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!

Testing Day 4

I had my 4th day of testing last week. It started out with another fasting blood test, so of course I was prepared to almost pass out again and feel crappy all day, but this one wasn't nearly as bad as the other other. There was only one tube to fill this time, instead of the 50 million they had to fill last time. This test was just to check my glucose. 

Next up was a surgical consult. I met with Dr. Taner, who is one of the surgeons. Either he or his partner will be performing my surgery. He explained to me how the surgery will be done. At Mayo, they do a sort of "hybrid" surgery called hand assisted laparoscopic surgery. There will be 2 small incisions on my side where the laparoscopic tools will go in, and then one larger incision either right above or right below my below button where the surgeon will insert his and to assist the tools during surgery, and then he will remove my kidney through this opening. He drew me a very "high tech" picture of the abdomen and where everything is located, and how the kidney is attached to everything. 

He explained the risks to me, which include bleeding, or accidently damaging another organ such as the spleen and having to remove it. If excessive bleeding occurs, there is a chance they will have to convert to open surgery, which is where they would open me all the way up, and the hospital stay and recovery time would be a lot longer. The Mayo Clinic has performed 300 surgeries on living kidney donors, and of those 300 there have only been 2 that had to be converted to open surgeries and that was because of bleeding. As far as surgeries where another organ or artery was damaged during surgery? He said that's never happened at Mayo. I feel pretty good about those statistics, but I am very surprised that they have only performed 300 surgeries on living donors. That number just seems so low! The last step for the surgeon is to look at my CT scan with the surgical team to make sure my anatomy will allow for a safe surgery. From first glance, it looks good, but they want to make sure my arteries and blood vessels aren't positioned in a way that would make surgery difficult. 

After that, I had to attend a nutrition class. I thought it was going to teach me about what I should or shouldn't eat after having only one kidney, but instead the class was focused on people who are on dialysis and/or receiving a kidney. It did help give me a perspective on how closely people on dialysis have to watch their diet, as well as after they receive their transplant. 

My last appointment of the day was with Dr. Wadei, to go over my test results so far. According to him, I'm in perfect health, and I'm an ideal candidate for living donation. He said they couldn't wish for anyone more healthy. My glucose is normal, my blood pressure is good, my cholesterol is good, all of my organs look good and are functioning normally, I don't have any diseases such as hepatitis, STDs, HIV, etc. He even said the level of protein that showed up in my urine was nothing to be concerned about, and it was probably caused by dehydration. He did request that I have an updated PAP, as it's been over a year since my last one. Even though at my last appointment they said I only need one every 2 years, Mayo wanted me to have one just to be safe.

They were able to get me in for a PAP last week. I guess it's a good thing I had one, because they found a cyst/polyp on my cervix. The nurse said they could biopsy it now, or wait 6 months and see if it had changed or disappeared. Of course I chose to have it biopsied, because I knew I couldn't be approved as a donor if I had that lingering out there. Talk about a painful experience! That was definitely not how I wanted to spend my Friday, but better safe than sorry. I keep telling myself that's nothing, and that if it were bad or cancerous, something would have shown up on one of the zillions of things I've already been tested for. But, there's also a part of me that's wondering if this is going to be something, and that's the whole purpose behind me going through all of this. Maybe that's why it didn't work out for me to be tested for Raleigh Callaway, and maybe that's why I've been unable to decide if I want to start a donor chain, or donate to someone in particular. Maybe I'm not meant to donate, and I was compelled to go through this because there is something wrong with me that I needed to know about. I'm not saying that be negative, it's just what I've been thinking about the last few days. With that said, I'm anxiously waiting to get the biopsy results back so that I can hopefully breath a big sigh of relief! 

I have 2 days of testing left, and then it's a waiting game until the board decides if I'm approved! It's crazy to think that just about 2 months ago, this was not even a thought in my mind, and soon I'll know what the result will be!

Testing Days 2 & 3

Last week I completed my first 3 days of testing. I already posted about day 1, so now it's time to fill you in on days 2 & 3, which were definitely not as easy as the first day!

