It finally happened!!!!

I started this post a couple of weeks after my transplant, which was June 5, 2022. It has now been a year and I’m finally publishing it. It’s been a whirlwind year, starting from the evening I received the call. But here is the gist of what happened afterwards and a bit since.

This post is more for me to remember the last few weeks. But if you’re reading, awesome. I’m still in shock and I feel like the reality of my new life is slowly setting in.

A quick recap…I had to start dialysis in November. I tried peritoneal dialysis for less than a month and that sucked so I needed to get a chest catheter to go to in clinic hemo dialysis. That was so much better. Cayden and I were finishing up testing again so she could be my donor as planned. I was forced to get the Covid vaccine as well as the booster in order to be transplanted. They finished up the testing by checking my antibodies again. We found out that I now was highly sensitized and was no longer a match with Cayden. Oof! Being highly sensitized means that it would be very difficult to find a match. After being angry and sad, I accepted my new life of being on dialysis with no end in sight.

I had a zoom appointment with one of the transplant nurses in May and I found out I was already almost 5 years on the waiting list. What?!? That was such good news. As a highly sensitized patient, I also have priority on the list after pediatric patients. I still wasn’t ever expecting to get the call. Ever!

The weekend of June 3, Eric, Tucker, and I headed to Livermore for Tuck’s state trap shooting event. Chloe stayed home to go to graduation parties. She just graduated from high school the previous Thursday. What?!? We also just listed our house for sale the day before we left. It was already a busy weekend.

Day one of Tuck’s shoot was completed and he did awesome. Eric went to dinner with our friend, Ryan who lives in the area. Tuck and I stayed back in our trailer to play games and hang out. We had just finished a game of War, (which I won) and I got a phone call from a number in Louisiana. Of course I didn’t answer because, that’s weird. And of course I googled the number because that what you do. It came back to a nurse which I thought was weird. But I didn’t think anything of it. Then I got a text. THE text.

I immediately had Tucker call Eric and tell him I got the call. As he was calling, I was calling the nurse back. She told me they found a match and began asking me a bunch of questions. I told her we were about an hour and a half away and she said that wasn’t a problem. They were waiting for the final match results which came in while I was talking to her. They would review and let me know.

In the meantime, Tuck and I were frantically packing up our trailer so we could hit the road. Eric was heading back and the first person I called was Chloe, then of course Elizabeth. And wouldn’t you know it, she didn’t answer because we never call each other. Hahaha! I texted her saying I didn’t butt dial her. Of course when she called me back within a minute, she said she didn’t answer because she thought I butt dialed her. Hahaha!

Then it hit me. Someone’s loved one just died. That was the reason I got the call. I prayed for them and their family. I couldn’t imagine what they were going through that evening.

When we got to UCDavis around 9pm, Eric had to just drop me off because he had the trailer and our pup, Ellie. Chloe met us there so I could get hugs. It was such an odd feeling walking into the hospital for a life altering surgery and I was by myself. Very surreal. When I got up to the transplant floor, I was greeted by the most amazing nurses. Seriously amazing!!!! They were so sweet and helpful. Which I really needed. I was still in shock about what was happening. One of the doctors came in and explained the next few steps before surgery. And he said the kidney was there in the hospital. I went and got a chest X-ray first. Then the nurses tried to draw blood. Lots of blood. It took a really long time to get anything. I felt bad, but being on dialysis, it’s difficult to draw blood. Really just trying to find a good vein was hard enough. Of course I had to take a Covid test. I had to do some sort of fitness test. The first one was a sit test. Where I had to sit and stand up from a chair and they counted how many times I did it in 30 seconds. Weird. Then I had to walk in the hallway from certain points and they counted how many times within 6 minutes. Apparently I passed. Haha!

I napped for a bit while waiting to go into surgery. Finally around 3:15am the doctor came and got me. Once we got to the hallway of the OR, we found out that there was a delay. Someone else wheeled me into the recovery area to wait. It was super quiet. I just watched the clock. They did check on me a couple of times. One of the anesthesiologist stopped by to ask questions. I didn’t know that UCD had already called Eric to tell him I was going in at 3:30. So later that morning he was starting to worry because he hadn’t heard anything and I should have been out of surgery already. Finally around 5:30, the other anesthesiologist came by to let me know they were ready. He gave me some meds through my IV and the next thing I remember was waking up in my room.

