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!