Day 2:

My first appointment of the day was to have blood drawn, and I had to fast for 12 hours, having nothing except water. This wouldn't have been such a big deal, except that I get migraines and one of my triggers is going too long without eating. I told myself I was most likely going to get one. Also, I hate having blood drawn. Hate it! I can remember having it done when I was little and screaming and throwing a fit before they even came close to sticking me with a needle. All morning I just keep telling myself it wasn't going to be a big deal, and it would be over with before I knew it. I have donated blood a few times, and this couldn't be as bad as that, right? As the nice little guy was getting me all ready, I just looked away the entire time. As long as I didn't see it happening, I figured I would be fine. I was for the first couple of minutes, but this was not just a typical blood draw where they fill up just one tube. I swear it felt like they were filling up 50 tubes! I started feeling lightheaded, but I just kept telling myself it would be done soon. Then I started breaking out in a sweat, and my ears started plugging up, a sure sign I was about to pass out. Eventually the guy realized I wasn't doing so well, so he started fanning me off and opened up an alcohol wipe and placed it under my nose. Luckily, that did the trick and I started feeling better shortly after. This experience does not make me look forward to my next fasting blood draw later this week, but I'll make sure to have some of those alcohol wipes close by! 

After that was over, I had to give a urine sample, and then they gave me this nifty, rather large red container and explained that I have to use it to collect all of my urine for the next 24 hours. Yes, every time I have to pee, I have to pee into a cup and dump it in this container. Thankfully I ended up taking the whole day off work, because I certainly would not want to have to carry that around with me! 

By this time I was absolutely starving, and could feel a headache coming on. Unfortunately, I couldn't eat or drink anything yet because I had a CT angio coming up. I've had CT scans before, but this was my first one where they injected the contrast along with it. They gave me an entire outfit to change into. Pants, gown, robe & booties. I was so thankful to have something with more coverage, so I didn't have to worry about flashing everyone like the day before. As I'm putting on the pants, I quickly realize they are way too small. I thought I could make them work, but could barely squeeze them over my hips and I knew if I sat down I would rip them! As I bent down to grab my clothes and leave the room, they totally ripped, haha. The lady started laughing, and kindly gave me a new pair that fit much better. 

After I was all changed and situated, they got an IV started in my arm. I had a much better experience with that than I did when they drew blood. After that I had to sit around and wait for a while, but while I was waiting, a lady came around with a dog to visit all the patients in the waiting room. I can't remember what type of dog it was, but it was so stinkin cute. The rescue group brings dogs in to Mayo every day to visit with the patients. I thought that was neat. It was finally time for me to go back for my scan. Once I was on the table, they hooked up my IV, and told me what to expect once they injected the contrast. They said I would have a funny taste in my mouth, and my body would get really warm. First they injected saline, and it was really weird to feel the cool sensation move throughout my body. Next came the contrast, and sure enough I had the weird taste in my mouth and my body was instantly warm. One thing I heard happens, but forgot about it and the nurse never said anything about it, was that having the contrast injected can make you feel like you are peeing. I guess because they inject it so fast and the way it rushes through your body can cause that. Sure enough, that's exactly how it felt. I would have bet money that I seriously peed all over the table. It was the weirdest feeling ever! It all only lasted a couple of minutes, then I felt like normal again. 

After that I was done for the day. I ate something right away, to try and help myself feel better, but by that point my migraine was just about full force. I went home, with my big red jug, and went right to sleep. Unfortunately, the nap didn't help with my headache. I tried all of my usual tricks...a hot bath, heating pad over my face, my head massage helmet, nothing worked. I even called my mom, just to talk to someone for a while in hopes that occupying my mind with something else would help. Nope. Finally, I broke down and took a Goody's headache powder and went back to sleep. Finally, around 8pm I started feeling better and was able to get out of bed and function. I haven't had a migraine that bad in a while. What a rough day!

Day 3:

I was dreading this day. I had a test originally scheduled for mid October, and it was moved up because they had an opening in their schedule. It was an Iothalamate renal clearance test. I had no clue what this procedure was or how it was done, and I couldn't really find anything online about it either. So, I was a bit anxious. It turned out to be one of the easiest things I've had to do so far! I basically got to sit in a recliner, kick my feet up, and watch TV for a couple of hours. 

