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!