My new kidney was working. Oh man! What a miracle. I wasn’t in much pain because they put in a nerve block. Can I just say, I love nerve blocks!!!! I had one when they put in my fistula last month. They are amazing. Once I was awake enough, I called Eric. He wasn’t there with me because we had some showings of our house and we needed to keep our dog, Ellie Mae, out of the house. So Eric was dealing with all of that stuff while I was recovering. I was actually feeling pretty good. I met my wonderful roommate, Tiffani, who had gotten a kidney about 7 years ago from her husband. She was there just dealing with some other stuff. It was nice to have someone to talk to. My parents were in town from Idaho for Chloe’s graduation and Tucker’s promotion from eighth grade, so they were my first visitors. Eric was finally able to come later on that afternoon.

Most of my recovery in the hospital went well. My kidney was working really well right from the beginning. They even said that they were going to take my chest catheter out while I was there. That ended up being one of the worst experiences I’ve ever felt in the hospital. I won’t go into too much detail, but I definitely should have been put under or given more than a couple of lidocaine shots. It took way longer than expected and was much more painful than expected. The doctor was literally digging into my chest and pulling the catheter for an hour. I tried not to cuss, I tried not cry, but I definitely didn’t scream, which I definitely wanted to do. I felt really bad for the doctor because there was nothing else he could do. And to top it off, I really needed to go to the bathroom. I had been given lasix because the excess fluid wasn’t coming off and I was having chest pain from it. Oh man, the poor doctor. I was not his favorite patient that day. He had to go into the bathroom with me and wait until I emptied my bladder. Thankfully after having two kids and the millions of surgeries I’ve had, I didn’t care if he was there or not. I HAD to go.

All while I was in the hospital, we were getting offers on our house. Our friend and realtor, Kristen was amazing and helping us navigate through everything. We just love her. It had been a very hectic week with the showings, my surgery, Tucker’s promotion, and life, so we were very grateful Kristen was there to be our calm.

I finally busted out of the hospital and wouldn’t you know it, both Eric and Tucker got covid for the first time. That made my recovery and just being at home a bit more difficult. But we are Baade’s and can get through anything.

Our first family picture after my transplant and Eric’s last Hometown Parade before he retired the following month.

And back to present day. My kidney is doing amazing. My kidney function is around 69%. I’ve had some GI issues but we’ve been slowing getting that figured out. I was hoping to be able to do Ironman Texas last April, but had to stop training due to my GI issues. I’m planning on doing Ironman California in October in honor of my donor.

I haven’t decided if I’ll keep writing this blog. I definitely wanted to write this post since it was such big news. But we will see if I feel like posting anymore. Thanks for taking the time to read.

And a huge thank you to my donor. I think about you every day and I pray every day for your family. I do hope the family wants to meet some day. It would be amazing to be able to thank them in person.

Quick update…

My posts are getting a little too far apart. My last one was super intense and then I never did a follow up. I suck and I’m sorry about that. Thanks to everyone who responded and checked in. I appreciated everyone’s input and positive thoughts. Your words, check ins, and your own stories meant the world to me. All of this is just a lot. Some days are great and I feel good, but other days just suck ass. But I did end up going to the doctor and getting a prescription for Zoloft. I tried it for two weeks. Probably one week too long. It’s not what my brain needed. I felt like I was getting more depressed and had way too many weird thoughts going through my head. I was glad I tried it, but that brand wasn’t for me. I’m sure there are other types of anti-depressants I could have tried, but I decided not to go that route.

Not only have I been struggling with this damn kidney failure, but I’ve been trying to work on my marriage as well. I won’t go into all of that (lots of you already know) and maybe I will later…to a point. My new way of being a grumpass was basically always being a bitch to the one person I could always rely on, who supported me, who loved me, who always sat next to me when I’d get cut open, who did all the parent duties when I didn’t feel good, and who always put up with my crap. I can’t even tell you how much my husband has put up with. The list is endless. I finally snapped out of my grumpass funk when Eric said he was leaving. Yep, he was done. I won’t go into all that either and maybe I will in another post. I couldn’t keep taking everything out on him. It wasn’t fair to him, to us, or to my family. I needed to change. I needed to start living again.

