minute laundry as I'm typing this. I guess everything important is taken care of! Tomorrow will be spent finishing up a few hours at work, then stuffing my face before I have to start fasting at 6pm for bloodwork on Tuesday morning. :) 

I found out earlier this week that all of the final crossmatch testing came back negative, so we are all good to go as long as no one gets sick between now and Wednesday. I also went in this week for some final HIV & hepatitis testing, and everything came back negative. It should be noted that I did not find any of this out from my coordinator, because she decided to leave me hanging and take the week before my surgery off, without telling me. I literally had to call the MN hospital to get an answer. I think Mayo will be getting a nice long letter from me after this is all over. I can't help but wonder how many more living donors there would be if this process was better.

I've keep in touch regularly with my recipient, Todd, and we've been getting to know each other. From what he tells me, he and I are very much alike. Just more proof that this all happened the way it was meant to! I can't imagine what he is feeling right now. Not only is he undergoing surgery, but his wife is also. She is continuing our chain by donating to a stranger. She'll be having her surgery about the same time as mine, and then Todd's will be later that evening. I'm so excited for Todd to get his new kidney and to start having all good days!

Over the last couple of weeks, I've finally started to feel nervous. I'm not really nervous about the actual surgery, but more for the recovery. I like to know exactly what's going on, and what's going to happen so that I can be prepared. When I start to wonder how I'm going to feel when I wake up and am missing one of my organs, I have no idea what that's going to feel like and that makes me nervous. I know there is no way to prepare for that. I will say though that my nerves have calmed down a lot over the last few days. I think I've been so preoccupied with people visiting that I haven't had much time to sit and dwell on it too much. That's a good thing! 

I've got a morning full of appointments on Tuesday, a couple hour break for lunch, and then back to check in at the hospital. I'm sure I'll have lots of downtime that night, so I'll post another update then...and that will probably be my last post while I still have 2 kidneys!! :)

Grab a tissue, and a sweater

I'm going to warn you. Before reading this, you'll want to grab a tissue and maybe a sweater too. A tissue because you're probably going to shed some tears, and a sweater to warm you up after you get goosebumps! 

As you all know, I chose to be a non-directed donor, which means I'm donating my kidney to a complete stranger. Going into this, I completely understood and accepted the fact that I wouldn't know anything about the person receiving my kidney. I also knew there was a possibility I would never, ever know anything about them unless we both decided we wanted to exchange information in the future. If that were to happen, the soonest it would happen would be several months after the surgery. Honestly, I was dying to find out who I was donating to, but I was also ok with not knowing. I told myself that maybe it was better to not know. Anything could happen, and if something were to happen and I could no longer donate, or if anything happened during or after the surgery, it might be best for me to not know who the person was. I think because I didn't know who they were, I was not quite as emotionally attached to this situation as I thought I would be. Don't get me wrong, my heart was still telling me to do this. I just felt a little less emotional about it. 

I've mentioned before that I joined a group on Facebook for kidney donors and recipients. Maybe a month or so ago, the thought crossed my mind that maybe my recipient or other members of the donor chain I'm starting could be in this same group. There are around 11,000 members in the group, so of course I figured the chances of finding them in the group were pretty slim. Plus, there are so many posts from this group each day that it's hard to keep up with every single one to even try to keep an eye out for any clues that someone could be part of my chain. I rarely go to the page to see all the posts. I usually only see the random ones that show up as I'm scrolling through my newsfeed. Needless to say, I never really thought much about it again. 

On the day I found out a definite date for my surgery, I posted to the Facebook group, but gave very little details other than the date and a link to my blog. That night, I was talking on the phone with my dad and he asked me if I knew the name of the person I was donating to because he wanted to put their name on the prayer list at church. I had to remind him that I don't know their name, and probably never will, so he said he would just put "end recipient" instead. This caused me to think about whether or not they were in the Facebook group, but I hadn't noticed any comments on my post from anyone who might be having surgery that same day. 

The next day, I had just gotten back to my desk at work after lunch, and I got a text message from Kristi. If you don't remember, Kristi is the wife of Raleigh Callaway, the man in GA who I had originally been interested in donating to. Kristi and I have become friends and have stayed in touch since then, and she also happens to be a member of the kidney donors and recipients Facebook group. She sent me a screenshot of a post to the group and asked if this could be my chain.

