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!