So living is what I’m doing. Eric didn’t leave, I am working on not being a mega bitch, and I’ve got lots to look forward to. Since I’ve gotten away from the purpose of this blog for a bit, I’ll go back to the purpose now. 🙂 Here’s the latest on Mr. Wiggles. This year my kidney function has been going back and forth from 16%-21%.

This is pretty much stable. And I’m just tired of waiting. If I’m going to be at this function, I’ve decided to register for another Ironman. Yep, I’m back at it. I registered for Ironman Santa Rosa in July.

I’m also planning on doing Ironman Santa Rosa 70.3 in May, I just haven’t registered for it yet. One thing at a time. These races are so damn expensive. Base training has started and I’m doing okay. The real training starts in January and I’ll be coming up with a training plan soon. I just need to realize that there will be some days that I cannot do a work out and I need to be okay with that. I also need to keep positive and say that I WILL be able to train for this race and I WILL be able to finish. I’m really excited about it. It feels good to have a purpose again and not just try to get through the day. Plus, Elizabeth is doing Ironman Lake Placid that’s the same weekend as Santa Rosa so once again we get to train together. Woohoo!!!!

But I do have a bit of stupid news. I’m going to the dermatologist every three months now. The last time I went I had 6 or 7 new skin cancer spots. I can’t even remember how many I had. I did have all those removed except for one. We didn’t get all of it. Urg! Then I went back and found two more. One more on my face and one more near my scalp on my forehead. This will be my second one on my face and fifth one on my scalp. I have huge holes in my head now and huge bald spots. I’m running out of hair to cover them all. My next surgery is on Monday, December 2nd. The good news is I’ll be healed by the time Ironman training starts. Whew!

Since I’ll be back to Ironman training…the purpose of this blog, I’ll be back to posting more. I know it will be more of a struggle to train, but I’m ready for it. I’ll probably be adding more about life stuff since I’ve written a bit about it already. I’ve always been an open book about my struggles with my health, I might as well add my other life struggles too.

I know, I know, it’s been a long time since I’ve posted an update. This one is going to be rough to write. I’m not looking for sympathy, just letting you all know where I’m at since you all ask how I’m doing. The short answer is good. Labs are stable for the most part. My medications changed a little bit, but overall, I’m the same. I feel much better than I did about a year ago. I go longer periods of time between when I’m worn out and just need to sleep.

I’m still running and doing Crossfit. Well not so much the last couple of weeks. Life has gotten in the way and we went to Disneyland for a week. Working out has helped a ton as well as eating better. I find that when I don’t eat processed foods, I feel so much better. But I’m sure that’s with everyone.

But the long answer and the real answer….I’m really miserable. Life is difficult to plan when I never know how I’m going to feel. We got back from our trip and I ended up sleeping for about three days just trying to recover. Everything I planned on doing during that time was postponed or I just didn’t get it done. I’m tired of not knowing what the future will be. I feel horrible that Cayden has to wait for the donation. She can’t really plan either. She will have to do all of her testing over again since it’s been so long. The transplant is inevitable, we just don’t know when.

I go through bouts of depression now. Sometimes it lasts for a week and lately it’s been lasting longer. I feel bad for my family having to put up with me. I’m really angry all the time and I don’t want to be around anyone. I do see my friends sometimes, but I don’t talk to them about this crap. I know my friends will listen, but I’m tired of talking about it. There’s nothing new to say. It’s easier to just not talk or just not even be around my friends. Eric said I should try getting on some anti depressants. I know he’s right. I make everyone around me miserable. I’ve had a history of depression. I’m no where near where I was when I got that low, but I know I’m depressed. It sucks. It’s a weird feeling to be really sick and not be able to live a normal life, but not quiet sick enough to make yourself better. Everything is out of my control.

I’m usually a super happy and positive person. Most people can’t tell I’m sad or even sick. I’m really good at putting on a fake smile. There are just some days when I just can’t do that anymore.