Of course, there was other stuff going on too, it wasn't quite that easy. I had to give a urine sample to start off, and then while I sat there I had to continually sip on something. I chose ginger ale. After an hour, the nurse came in, took a urine sample, and drew my blood. This blood draw was much smaller than the day before, thankfully! Then it was back to drinking again for another hour. After an hour, same thing. Urine sample and blood draw. Then, she did a quick ultrasound of my bladder, and I was all done. Not scary at all! My nurses name was Sara, and she was just so amazed at what I was doing. She was so sweet. She shared some stories with me about transplants that have happened at Mayo. Pretty amazing stuff. She also started telling me about a lady who was currently across the hall going through the same testing I was. She was being tested in hopes of donating to her husband. She asked if I'd like to meet her, to get an idea of what it's like to live with someone who is on dialysis. I said of course! She brought her over and introduced us. Her name is LaDonna. She told me a little about her husband. He's 43, and I believe she said he has dialysis 3 days a week. I believe she said he has kidney failure due to hypertension. His son was tested, but he was not a match. LaDonna went in to be tested (without telling her husband) and she turned out to be a match! She shared the news with her husband, and now she's undergoing all of the same testing I am to see if she can be approved as a donor. We exchanged information so that we can keep in touch. It's so nice to have someone who is going through exactly the same thing I am. I'm looking forward to following her journey, and I pray everything works out for her and her husband. 

My last appointment for the week was to get my 24 hour blood pressure monitor. I hate to complain about something so minor when there are so many people out there suffering things much worse, but this monitor was so annoying! It would randomly go off every 3 to 30 minutes. Whenever it started, I had to stop what I was doing and stand still until it was done. I barely got any sleep that night. I wore it to work the next day, since I had to have it on until 2pm that day. Not a lot of people at work know that I'm going through testing, and it don't think most people noticed the bp monitor, but I did have a meeting that day, and of course it went off a couple of times. It was funny to watch everyone looking around to see where the noise was coming from, until I explained to them I was wearing a bp monitor. I was very glad to be able to take it off!

This post has taken me a long time to write, seeing as it's almost been a whole week since all of this happened! Last week was exhausting, and I guess I needed a break. I go back to Mayo tomorrow for some more appointments, so I'll try to update everyone again tomorrow evening. Tomorrow is also another fasting blood draw, let's hope it goes better than last week! 

Testing Day 1

Day 1 of my testing is complete! Today was pretty easy breezy, considering I spent a majority of my time just sitting around waiting. I arrived at 6:45am for my 7:15am check in, and had everything completed by 7, so I had to sit around and wait for my first appointment at 8:30. They had me start by watching a video about becoming a donor, and it walked through a few of the different people I'll have appointments with over the next couple of weeks. Then, I met with Dr. Prendergast. She gave me a brief physical exam, and then went through a bunch of questions with me. We went through my medical history, some family history, and why I wanted to become a kidney donor. She had not heard the Callaway family's story, so I told her all about it, and how it inspired me to become a donor. She was truly amazed at how many people responded to their story, and how many people have said they would like to become donors because of it. We went through the questions I have so far, mostly about what type of donor I want to be. They would love for me to start a donor chain, but it's completely up to me if I want to do that. Honestly, I'm having a really hard time deciding what to do. I really like the idea of starting a chain, and being able to help many different people, and I'm a perfect candidate for that because of my blood type. But I also like the idea of being able to choose to donate to an individual too. I would be able to pick if I want to donate to someone higher up on the transplant list, or someone lower on the list. I know that no matter what I choose, I'm going to help save someone's life, it's just difficult to decide what path to take!  It was also made very clear to me that I can back out of this at anytime. I don't foresee myself doing that, but it's nice to know they will support my decision if I do.

After I was done meeting with the doctor, I got to meet Rhonda, who is the person I initially spoke to when I first called Mayo. She seemed very excited to meet me, and she's also excited about the idea of me becoming the start of a donor chain. She said there was recently a meeting or conference call among the different Mayo transplant centers and she brought up my situation, and they were all hoping I would be O+ so I could potentially start a chain. She was also able to move up my last testing appointment (originally scheduled for mid October) so that I can now get everything done in the next couple of weeks. Once I'm completed with my testing and all of my results are back, she will send all of my information to their board for approval. Once I'm approved, they will either match me with an individual and the surgery could take place in 4-6 weeks, or if I decide to start a chain, they will start going through the process of matching and pairing people up for the chain, which will take a little longer.  She also added a nutrition class to my itinerary. It's something they are now having potential donors go through. I can always use some nutrition education!

My other appointments today were an EKG, a chest x-ray, and an ultrasound of my kidneys. I was surprised at how quick the EKG was. I don't even think it was 2 minutes! Then, on my way back to x-ray waiting area, I had a slight wardrobe malfunction, and pretty much ended up flashing everyone who was sitting in the hallway, lol! I could not for the life of me figure out how to properly tie up the gown (really, can anyone??) so everyone got an eye full, for god knows how long until I finally noticed.  Talk about being mortified!  Then it was another 2 hour wait before my ultrasound. The ultrasound confirmed I do have 2 kidneys, so no surprises there! The ultrasound will help them determine if my anatomy will allow them to perform the surgery, and also so they can decide which kidney they are going to take.  I was trying to look at the screen as he was doing the ultrasound, to see if I could guess which one they would take based in what they looked like.  I'm going to guess they will take the right one. We'll see if I'm right!