In case you can't read what it says, its a post from a woman saying that her and her husband are part of a kidney chain at Mayo Clinic on March 25th, and that there are 4 pairs involved! I read through the comments, and saw that it going to be at the Mayo Clinic in Rochester, MN. I think my heart stopped when I looked at that picture. I immediately jumped out of my chair and ran over to a coworkers desk and showed her the text. All I kept saying was "This is my chain, it has to be!!" I couldn't believe it! I must have had a look of pure shock on my face, because my coworker made a comment that she could tell how much I was freaking out just by looking at me. I kept rereading the post, over and over again, and all of a sudden it dawned on me that this woman's husband could be my recipient! I was in complete shock. I got on Facebook, found the post, and sent a message to the lady. I think I said something like, "This is going to sound crazy, but I think I might be the donor who is kicking off the chain you're in, and actually I think I might be your husband's donor!" She wrote back right away, and we shared some information back and forth, and she said all they knew about her husband's donor was that it was someone in FL! As far as I know, I'm the only person in the chain that is from FL, so we are pretty sure I'm his donor. What are the odds of this happening? Shortly after, I connected with the woman and her husband on Facebook, and I'm sure we've all been stalking each other there ever since! :) Do you guys have goosebumps yet?

I am so happy to say that I'm donating my kidney to a man named Todd. Unfortunately, Todd is already married so my dreams of donating my kidney and falling in love and getting married to the guy have been ruined. By the way, I'm totally kidding, that wasn't my dream. I'm sure everyone has seen the article that recently was going around where that actually happened. I must have had at least 10 people send it to me, haha! Todd and Jennifer got married last summer, and between the two of them, they have 5 children. They live in IL, and he is 47. Todd started having issues in his 30s, but doctors couldn't determine anything was definitely wrong. 10 years later, he ended up in the hospital, and his kidneys were only functioning at 24%. Currently, his kidney function is at 17%, and he has been diagnosed with Alports syndrome. Luckily, he has not had to go on dialysis yet, and hopefully he will not have to before his transplant. He was put on the Mayo's transplant list last September, which is the same month I started my testing. We have been messaging back and forth quite a bit, and we did a Skype call a few days ago so that we could officially "meet" face to face. I think we were both a bit nervous in the beginning, but that went away quickly, at least for me. It was also pretty emotional. What do you say to someone who is thanking you for giving them this amazing gift? I know it's hard for him to even try to put that into words. Todd, if you're reading this, all I can say is that I'm so grateful that I can do this for you and your family. 

Todd and his wife seem like really great people, and it sounds like we have gone through a lot of similar experiences with our families. Jennifer will be donating to a stranger (which is amazing!) who will be having their surgery at the Mayo in Rochester on that same day, so we are hoping to find out more information about them and hopefully others in our chain. The more we talk, I have a feeling that she might be donating to the person I was not a match for a few weeks ago. 

This whole thing has been so surreal, I still have a hard time believing how it all happened. There are so many little things that have happened that make me truly believe this was meant to be. It's also makes me realize how small the world can really be. Kristi posted some information to the Facebook group a few days after Todd & I connected, and she included a little bit of my story. Todd happened to see it, and he sent me a message asking if I saw the article posted about me from the "Callaway's Angels lady." I explained how I knew Kristi, and that she was the one who saw his wife's post and shared it with me, and that's how he and I connected. Then he told me that they had been following the Callaway's page and were going to reach out to them for help with finding a living donor, but then things worked out with the paired exchange program so they went that route instead. How cool that we were all sort of connected through the Callaway family. Also, if Kristi wouldn't have seen Jennifer's post that day, Todd and I may have never connected. I was talking with Kristi about this, and she said that like me, she hardly ever goes to the kidney donor & recipient page, but just sees what's in her newsfeed. That day, in that moment (which happened to be only 10 minutes after Jennifer posted) she said something told her to go to the actual page, and that's when she saw the post and sent me the text. How crazy, and proof that this was all meant to be. Do you have goosebumps now? :)

This last week and a half has been so overwhelming, but I must admit that whenever I stop and think about it (which is almost all of the time) I get a huge smile on my face! Knowing who I am donating to, and having them be willing to have a relationship is so amazing. It has definitely changed my feelings and emotions, but in a good way! I can't wait to continue to get to know Todd and his family, and I'm looking forward to having them be a part of my family.