I’m finding that I am enjoying trail running a lot more. I go out by myself with no music and no people around. I don’t worry about my pace and I just run. Some runs I don’t even see anyone and it’s awesome. A few years ago I would never have gone on a trail run by myself. There are fucking animals out there and who knows if anyone would find my body if a squirrel attacked me. Hahaha! KIDDING! But trail running has been a great outlet for me and I don’t have to put on a happy face out there.

We had finally planned our family trip to Hawaii. I was so looking forward to going. I wouldn’t have to think about anything kidney related. Just have fun with the family and our friends. But this time Eric got injured and tore his meniscus which requires surgery. Well, that meant our fun trip to Hawaii was postponed. We gave the kids an option of going somewhere closer for a family trip since they had a week off of school. Well, they chose Disneyland. Ugh! The most crowded place on earth and I really don’t want to be around people right now. But we did end up having fun and I pushed Eric in a wheelchair all over the park for three days. It was a good workout. I didn’t know that Disneyland had so many hills. We postponed our Hawaii trip until July, but I had really needed it now, just for my sanity.

Thankfully, I have tons to look forward to and do to keep my mind off of all this stuff and maybe even help with the depression. I know there are worse things that could be going on and I am very thankful that this is all I’m going through right now. Thank you everyone for checking in and being concerned. I appreciate you all so much!!!!

The Real Stuff

Just a quick update since people are asking, which I totally appreciate. Nothing really new. Labs were a little bit worse, but we still have a while before transplant. Basically I’m sick, but not quite sick enough.

The last two months have been pretty rough. I’ve been really sick. I had a tooth infection and actually had to have the tooth pulled. A week later I got a weird flu. Tuck had it the week before so I figured I would get it since I snuggled with him for two days. Oh and the kid always drinks out of my cup. URG!  My flu lasted much longer of course. Then I had another weird infection from getting my tooth pulled. Let me just say how fantastic it is to be immuno suppressed. URG! It’s so not. It was one thing after another. I couldn’t eat, I couldn’t work out, basically I just slept and just tried to get through the day.

Before all of this, I was all on track to run CIM this year.  I had ran 11 miles, been going to CrossFit and felt really good. Then September hit. CIM was my only race I had still planned on racing this entire year. I thought I could still at least do this one since my mileage was still good and I thought I could walk most of it if I needed to. Not now. I’m out. CIM is my absolute favorite race to do. The good news is Chloe and Eric are doing the relay so I’ll be out there on race day being the loudest spectator ever.

When I came to the realization that I couldn’t do CIM, it was tough. I was already struggling with just not feeling good. Then add the fact that I was missing a tooth and having to wear a retainer with a fake tooth. (Yes, I’m totally laughing at this now). And then add the fact that some of the hair around my cancer spots on the top of my head was growing back and sticking straight up.  I was sick, toothless, and had really bad hair. I felt like a complete mess and I looked like a mess too. I really just wanted to sleep and not see or talk to anyone. So add this crap on top of not being able to race all year or maybe even next year, it’s just sucked.

I eventually stopped feeling sorry for myself. I started feeling better. I’m running again and back to CrossFit (when work doesn’t get in the way) and making fun of my toothless smile. Oh and my hair looks good again. Whew!

This waiting and the unknown totally sucks ass! It’s put a weird hold on my life. I take life one month at a time. Sometimes one day at a time. There are days when I feel like I just can’t even move. Then I have days when I feel like a completely normal person. I’m so grateful for my family for taking on more than they should right now. I did book a trip to Hawaii in a couple of months so hopefully I still feel good enough by then to be able to go. We are all excited to have something to look forward to and something to take our minds off this dumb kidney thing.

And I’m sorry to disappoint you all but I have no pictures of my toothless smile or my bald head.  You can just imagine it.  That should be enough to keep you laughing a little bit.

Cute kid pic added to make you smile.  Thanks Meredith for capturing this moment. 

 

So I have a little bit of news….

Just kidding….it’s big news!!!!!!

I thought it was going to be a normal visit with my friend, Cayden, but nope.  She sprung some crazy news on me.  She told me she was a match.  Nuh uh!  No way!  She was fucking kidding me.