Like I said, today was pretty easy. Tomorrow & Wednesday, probably not so much! I'm am dreading tomorrow. I can't eat or drink anything other than water after 8pm, because I'm having a fasting blood test done at 8am. Then, I can't eat or drink anything 2 hours before my CT angiogram at 9:50am, so that means I can't have anything after my blood test because it's within the 2 hour window. It's going to be a long 15 hours! I'm going to be "hangry!"  :)

I'll let everyone know how tomorrow goes!

Only a few more days!

It's been a while since I've posted anything, but I really haven't had any new updates. Once they ordered my testing, things started moving. I was called right away to get everything scheduled, and recieved my itinerary in the mail a few days later. Everything starts on Monday! All together I have about 20 different appointments, stretched out over 7 days. Of course most of these days are not going to be consecutive, so it will be a lot of back and forth to Mayo. I'm still feeling really good and positive about my decision, but I admit I'm a little nervous about all of the testing. It's not so much the actual tests that worry me. It's the fact that you never know what they might find during all of it. I'm sure everything will be fine, and I won't discover I have some disease or condition I was unaware of, but there is always a slim chance! Mostly, I'm excited to finally get started with everything and become one step closer to saving someone's life!

I've been talking with the girl I know from back home who donated her kidney a little over 3 weeks ago, and it's definitely helped eased some of my worries. It's nice to have someone to ask questions, and to give honest answers about her experience. Overall, she said it was an amazing experience!

I've continued to follow the Callaway family and their journey to find a donor for Raleigh. For those who don't know, this is the family whose story inspired me to start this whole process. From the last posts I saw, it sounds like they have a potential donor match and they are ready to move forward with the final testing. My prayers are with this family and I'm hoping everything works out very soon!

I'll try to update this each day after my testing. Wish me luck!

My testing has been ordered!

My testing has officially been ordered!! I heard from the Mayo Clinic this morning, and they let me know they have put in an order for my testing. It will happen in about 4 weeks, unless something opens up sooner. It also sounds like it may not be 4-5 entire days of testing. Some days might just have one test scheduled, so I can hopefully work with the scheduling department and get everything crammed into as few days as possible. I'm hoping these next few weeks go by fast, because I am beyond ready to get this started!

Finally, a call back!

I have been patiently waiting (or at least trying to) for the past week to get a call back from the Mayo clinic. I would be lying if I said I wasn't a bit frustrated that it has been a week since I gave them my information to start the registration process and I have yet to receive a phone call. Then, at 4:55pm today they finally called! It turns out the lady who I've left messages for is still not back in the office and will be out for a few more weeks, so I had sort of fallen through the cracks. I talked with Rhonda, who was the person I initially spoke with at Mayo. We went through a lot of the same information that we did before (height, weight, blood type, etc) but this time I was able to complete the initial health screening. She went through a pretty extensive list of diseases and illnesses with me, to find out if I had ever had any of them, and thankfully I was able to say no to every single one. So, I passed my first screening! One hurdle down, many more to go. Since this whole process is not something she does on a daily basis, she said she would put a call in to the doctor to find out what needs to be done to have my testing scheduled at the clinic. She said she should have some information for me either tomorrow or Wednesday. I was able to ask her a couple of my questions. First of all, once I'm tested, am I matched against a national list, or just with people who are on the Mayo Clinic's list? She said they share a program with some other locations around the country, so I will matched against their combined list. My next question was if the recipient is not someone local, would I have to travel to wherever they are for the surgery. The answer is no. I would have the surgery here in Jacksonville, and they would fly my kidney to wherever the recipient is. She also mentioned that as a non-directed donor (meaning I have decided to selflessly donate my kidney, with no one specific for it to go to) I have the opportunity to start a donation chain. I had heard of this, but honestly I wasn't really sure how it worked. I still am not quite sure about all of the specifics, but the basic idea is that in order for someone to receive my kidney, they have to have someone in their life who is willing to donate a kidney to someone else. In order for that recipient to receive the kidney, they have to have someone willing to donate to someone else, and it goes on and on. The country's longest chain is actually currently going on, with 42 donors and recipients who have taken part between December 2013 and June 2014. It's a cool idea, and definitely something I'd like to learn more about.