One last weird thing that happened. I have recently discovered Podcasts, which are awesome and I can't believe it took me so long to discover them, and I've been listening to one called Strangers. Each episode is a different story, and the show focuses on human interaction, and how strangers become "strangers no more." I have been thinking for the last few weeks that I should contact the show and share my story, because it fits perfectly with the focus of the show. I mentioned this to Todd and Jennifer on our Skype call the other night, because we had been joking that we're going to quit our jobs and travel around to be on every single talk or news show to share our story and promote awareness. It just so happened that the very next morning, I was listening to an episode of Strangers that had originally aired almost a year ago, and guess what the topic was? Kidney donation! Specifically, donating to a stranger! The host said that she had always thought the idea of donating an organ to a stranger was absolutely crazy, but she was starting to think it wasn't. She had posted a question to their Facebook page asking if anyone had donated to a stranger or thought about it, and she said she had recieved zero comments. Now, this was almost a year ago, so maybe she did get some feedback eventually, but if that's not a sign that I should reach out to the show and share my story, I don't know what is!

Moving Day

It's official! Surgery (or my kidney's moving day as I like to call it) is scheduled for March 25th!! Yay!!!! I can finally plan!

I'm sure these next 5 weeks are going to be crazy, but I'm ready! I've got meals in the freezer, my time off of work is approved, and I probably still have a million things to do...like renew my real estate license, do my taxes, finish up my advanced directives, ugh. But I'm ready! Everyone keeps asking me if I'm nervous yet, and honestly I'm not. I think I'm more anxious and stressed about preparing for my family to come and stay with me.

I have a couple of things to get through before surgery day. Mayo is mailing me another blood kit (oh how I love those) which I need to have done on March 9th. Hopefully that same day, I'll also have some additional blood tests to make sure I haven't contracted anything since my last tests in September, such as HIV, hepatitis, etc. If they can't be do e this day, I'll have to go in a week before my surgery to have them done. 

On the 24th, I have to show up bright and early for a fasting blood test at 6am (we also know how much I love those) and then a whole list of other appointments. Urine collection, ECG, chest x-ray, and then meetings with my coordinator and surgeon. Speaking of my coordinator, last week I got so frustrated with her that I finally emailed a donor advocate at Mayo and expressed my disappointment and frustration with her. Not even give minutes after I sent the email I got a call from the advocate. Apparently this was not the first time she has heard these complaints. She did explain some things that have been going on at Mayo and the transplant process in general, which explains why some things have happened the way they did, but also said she would forward my email to my coordinator's supervisor so that the customer service issues could be addressed. I don't know if they were already addressed with her, or if it's just a coincidence, but she has been sweet as pie to me for the last week, and I haven't had any issues with her! Thank goodness!

After I'm all done with my pre-op appointments on the 24th, I'll have a couple of hours and then I'll have to report back to Mayo at 3pm to be admitted for the night. Because my surgery is going to be so early in the morning, they will have me stay the night before. On surgery day, they'll take me down to get prepped for surgery around 3:30am, and surgery will start around 4:30 to 5am. At 9am, the courier is scheduled to pick up my kidney from the OR desk, and from there he'll head to the airport. It's not a direct flight to Rochester, so the courier will be traveling along with my kidney on the plane. The layover will be in Atlanta, which I think is pretty cool because that's sort of where this whole journey started for me. If for some reason they aren't able to make that first flight, they have 2-3 back up flight options.

Since I'm kicking off a chain, there will be multiple surgeries going on the same day or within days of each other. As of right now, I don't know anything about the other donors and recipients in the chain or where they are located, but I'm hoping to get a least a little bit of info so I can share it with everyone. With my donation, there are four recipients lined up and ready to go. At the end of the chain, there will be a leftover donor. I was told that their kidney will most likely be sent to Mayo here in Jax the week after my surgery, and from there they are hoping to match a few more people and add on to the chain. At a minimum, there will be five recipients in my chain, but hopefully that number will grow! Some people have a hard time understanding how the chain works, so I drew a little chart to show how mine is going to happen. Hopefully this helps! 

I think that covers just about everything! Oh, I almost forgot! I "met" a girl named Jessica through Facebook. We both belong to a kidney donors and recipients group, and we connected because we both have the same coordinator (and unfortunately issues) at Mayo. She lives in WI and she's coming down to Jax to donate to her cousin. Her surgery was scheduled for a couple weeks ago, but unfortunately had to be rescheduled the day of. I still can't imagine! How heartbreaking. Anyways, the change in date must have been a blessing in disguise, and our paths were meant to cross, because now we are having surgery just 2 days apart! I'm looking forward to meeting her! 

I also wanted to thank everyone for their generosity and for sharing my Go Fund Me page. I've raised almost $700, which definitely surpasses my original goal! Thank you, thank you, thank you! If you haven't had a chance to check it out yet, you can see it here. http://www.gofundme.com/jwrz4w

I can't believe the day is almost here! 35 days!!