Let me back up a little bit and tell you a little bit about how and when Cayden and I met.  Waaayyy back in freshman year of high school, my Grandpa Cooper had told me that one of his students from his high school where he taught, was transferring to my high school.  That was a super long time ago and my memory of high school is not so clear.  I do remember we became the best of friends.  Had a whole lot of fun. Got in a whole lot of trouble, lots of which we won’t tell our kids. Ever! Poor choices that I made and a boy I met made us grow apart.  BUT….. nine years later when we were both about 6 months pregnant with our daughters we were both at a random baby store.  It was great seeing her and we exchanged phone numbers.  As she was writing her name down, Eric saw her last name.  It was the same last name as his childhood friend, Donald.  He asked if she knew Donald and she said it was her husband.  Yep, my childhood friend and Eric’s childhood friend were now married.  Cayden and I were due about the same time.  All these strange coincidences kept popping up.

Me and Cayden and we may or may not have been drinking.

 

Our girls, Chloe and Victoria, have been the best of friends since they were born and are now freshman together at the same high school their dad’s went to together.  Our youngest kids are even the same age.  It’s really just crazy.

Victoria and Chloe

So back to the present. Cayden is a match and she wants to donate.  As soon as the shock of her telling me she was a match, it all just made sense. Of course she’s a match. Cayden already went through the two crazy days of testing at UCDavis.  I’m still shocked that she was there for all that testing and didn’t tell me.  Ha!

What’s next you ask? Well, I’m actually feeling okay.  Aside from these last three days of me lying on the couch because I don’t have the energy to do anything. Usually I feel pretty good. My labs look decent and the transplant clinic put my transplant on hold. I’m doing labs every month, so we are taking it one month at a time. It’s awesome to know I have a donor ready to go. It’s really a huge relief.  I’ll be doing labs this week, so we will see if there are any changes.

The only thing I’m really worried about is losing the love of bacon.  See, Cayden doesn’t like bacon.  She really hates it. Elizabeth didn’t like bananas and I loved bananas, until after transplant. I stopped eating them and don’t even like the smell of them. Now, I know how much Cayden hates bacon and I’m super worried I’ll lose my love of it when I get her kidney.  Fingers crossed that doesn’t happen.

Thank you to everyone who signed up to test and thank you to all that did test.  I am still in awe of how many people wanted to save me.  I really do love you all!

That’s a wrap.

My testing for the transplant it done!!!!!

Last week was crazy!!!!  Last day of school for the kids, including Chloe’s 8th grade promotion ceremony.  On to high school she goes. AAAHHHHHH! In the mix of all the last day of school crazy, I had my psych evaluation. Yes, they let me out, to answer everyone’s question!!!!! I received numerous texts with that question after I told people I had that eval.  I have the best friends ever!

Then Thursday I had my final test. I thought it was simple stress test on the treadmill. No big deal, right? I had already been feeling nauseous and dizzy, yeah that’s back. So when I got to radiology, I had really just wanted to go back to bed.  The nurses explained to me what the test entailed and all I kept thinking was I was going to barf on the treadmill. They hooked me up to all these wires and started an IV. I got on the treadmill and began to walk. The nurse just said whatever happens, don’t stop walking. Oh, okay. That shouldn’t be too hard, right? Then some other guy put this radioactive dye into my IV. I’m still walking. Not stopping. Then I immediately felt my chest get tight. I couldn’t breathe very well. Nope, still not stopping. One of the nurses told me to keep my eyes open. What? I was closing my eyes???? I didn’t even know. The chest tightness didn’t last too long, but then the nausea got really bad. I kept walking. Thankfully it was a super slow walk. Then I was about to barf. And thankfully that went away. I don’t even think I was on the treadmill for more than 5 minutes before it was finally over.

Whew! I was so glad it was over. The nurse gave me some Sprite and some crackers and had me wait til the next step. I took a few sips of the Sprite, but felt awful. They called me back to get the last test. I had to lie down on my back for the first 15 minutes while the used a  nuclear medicine camera to check out my heart. That sucked! Still nauseous and not able to move. Just dumb! Then I had to turn on my stomach and that was even worse. I felt like shit. Yep, I’ll admit it. I shed some tears. Quietly. That side only took about 10 minutes. Then back to the waiting room to make sure the test went well. Once I found out all went well, the IV came out and I slowly walked out of the hospital and back to my car. I was so out of it, I went to a completely different side of the parking lot than my car was at. Don’t worry, I sat in my car for a bit until I felt safe enough to drive home. And as soon as I got home, I slept for 3 hours.