Another cool thing that happened today is I learned from my mom that a girl from my hometown in Ohio

happens to be donating a kidney tomorrow! She is a friend of my younger brother, and I was able to get in 

touch with her earlier this evening. I don't know much about her story and why she's donating, but I know

she's do aging to a complete stranger. How awesome is that? I'm wishing her the best, and looking forward

to hearing about her experience and recovery first hand!

I'm glad things finally seem to be progressing, even if it's just a little bit! Again, thank you to everyone who has taken the time to read and share this. I can't tell you how much it means to me to have this amazing outpouring of support.

If you'd like to learn more about the kidney chain I was referring to, you can read more about it here.

Moving forward, slowly but surely!

Not much of an update, but I did briefly speak with someone at the Mayo Clinic today, so I wanted to share. I was able to give the transplant center some of my information today, and they will enter that into their system and I'll be officially registered. After that happens, I'll receive a call from the donor coordinator and she'll go through some questions with be about my medical history. From that point, a kit will be sent to me to take to a lab to give blood and tissue samples, and the results will be sent to Mayo. It typically takes 7-10 days to get the results back. Assuming my results are good and I don't have any unforeseen illness that would prevent me from donating, the next step will be the 4-5 days of testing at the hospital. I won't need to be admitted, it's all outpatient type of stuff, but it will be 4-5 full days there. I still have a lot of questions about this whole process, so I'm really anxious to get to talk to the donor coordinator and get started with everything. I'm learning very quickly that is going to be a long process, and that I really need to have patience. I'm also learning that I need to stop researching and reading living kidney donor blogs right before bed, because then my mind starts going in a million different directions and it's impossible to go to sleep!

I started the Couch to 5k program (again) tonight, and it felt great! Over the last year I've really focused a lot on being healthier and exercising more, and have lost quite a bit of weight. I did this all before I ever even thought of becoming a donor, but now that I have I'm even more glad that I made those changes. I know it's very important to keep myself healthy, now more than ever. It will be beneficial to my recovery, but more importantly it will ensure that I'm giving someone the healthiest kidney I possibly can! :)

All I can say is WOW!

All I can say is WOW! I am completely overwhelmed with the response I've received since sharing my story. I must admit that I was hesitant to even share my post because I didn't want people to think I was doing it just to get attention or a pat on the back. Looking back at all that has happened over the few days since I went public with my decision, I am so thankful that I shared. My page received almost 500 views in 24 hours, and it's been viewed by people in 6 different countries. That is so crazy!! I never would have imagined that. I am so thankful to know that there are so many people out there supporting me. It's been great to see the responses and hear stories from people who I have never met, as well as from people I do know, but had no idea that kidney disease has impacted their life. Thank you, thank you, thank you to everyone who has taken the time to read my story.


I'm anxiously awaiting tomorrow afternoon, when I can speak to the donor coordinator at the Mayo Clinic to get some questions answered and hopefully get some of my testing scheduled. To anyone reading this who is a living donor, are there any questions you asked that you feel are important, or things you wish you would have asked right away? I have a list of questions, but I'm sure there are many things and situations that I haven't thought of yet. Please feel free to share in the comments, or you can email me at karirobbins80@gmail.com. I'm looking forward to updating everyone after my call tomorrow!

My big decision

Have you ever thought about being an organ donor? I haven't. Sure, my driver's license says I'm an organ donor, but that wouldn't happen until after I die so it's not something I ever really out much thought into. That all changed for me a couple of weeks ago.

Sometime last year, I saw a post on someone's Facebook page. It was from a gentleman who had a son who needed a kidney transplant. He was asking my friend to please share his information in hopes of finding a donor. I had no idea who this person was, but I figured it couldn't hurt to reach out and get more information. I knew nothing about kidney donation, but I emailed the man and asked for more information on how I could be tested to see if I was a match for his son. I never heard anything back, and never thought about it again.