Four little words

Over the last few weeks, I think I've experienced just about every emotion possible. Excited, anxious, nervous, angry, frustrated, annoyed, heartbroken, sad, overwhelmed, exhausted and everything in between. I've been sitting here staring at the screen for the last fifteen minutes, trying to figure out how to put into words how I'm feeling at this very minute. It's impossible. At 2:45pm today, I finally heard the four words I've been waiting to hear for what seems like forever.

You are a match!

I'm so happy to announce that my left kidney will be traveling (on a jet plane) to MN to be placed inside it's new home!

So much has happened over the last few weeks. It took forever to get my blood kits, my appointment at Mayo was mid scheduled and I fainted during my blood draw. Yep, out cold. After all of that, I recieved the sad news that I was not a match for my recipient. They had a reaction to my blood. Fortunately, they had another potential recipient lined up, so I did another blood draw and this time I didn't pass out. :) After a week and a half of waiting, I finally got the good news today! 

I don't know anything about my recipient, other than it's a male and he's at the Mayo Clinic in Rochester, MN. That could be all I'm ever going to know about him. I'm definitely open to the possibility of meeting someday, but he would have to want that as well. It is kind of weird to think about someone walking around with a piece of you inside them, and not knowing who they are. Not only am I saving this man's life, but four others are getting new kidneys all because of my donation. I am the start of a ten person chain, so a total of five people will be getting a new lease on life. That's incredible! 

As of now, I don't have a surgery date scheduled, but it will most likely be March 23rd or 30th. They try to schedule all of the surgeries in the chain together, and the caregiver for one of the recipients is out of the country so they need to find out when they will be back before we can finalize a date. I'll have my pre-op procedures done the Friday before my surgery, and then I'll be admitted to the hospital on Sunday evening because my surgery will be bright and early Monday morning, probably around 3:30am! It's done so early because my kidney will have a flight to catch to MN. There is a courier service who will look at flights once the date is set, and find the earliest flight from Jacksonville to Rochestor, and then they back schedule everything based on the time of the flight. The courier will pick up my packaged kidney from the OR desk and take it to the airport. They put it directly on the plane. If it's a direct flight, my kidney will ride in the cockpit with the pilot. I wonder if I can somehow get a photo of that? That's pretty cool! Once the plane arrives in MN, a courier there will come on the plane as soon as it lands and take the kidney to my waiting recipient at the hospital. If it's a non direct flight, the courier will travel with my kidney to make sure it doesn't get lost while switching planes. Now that would be an awesome job to have!

Now as soon as I have a date, I can start planning a kidney going away party! Don't laugh, I'm serious. :)

OMG, am I really doing this?!?

Please excuse my language, but $h!t just got real!!

Today was conference call day at Mayo Clinic, and I tried as hard as I could to not call them and give them a chance to call me, but I just couldn't do it! Of course I got my coordinator's voicemail when I called, but this time she actually called me back about 30 minutes later. When she called, she had just finished with their conference call, and she had some very exciting news for me. 

I HAVE A RECIPIENT!!! AND I'M KICKING OFF AN 8 PERSON DONOR CHAIN!!! AAAAAHHHHH!!!

Words can not describe how excited I am right now!! 

So here's what I know so far. I have one last blood test to do to make sure everything is 100% good between me and the recipient, but it's all looking great. All I know about them is that it's a younger male, and he's in the MN area. I'll be getting a blood test kit in the mail, which I will take to the Mayo Clinic here in Jacksonville to be completed and then they'll mail it to the Mayo Clinic in Rochester, MN. After they receive it, it should take about a week before they get all the results back and can confirm 100% that we are a match. Then we'll schedule a surgery date. She asked me if 10 days notice is enough time for me. Um, 10 days?!? This is why I say $h!t just got real! I need enough time for my family to make travel plans, and to get things squared away at work, so 10 days might be pushing it, but we'll see how it all plays out once I get the green light that everything is good to go.

As if that wasn't great enough news, I'm also kicking off an 8 person chain! As of right now they have 4 recipients (including mine) lined up and ready to go, so my donation will be kicking things off and making this all possible. They are hoping to be able to add more to it, but I would say 8 people is a pretty solid start! Wow, just wow! I can't even explain what I'm feeling right now. It's an incredible feeling to know that I'm going to be a part of this life changing event for so many people and their families. Wow! 

I'm sure the next couple of weeks are going to be a whirlwind, but I'll be sure to keep everyone updated, so keep an eye out! 

I also wanted to briefly mention a Go Fund Me campaign I started. After much thought, I decided it was worth a try. The purpose is to hopefully raise some money to help out my parents with their travel expenses, especially considering their plans are probably going to need to be made without much notice. If you'd like more information or would like to donate, please click here.