But now it’s over. No more testing until it gets closer to transplant. No, I still don’t know anything. I’m not sure if anyone is testing and if they are, I don’t know where they are in the process. I’m sure I will hear soon.

I’m back to feeling crappy. Like I said, the nausea is back. I’m not eating much. I’m trying, but I’m getting sick when I do. Otherwise I’m fine. This is all temporary. I know it could always be worse than this, so I’m grateful, I’m just nauseous.

I stopped riding my bike and of course no swimming.  I’m doing a slow run/walk every once in a while. This part sucked. I was really struggling not having anything to look forward to every day. I really enjoyed training and being with my friends. I had been contemplating joining CrossFit. I thought it would still be a really hard workout, but wouldn’t be as long of one as Ironman training workouts were. One day I happened to actually be working when my friend, Linda Lee stopped in. I knew she did CrossFit, so we chatted about it. Before I knew it we had it figured out when my first workout was going to be.

I seem to do a lot of things out of my comfort zone and CrossFit definitely was. After the first workout, I was hooked. I couldn’t wait to go back. It gave me something to look forward to. I really suck at it. I’m not coordinated at all as some have seen on my headstand video. Yeah, still can’t do those fucking headstands. That’s how uncoordinated I am. I still can’t figure out how to do some of the stuff, but I keep going back. The coaches have been really helpful and so have all of the members. It takes me longer to do most of the workouts than everyone else since I’m taking breaks, just trying either not to throw up or I’m super dizzy. But I keep powering through it. That’s all I can do.

Thank you to all who have checked on me and who keep me in their thoughts. I wish I had more answers and more to say about the transplant itself. I’m sure I will soon.

 

 

Oh man, so much has happened since my last blog post.  An amazing friend in the transplant biz read my last post and suggested I contact my nephrologist to ask to start the transplant process.  My nephrologist responded very quickly and it’s been a whirlwind since. UC Davis had an opening the following Monday to do the evaluation at the transplant clinic.  Eric was out of town that day so I went by myself.  They want the recipient’s support person there at the evaluation, but since we’ve done this before, we could just reschedule the appointment with social worker.  They just want to meet him and make sure he exists. Anyways, the evaluation included a meeting with the dietitian, transplant information class, doctor evaluation and a meeting with a social worker.  This all went pretty quickly.  It was mostly just waiting around for the next appointment.

Today I did some super important blood work for Blood Source called HLA matching. Basically, this identifies my antigens and can be matched with my potential donor’s antigens. I was super excited to get this test.  Now if anyone has already had their blood test done, they can see if anyone of those people would have any matching antigens.

 

So far with I’ve done a bunch of required testing already.

• Transplant Evaluation
• Echo cardiogram
• EKG
• Pap Smear
• HLA Test

I have a mammogram tomorrow and our rescheduled appointment with a social worker on May 11.  I just need a stress test and a psych exam and I’m all done.  Seriously, this is all going so fast. I spoke with a recipient coordinator and she wants all of my testing done by July 3. Hells yeah I’ll get it done!

Okay, so here’s what I know about the donor. There are 17 potential donors who signed up on the UCD website. Holy fuck!!!!!! 17!!!!!! That many people want to do this for me?!?!?!?!!?  I am in awe. I tear up even when I think about it. It’s just crazy to believe. But the number is all I know. The recipient coordinator and the donor coordinator don’t know what is happening with each other’s patients because of confidentially reasons. So I won’t know anything until I have a match. It’s exciting and scary all at the same time. Since I’m out of the loop on the donor stuff, I just wait.