A couple of weeks ago, I came across a story that a local news station here in Jacksonville had shared on their Facebook page. It was a story about a father in Georgia who us in stage 5 kidney failure. He and his family reached out through social media in hopes of finding a donor. Within minutes of reading the story, I found myself sending an email to his wife to find out who I needed to contact to be tested. I had no idea who this family was, but their story touched my heart, and I just felt this was something I was supposed to do. A couple of days later I received an email back from the wife with the contact information for the transplant hospital in Atlanta. I was so touched that she took the time to personally respond to me. First thing that Monday morning, I called Emory hospital. Right away they knew who I was calling about. This story became so widespread that Emory was flooded with calls. They took down my contact information and said someone would call me back to start the interview process. In the meantime, I was in contact with the wife, and she provided some paperwork that the hospital would be going over with me during the initial call. I filled it out and sent it back in right away, in hopes of speeding up the process. After a couple days and still not hearing back, I reached out to the wife to see if she had any insight on how long it should be until I hear from someone. She shared with me that the hospital felt very optimistic that they have found a match from the number of people they had already interviewed, which is amazing news for this family! She suggested that if this was something I really wanted to do, I could reach out to Emory to see about becoming an anonymous donor for someone else on the list that I might be a match for. I filled out some additional paperwork to get that process started. Then I started having questions. With this particular family, it sounds like I would have been able to go through a lot of the testing here in Jacksonville, and then travel to Atlanta for the actual surgery. I wasn't sure if that would be the process if I was an anonymous donor. I reached out to Emory with my questions, and was told that I would need to do all of my testing and appointments in Atlanta, which means I would need to make several trips there. Atlanta is only a few hours away, but it would difficult for me to have to keep taking time off work to travel to Atlanta. It just didn't seem like an ideal situation.

At this point, I started asking myself if I was serious about this, and why I wanted to do this. The only reason I could come up with is that I have this overwhelming feeling that I am meant to do this. Maybe I'm crazy. Maybe this is God showing me the path I'm meant to take. Your guess is as good as mine! All I know is that when I read the story about the family in Georgia, I knew immediately that I wanted to do this. There was not even the tiniest bit of hesitation or doubt in my mind. Honestly, I don't think I've ever been so sure of anything in my life. I find that I've always struggled with what I want to do with my life, and what my passion is. It wasn't until I moved to Jacksonville and started discovering and getting involved in different volunteer opportunities throughout the city that I realized my passion is giving and helping others. I'm truly happiest when I'm giving to others,  without expecting anything in return. This certainly hasn't always been the case throughout my life, and I still have a lot of work yet to do, but I'd like to think I've grown a lot as a person over the years, and I know now what's truly important in life.

Now that I've made my decision, and I'm 150% sure this is what I want to, it's time to make this happen! I'm (hopefully) going to be a living kidney donor, and I'm sooooo excited about it!! I decided that looking for a place a little closer to home would be the best idea, and it turns out the Mayo Clinic here in Jacksonville has a transplant program. I talked with them earlier this week. The donor coordinator is out this week, but I was able to talk to someone and they explained a little bit about the process. A lot of it I already knew about because I've been doing lots of research the past couple of weeks, but basically I will start by calling the coordinator on Monday to discuss everything with her and schedule my testing. There will be 4-5 days of testing, which includes 24 hour blood pressure monitoring, urine testing, lots of blood testing, chest X-ray, glucose testing, CT angiogram, psychological exam and the list goes on and on and on. They will need to make sure that my body and my insides will be able to have a laparoscopic surgery, because that is the only type they perform there. They'll need to make sure I'm not as risk for any disease that could affect the recipient down the road, and most importantly they need to test my blood & tissues to see if I'm a suitable match for anyone on the donor list. My blood type is the universal donor, so that's a promising sign that I'll be a match. This will be a completely anonymous donation, meaning I may never know who the recipient is or ever meet them, unless we mutually agree that we would like to meet. I would absolutely love to meet them, but I'm also ok with not knowing who they are. Even though this is a major surgery, living with one kidney shouldn't affect my life in any way. There shouldn't be any issues if I ever get pregnant, I should be back to work 2 weeks after surgery, and able to get back to exercising and my normal activities shortly after that. That doesn't sound too bad of an exchange for saving a life! I'm excited to speak with the donor coordinator on Monday and see when I can start scheduling my testing.

I've shared my decision with my parents and siblings, as well as a handful of other people. I have everyone's support, which is very important to me. As excited as I am about this now, I'm sure there will come a time where I'm going to nervous and scared out of my mind, so it's reassuring knowing I have people to support me. I decided to dust off my old blog, and use it to document my journey. Not only am I doing this to be able to share with my family and friends, but also as an outlet for my thoughts and feelings as I'm going through this experience. As I've been doing research, I've come across a lot of donor blogs, and it was really great to hear from other people who donated. I hope that mine can do the same for anyone else out there who is considering kidney donation.