Thank you all for all the support you've shown me over the last several months, and for taking the time to follow my journey. This whole experience has been amazing, and it's so exciting to have everything finally coming together!

Somebody to love

Are you familiar with the Queen song, Somebody to Love? Lately, I feel like my kidney has been singing that song a lot. "Can anybody...find me...somebody to love..." It's been 70 days since I was approved as a donor. 70 days of waiting as patiently as I can. 70 days of not finding a recipient for my kidney to love. My donor coordinator told me that if I'm not matched with someone in the Mayo 3 Site Paired Exchange Program within 90 days, I would be moving to a national paired exchange list. That 90 day mark is coming soon, and I'm getting a little anxious. What happened to being matched with someone really quickly, like she originally told me? The last few weeks, I've been trying to get a hold of my coordinator, to touch base and see what happens if I get moved to another list. Even if she didn't have much of an update for me, I still wanted to talk with her. It's been almost 2 months since we last spoke. I had left her several messages, and never recieved a return call. To be honest, I was really getting pissed off. In my opinion, she should be reaching out to me on a regular basis to make sure everything is ok, that I still want to donate, etc. I understand I'm not her only patient, and it's holiday season and people are busy, but to not return any of my calls is absolutely ridiculous. I left her another message earlier today, and then spent the rest of that day sitting at work, fuming, coming up with this rant I was going post about how horrible Mayo's communication is and how I was going to call first thing Monday and ask to speak to someone else who could help me because my coordinator obviously didn't care about me, blah, blah, blah. Then, a miracle happened. At first, I thought I might be hallucinating when I saw her number on my screen, but she was actually calling me!! It took me a second to realize what was happening and actually answer my phone, but I'm so glad I did, and you're about to find out why.

Drumroll please...

I have a potential recipient!! I HAVE A POTENTIAL RECIPIENT!!! Now, I hope I'm not jinxing myself by even mentioning this, because I really don't have much information yet, but I'm too excited to not share! She said nothing is confirmed yet, but they have been "playing around" with chain possibilities, and there is a potential match for me. The Mayo Clinics all have a weekly call on Thursdays, but because Christmas and New Years Day fall on Thursday, their next one won't be until the week after New Years. By that time, she said they should know if they are going to move forward with the additional testing for this recipient, which would start with the Mayo Clinic in Rochester, MN sending me a blood test kit to have completed and sent back to them to test against the recipient. I'm assuming this means the potential recipient is on the list through the MN clinic. I've gotten lots of questions from family and friends as to who this person is, what's their story, etc. At this point, I don't know anything. I would guess that if we move forward with testing and we are a match, I'll find out a few things, but probably not a lot because medical information is pretty confidential and regulated. I guess I'll find out how that all works as we go along. In the mean time, I'm excited, anxious, curious...a whole bunch of emotions! Mostly relieved that there is someone out there who is a potential match. I've been asked if I'm nervous, and honestly I'm not. I think everyone else is more nervous than I'll ever be. A friend of mine has openly told me thinks it's great what I'm doing, but he wishes something would change my mind because he's nervous about something happening to me. When I shared the news with him today, the look on his face and hearing him say how nervous he is made my stomach tie up in knots a little bit. That's probably as close to nervous as I've gotten. I'm just excited that there is progress!

I promise that I will keep everyone updated as I find out more information. I have a few updates I'd like to share on some other people I've been following, but it's going to have to wait. It's been a long day, and I'm exhausted!!

Until next time, I hope everyone has a very Merry Christmas (or whatever you celebrate) and a Happy New Year. 2014 has brought so many blessings to my life as well as to others, and I know 2015 is going to be just as great! 

Waiting for my match

I can't believe that it's been 4 weeks since I found out I was approved to be a living kidney donor! It honestly seems like it was just last week. Unfortunately, nothing has really happened with me in the last 4 weeks. I called my donor coordinator last week. I wanted to check in, but more importantly I wanted to inquire about the bill I received from the Mayo Clinic saying I owed them over $16,000!!! Don't worry, I don't really owe them anything. It was a billing mistake. I'm sure you can imagine the mini heart attack I had when I opened that envelope. When I spoke to Lisa last week, she said she really didn't have any news for me yet. She originally told me that I would probably be matched pretty quickly, but it sounds like they are having issues finding matches for other people in order to keep the chain going. She also mentioned that since we agreed I wouldn't be having surgery until after the first of the year, the "powers that be" might be delayed in matching me because I won't be ready for surgery for a couple of months. I'm not too worried about it. I have faith that everything will work out the way it should, when it should.