Here’s how I’m feeling. It looks like my kidney function is holding steady. That’s good, but that number doesn’t mean much to me. How I’m feeling is what matters. I have some good days and some really bad days. My hemoglobin is super low so I will be starting on epogen shots. I’m hoping this starts helping my energy level. I’ve had these shots before so I’m hoping they are just once a week.  No big deal. Just a tiny needle in my stomach for a few seconds. The last two weeks I’ve had much more fluid retention. My post transplant nurse let me increase my lasix dosage. I’m now taking 60 mg of that.  UGH! I’ve been taking that dosage for a few days now and I don’t feel like it’s helping. I’ll have to message him again and let him know. It sucks when I feel like I don’t eat very much throughout the day, yet by the afternoon my clothes don’t fit anymore. It’s uncomfortable and just wears me out. And I get horrible heartburn. I can not eat for hours and then out of the blue I get heartburn. What. The. Fuck? I still get dizzy and nauseous throughout the day, but that just seems to be the norm for the last few months.

The good news is I felt somewhat normal enough to get some workouts in. That was good for my sanity. I’m hoping I can get some more workouts in this week too. At least for the sake of my family.  I think they all cheer behind my back when they see me loading my bike up in my car.

That’s the latest.  I’ll keep on posting since it’s just the easiest way to keep people in the loop.  I really can’t believe how many people even read this thing. I do really appreciate it and of course all the support and love we’ve been getting these last few months.  It’s just amazing.

 

 

 

I’m broken and I just want to be fixed.

It’s really not too much to ask.  When you’re sick, you just want to feel better, right?  Yeah, me too.  I’m in limbo right now. I’m healthy enough to not need a transplant, but sick enough to not live my normal life. It sucks ass!

I’ve put off writing this post because this stuff is emotional for me. I’ve had a lot of people asking for an update so here it is.  And I’m about to get real here for a bit.

I’m not really sure where to begin since life in general is pretty shitty.  I’ll just start with my latest labs. My function had been pretty stable even went up a little bit. Then I went for labs again this week and I’m down to 16% kidney function. The post transplant nurse has adjusted my meds yet again.  I’m nauseous, dizzy, no appetite, exhausted, and I get sick when I eat. The worst, though, is I just feel plain stupid.  There are times I’m in the middle of a conversation and I can’t figure out which word to say. I try to talk, but my brain feels like it has just completely stopped working. Then whoever I’m talking with just has to wait til I either give up or they can figure out what I’m trying to say. It is awful.

All I want to do all day is sleep.  I can’t of course, because, well, life.  I’ve been struggling the last few weeks with everything.  People ask me how I’m feeling and I immediately talk about how kidney failure has affected my training.  I know that sounds silly to most, but training has been a huge part of my life since I had my transplant.  I started training for my first marathon within the first year after transplant.  I realized a couple of weeks ago during a track workout, that I could no longer run.  I wasn’t able to complete even half of the workout.  I got in the car and immediately broke down. Up until that point, I thought I was just going to be a little slower during Ironman Texas.  And now I didn’t actually think I was going to be able to finish the race. The reality of kidney failure was setting in. When I would actually get in the pool, I was so dizzy, I struggled to even follow the black line. After so many years of cycling, you would think I would be getting faster, but my long rides have been getting slower.  It would take me 3 days to recover from those rides.  It was to the point where I couldn’t do anything but sit on the couch and snuggle with my dogs.

Two weeks ago, I went in to have a couple of skin cancer spots removed from my scalp. I’ve had this done once before and figured I’d be running and biking a few days after. The spot on the top of my head was so painful, I don’t think I even did much of anything for the first few days.  There was no way I could handle putting a helmet on top of the stitches.  I don’t even think my helmet would have fit since my head was so swollen. It was just miserable.

Since I wasn’t able to do any training while I was recovering, I finally made the heartbreaking decision to back out of Ironman Texas.  I had the option of deferring until next year, but since we don’t know when I’ll even be sick enough to have the transplant, Eric and I decided I would just withdraw all together.  It’s sucks!

Ironman training has become a way of life for me. It’s helped me keep my sanity. It’s my social time with my friends. It’s my therapy sessions. It’s something I look forward to when I wake up as well as something I dread. Without training, I’m feeling lost. I miss seeing my friends. I miss that excitement when I finish a workout, especially the long ones. Its always fun seeing how far I’ve pushed myself. I miss sweating. Yeah, sweating. I know it’s gross, but I miss it. I’m just completely lost and there’s nothing I can do right now to change it.

So I sit. I wait. I wait to get more sick. And it just completely sucks ass!