Nothing has happened with me in the last few weeks, but there has been lots of exciting things going on with some of the families I have been following. I mentioned in a previous post that Raleigh Callaway had his transplant back on September 25th. In case you forgot, he is the person I heard about back in July who inspired me to become a donor. From everything I've seen and heard from his wife Kristi, Raleigh and his donor Chris are both doing great! Kristi and her friend Brandy have both been very hard at work with Callaways Angels, bringing about awareness about kidney disease and donation. If you haven't checked out their page on facebook, check out Our Daddy Needs a Kidney-Team Callaway. Each week or so they feature the story of a person looking for a donor. This is such a great thing they are doing, and I just know they are going to help so many people find their perfect match!

I have also previously mentioned LaDonna, who I met at the Mayo Clinic while I was doing my testing. She was there going through her own testing so that she could donate to her husband Luke. She had already found out she was a match, but was waiting to be approved by Mayo to be a living donor. She found out soon after I did that she was approved, and her and her husband had their surgery this past week, on November 7th. It sounds like everything was a success! I was hoping to go and visit her this past weekend, but I came down with a pretty bad cold and didn't want to risk spreading to her or her husband. I can't wait to pick her brain and hear specifics about her surgery, since I will be having mine done at the same place.

The last person I have been following is Geoffrey McIntyre. I came across their facebook page shortly before I started my testing at Mayo. He was on the transplant list at Mayo, as well as another transplant center in GA. They announced several weeks ago that they had a potential donor, but that person still had some testing to complete. It turns out they were a match, and they were approved by the transplant center in GA, so Geoffrey is scheduled to get a new kidney on December 12th...which just happens to be my birthday! Sounds like a great day to me. :)

I have also joined a group on facebook for kidney donors and transplant recipients. It has definitely been informative and helpful. When I first decided I wanted to donate, I knew nothing about kidney disease. Every day people are posting about their experiences and any questions they have, and there is never a shortage of answers or comments. I could literally spend all day looking through the page. It's really opened my eyes to what life is like for something who is waiting for a transplant. The group has also allowed me to connect with people around the country who are in the process of donating themselves. It's great to talk with someone who is going through the same thing you are.

I hope I have some exciting news of my own to share soon!

The moment we've all been waiting for

The Browns beat the Steelers. Could this week get any better? Yes, as a matter of fact, it certainly does! Today I got the call I've been waiting on for what seems like forever. As of 1:10pm, I am the newest, APPROVED living kidney donor at Mayo!!! Yes, that's right...I'm APPROVED!!! 

Oh, and they want one more blood test, haha! Apparently the last blood test I did was just to confirm my blood type, and not to enter me into the matching system as I was told. So, Thursday I go in to have that done so they can enter me into the system and find my perfect match! Today's news was so great that I'm not even upset about more blood work. 

Words can not describe how excited I am! I thought for sure I would cry like a baby when I got the call, but so far it's just been nonstop smiles. This next chapter in my life is beginning, and I can't wait to see where it leads!

The waiting game

I was hoping that by now I would have some exciting news to share with everyone, but I'm still waiting. I got a call last Tuesday from Rhonda, who has been filling in as the living donor coordinator. She called me that morning to tell me I was being presented to the transplant board that day, and that I should be getting a call no later than Wednesday with their decision. She also told me they needed me to have one more blood type test, just to confirm my blood type. They already did one, but I guess it's mandatory to do two and they had forgotten about the second one. She said it wouldn't affect getting approved. I went ahead and scheduled that for Friday. She also told me that Lisa (the actual living donor coordinator) was back in the office now, so I would be working with her and she would be the one to call me with the decision. Lisa has been out on medical leave throughout my entire process, so I had never met or talked with her. At this point, I'm 99.99999% sure I'm going to be approved considering all my test results came back excellent, but there is always that small chance I wouldn't be. I was really looking forward to getting the call so I would know for sure and be able to move on to the next step. 

So Wednesday came, and I sat at work all day anxiously waiting for the call from Mayo. By 3pm I had not heard from them, so I decided to call Lisa. She did not have the news I was hoping for that day. She said the meeting minutes from the transplant board had not yet been certified, so she couldn't share anything. She brought up having to get another blood typing test done, which I already knew about, but she also said I might have to do another 24 hour urine collection. Since she has been out on leave throughout my entire process, she has been going through all of my information to make sure everything has been completed, and she noticed that during my last collection, I had an elevated amount of protein in my urine. I was already aware of this, but I was told by the doctor that it wasn't anything to be concerned about it and that another collection wasn't necessary. Apparently not everyone agreed. I was not a happy camper when I heard this. In fact I was pretty ticked off. It was frustrating to me that this wasn't caught earlier. Lisa called me the next day and confirmed that I will need to do another 24 hr collection and I get it set up when I go in for my blood test. I don't know any woman who likes to pee in a cup, let alone do it for 24 hours! I really had to take a step back and remind myself that this is being done for my own well being. They have to do everything possible to make sure I'm healthy enough to donate. Annoying, yes, but in the grand scheme of things it's really not that big of a deal. 

Friday I went and had my blood test. I had the same guy who did it when I almost passed out, and of course he remembered me. Only 2 tubes this time, so I was good. And no fasting! I picked up my big red jug, and I was all set! Since I have never met Lisa, she asked me to stop by her office. We went over what my options are for donation, and I made a decision to start a donor chain in the paired exchange program. I thought long and hard about the decision, and decided that was what I wanted to do because it will help multiple people. They will first enter me in the Mayo 3 Site Paired Exchange Program. This program only includes pairs who are on the list at one of the three Mayo Clinics throughout the country. If they are unable to match me with anyone on that list within 90 days, they will move me to the national paired exchange list, which includes transplant centers other than just Mayo. Once I'm matched and our chain is built, they will coordinate all of the surgeries, flights for the kidneys, etc. Lisa said it could take anywhere from 6 weeks to 3 months to get all of that done. That means the earliest I could probably have my surgery would be beginning to mid December, depending on how fast I'm matched to build a chain. As of now, this is my plan, but I'm open to switching directions if another opportunity presents itself. I can't wait to see how it all unfolds!

The results of my 24 hour urine collection were posted Monday evening. My protein level went down. The first time it was 180 mg/24 hrs and this time it was 143. The little side note with it said desired levels are 27-93, so I was still worried mine would be an issue. I talked to Lisa yesterday, and she told me the generally look for it to be under 150, so I just made it! I'm not sure why my levels are higher than normal, but they don't believe it's related to my kidney function. There are all kinds of things than can cause elevated levels. Infections, stress, dehydration, medicines, exercise, etc. It's also a sign of potential kidney problems, so that's why they wanted me to do the collection again. Luckily everything seems to look good! 

Now that I have updated results, I will need to be presented to the transplant board again. My case is scheduled for next week, so unless anything else comes up (which I don't foresee happening) I should get my final answer by middle of next week!

One other exciting thing I want to mention is that Raleigh Callaway recieved his transplant on September 25th! Raleigh is the gentleman from GA who I originally reached out to be tested for. A man named Chris from TX heard about Raleigh, and felt compelled to be tested. He turned out to be a match! From what I have been told, both men are doing fabulous! How amazing that just 10 weeks after posting Raleigh's story online, he was able to find a donor and recurve his transplant, not to mention the thousands and thousands of people who have been touched and inspired by his story. I feel so blessed to be a part of it. :)

My testing is done!

It's hard to believe how fast these last three weeks have gone by! Wednesday was my final day of testing. I met with a transplant social worker, and had to bring along a caregiver. Since any family that will be here for the surgery lives out of state, my sweet friend Caroline came with me to the appointment. The meeting was to make sure I had a plan in place for after the surgery, because I'm going to need a lot of help. The meeting was pretty easy. I think Caroline only needed to be there for about 5 minutes, so I felt a little bad that she came all the way there for that, but I definitely appreciate it! I know for sure that my dad will be here for the surgery, but not sure yet about any other family. I don't expect him to stay the whole 2 weeks (or maybe more) that I'll be off work, so I'm glad Caroline is here to step in and help me out too. I can't think of a better care giver! I know she'll give me the 5 star treatment. :) The rest of the appointment was basically just talking with the social worker about me, my family and friends, my lifestyle, etc to see if there is anything that might be greatly impacted by the surgery. The social worker didn't have any concerns about anything. 

That was basically it as far as my appointments! As of Thursday, I still hadn't recieved the results of my biopsy, so I called Rhonda, the pre-transplant coordinator. She checked, and the results were in, so she was able to tell me everything came back negative, so I'm in the clear! Now I can breath a big sigh of relief! As far as next steps, she said they are waiting in a couple of the doctors to enter their notes from their meetings with me. As long as they get everything in, I'll be presented to the board next week, and I'll receive a phone call shortly after with the good news! At this point, I'm 99.999999% sure I will be approved, which is exciting!! At that point, I'll have to make my final decision as to whether I want to be part of a donor chain, or just be matched to an individual. She also mentioned they are currently working on a 15 person chain that they may be able to get me in on if I decide to go that route. I'm still trying to decide, and hoping for a sign, gut feeling, something to help steer me in the right direction.