My doctor said to get people lined up to donate. No testing yet, just get ready. Ugh!  So those asking, my blood type is O+. If that’s your blood type and you’re willing to get tested, just wait. I’m hoping to start the process soon.

 

 

Mission: Save Mr. Wiggles

Wanna read the good news or the bad news first?  I’m not really sure if any of it is good news anyways, so here it is.

I went to see my nephrologist yesterday.  I was really nervous since this was my first appointment with my new doctor and I knew the lab results from Friday were not good.  Not good at all.  My new doctor gave it to me straight.  Since I had such a severe rejection in 2010, my kidney’s life expectancy was not expected to go much more than 10 years.  We are coming up on that anniversary in September.  He is going to do everything he can to get my kidney to the 10 year mark and hopefully longer.

So the plan:

• Labs often.  He has contacted the UCSF transplant team to order some other labs for me.  I need to make sure I don’t work out at least 12 hours before I do labs to get an accurate reading.
• Drink lots and lots of water.  I obviously already do this, but just need to keep doing it.
• Get my blood pressure under control.  It’s been high since I had the rejection.  I’ve tried a million different medications, but they either don’t work or they make me sleep all freaken day long.  Let’s hope he can find the right one.
• I’ve been struggling with fluid retention the last couple of months.  My doctor prescribed me lasix to help with that and hopefully my blood pressure.
• I need to cut back on my protein intake.  Does that mean I get to eat more ice cream?  Hmmmmm…

My doctor knows I race and will be watching how my labs are while I train.  If he tells me to stop, then I will.  Until then, I’m going to continue training for Ironman Texas in April.

Here’s how I’m doing…

I’m sad.  I’m mad. I’m scared. I’m completely devastated. I break down in tears when I think about it.  I feel like I’ve completely let Elizabeth down. It hurts my heart to know that she put her own life on the line to give me mine back for only 10 years.  Our transplant completely changed our lives and changed and inspired many others.  Our story is truly one of a kind.  I never imagined in a million years that I would have done all the things I’ve done these past few years all thanks to Elizabeth.

Oh man! My next donor has some really big shoes to fill.

I’ll keep you all updated if anything changes. Fingers crossed that I keep stable and that Mr. Wiggles still has some more time left.

This is your warning….

I’ve started dieting and Ironman training.  Let the grumpassness begin.

Since I stopped paying for my awesome triathlon coach, I’ve also stopped watching what I eat.  It’s not like I eat super badly, but I don’t eat how an athlete should eat.  I really just don’t wanna do it.  This last year I’ve really enjoyed the carbs and more alcohol than I really should.  Ice cream, cookies, bagels, and vodka are just sooooo yummy.   I’m sure I’ve even had all of those in one day.  Hmmmmm.

Lately I’ve felt that the extra few pounds have really effected my training.  Not that I’m supa fast or have ever been, but I’ve been faster especially at peak training.   Since Elizabeth and I signed up for Ironman Texas again, we both decided to try to lose the extra weight and get down to our “race weight.”   Not really sure if I can remember what that is, it’s been sooooooo long since I’ve been at that weight.

Ironman training started last week as well as my Ironman diet.  I know I feel much better when I eat metabolic and the weight comes off faster too.  So that’s what I started.  I find that when I start dieting I end up cutting way too many calories.  That leads to grumpassness, sleepiness, zombiness, and being hungry all the damn time.  I even dream about food.  A little tip, stay off of Pinterest before bed while dieting.  It’s also effected my training.  My runs have been soooooo freaken slow.  I’m dizzy and even a tad nauseous on my longer runs.  I’ve lost a few pounds in the first week, but weighed myself this morning and what the actual fuck……all the weight was back!!!!!!  My body hates me right now.  And let me tell you, I hate it right back.  I think it’s trying to adjust to the extra workouts, the lack of food and whatever the fuck else.   I’m going to keep the calories a little higher with my long ride tomorrow and a long run on Sunday.  I’m hoping it helps the workouts a little bit.  I’m sure my family won’t mind if I eat a little bit more to help keep the grumpassness away too.

So now that you’ve been warned, you can decide if you want to try your luck around me for now.  Will I be grumpy or my cheerful self?  Who knows?