I probably won't have much to update until I get the phone call, but I can't wait to share that news with everyone!!

Testing Day 5

I can't believe I'm almost finished with my donor evaluation! Within a couple of weeks I should know if I'm approved. Yesterday was my 5th day of testing. I only had 2 appointments, a psychiatric evaluation and a meeting with a living donor advocate.

I was a little anxious for the psychiatric evaluation, because I wasn't really sure what to expect. I had talked to my dad the night before, and he was telling me about a woman at his church who recieved a kidney transplant not too long ago. He was telling her about me, and that I was about to have the psych evaluation, and she told him to tell me to be prepared for the doctor to really grill me on why I wanted to do this. She was basing this on feedback she recieved from some of the people that were tested as donors for her. After hearing that, I was even more anxious! I know my heart is in the right place, but maybe they wouldn't think I had a good enough reason to want to do this. Most donors want to donate because they have a loved one who is going through or has gone through some sort of kidney disease. That's not the case with me. At almost every appointment, I've been asked who I'm donating to. When I tell them I'm an altruistic donor with no directed recipient, I've gotten the same reaction from every single one. Shock. Disbelief. Looking at me like I'm sort of crazy, haha! It's very obvious that they don't have non-directed donors very often. I was just hoping I would be able to show to the psychiatrist that this is something I really want to do. 

The appointment went nothing like I thought it would. First, I had to fill out a packet if paperwork. It was a lot of questions about my mental health history, family mental health history, my thoughts, etc. After that, I met with a nurse who went through the packet with me and asked the questions again. It was pretty simple since I answered no to pretty much every question. Afterwards she gave me what she called a neurological test. She would say certain words, and I would have to repeat them in the same order, remember them later and repeat them, repeat back numbers, phrases, etc. There were pictures for me to identify, shapes to draw, and I had to do some basic math. I got everything correct and scored the maximum score. She asked me to share the story of how I decided to become a donor, if I understood the risks involved, and if I've thought about what would happen if a donate a kidney and down the road I have a child or family member who needs one. My reply was that I am not guaranteed to be a match for them just because they are family, and I would hope that good karma would come my way because I had donated in the past. After she was done with her questions, she took me back to meet with Dr. Vasquez, the psychiatrist. I honestly don't think I was in her office more than 3 minutes. She introduced herself, told me it seems I don't have any past, present or family issues with mental health, asked if I had any questions, and that was that! Piece of cake. :)

Next was my appointment with a living donor advocate. Her job is to make sure my best interests are taken into consideration throughout all stages of this process. She was very helpful and was able to answer a lot of questions I had about how everything happens. We talked about the possibility of meeting my recipient and how that all works. Asucally, if we both agree to meet each other, it can be arranged, but not until long after the surgery. She said about 6 months after the surgery, the recipient is encouraged to send a thank you note or letter to the donor, if that's something they want to do. It's sent through UNOS (United Network for Organ Sharing) and they screen it to make sure it doesn't contain any personal information such as an address or phone number. If we would like to meet, UNOS will evaluate the situation and decide if it's ok. She said it's done this way for many reasons, all if which are to protect both the recipient and donor. She said many recipients go I to a state of depression after the surgery, especially if there are any complications. They might feel guilty for taking someone's organ. The same can happen for the donor. It's possible to feel depressed and "mourn" the loss of your kidney and you might have feelings of anger or resentment towards the recipient. She also said some people can be clingy and think they have found a new best friend and never leave you alone. These are all things I never would have thought of, but they make sense. I would hope I wouldn't have any of these feelings, but I guess you never know how you're going to feel until you are actually in the situation. 

The last thing I still had questions about were advanced directives. It's not something anyone wants to think about, but this is major surgery and I think it would be smart to have them in place. The living donor advocate also happens to counsel people on advanced directives, so she offered to extend her meeting with me to go over it. She was very, very helpful. I don't know about you, but I've never ever thought about what I would want to happen to me if I were on life support or in a situation where I was unable to make decisions on my own. She gave me the forms to fill out, and went through each section in detail. She gave me a lot of examples of situations that could happen. It's a lot to think about it when you're only 33, but I know it's something important to have.

I can't believe tomorrow is my last day of testing! It's only been about 2 months since I made the decision to become a living kidney donor, but it feels like it's been so much longer! I remember when I was told it would be 4 weeks before I could start my testing. Those 4 weeks felt like forever, but now that I'm almost finished it seems like it all happened so fast. I'm looking forward what tomorrow has in store!