Amelia's Kidney Journey

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Category: The Kidney Journey

Amelia's Blog

I am Official!

Hello Everyone, We had very an eventful week. We found out that I have been approved by the Transplant Team for the region to be placed on the official Transplant list waiting for a kidney. I am a big bundle of emotions because of this announcement; Nervous because it is a HUGE surgery for me, it’s kind of nerve wracking. Relieved because I have been feeling so gross and tired. I know it will really help me feel better, plus it’s a lot better than going on Dialysis. Conflicted because if I get a deceased kidney donor, I’m not really sure how to feel. It was so much easier for me to adjust to a kidney transplant when Carol gave me her kidney. Not knowing where this kidney may come from is interesting to say the least.

This week we had Kidney Clinic. It was very awkward because they wouldn’t let two parents in; my dad being the one left out. Luckily we were able to Skype VideoChat in the room, so that he was able to be included. They had to adjust multiple medications, including a injection, added a new one to help prolong my kidney function, and then they just increased one of my normal pills. My labs this week were okay considering everything that’s going on. But we finally got my blood pressure under control! PLUS I’m not dehydrated!!!!!!!!! The only thing they needed me to do before going officially on the kidney list, was get a EchoCardiogram. Which I did today. Rating score: 0/10 would not recommend. (The People doing it were very nice, it was just the exam (( Glad the room was dark.)))

This weekend when my older siblings went camping, I stayed home and made monster pillows with my little brother! We had lots of fun, playing movies, eating oven s’mores, and sewing! Special thank you to our Church Family for thinking of us and sending loads of sunshine! It’s nice to know that we’re loved and remembered.

Potato Potato Corner This week Potato Potato was able was able to do *cough* help *cough* with two different puzzles! It had lots of fun and got very very confused!

Potato Potato quote “Be a French Fry, Stand tall”

Potato Potato pun “Who is a potato’s favorite author? Edgar Allen Poe-tato“

~Amelia

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August 19, 2020
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Activities

Camping 2.0

Hello Everyone! This week we went on another campout, this time with my little brother! We had lots of fun beating Dad at playing Uno, Hiking, and cooking marshmallows! I really enjoy baking marshmallows over the fire, and we had a BIG fire!

Emergency Toasted Marshmallow Kit - Picture Is Unrelated - Funny ...
  • Highlights of the trip!
  • I went stargazing at night and I was able to see multiple constellations like Cassiopeia and Cepheus
  • Stargazing is my new hobby as of a week or two ago
  • We had a big enough fire to be able to call it a Bonfire
  • I find the fire really peaceful and I enjoy all aspects of controlled fires…..except smoke
  • I was able to see a really pink sunset on a twilight hike
  • On the same hike we saw the city from almost the top of the mountain
  • I was able to forget about my Kidney for a while

Even Potato Potato had a lot of fun! It went on a new hike (In the time period of us walking It also fell…many, MANY times) while searching for its family origins. We also had a round of Uno played with Potato Potato, who found it very difficult to play with it’s mashed potato brain.

I’m glad to be able to live in an area to easily go to different campsites, and be able to enjoy nature’s wonders. I very much enjoy being able to stay in the mountains for a while. I’m excited to go again, no matter how far it might be from that time. Plus a fire and the extra access to viewing stars is a big bonus.

~Amelia

P.S. I got a nice anonymous gift basket full of yellow sunshine! Thank you for thinking of me. I really appreciate it. It made me very happy with the cheery aura it gave. Thank you whomever took the time to put it together. I loved everything it included, and I’ll even share.

I would also like to thank all of those others who keep remembering me and dropping off fun presents! Thank you so much!

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August 5, 2020
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Activities

The one about Amelia’s Second Campout

Yes you read that right, I have taken Amelia on 2 campouts now, and she is a trooper. She loves to be out camping. She goes and goes, and gets tired easy, but she will rest and head right back out!

She had a great time running around and taking pictures of her potato with Tristan. She also had a great time beating me handily at Uno. Yea, I ended up drawing 24 cards in one round….

She was also very good at helping to get things ready for dinner, saw wood, and then clean up. I think she likes to just be outside where there is not much thinking about her health. It is good for her to breathe some of that mountain air and watch the fire dance. And apparently there is some mystical medication encased in marshmallows…she is diligently searching for that, just like Charlie searching for that golden ticket.

If only there were marshmallows that would grow a new kidney. It is fun to watch her teach Tristan how to camp and do some of the camp chores.

Still coming to you live, 44 days into the new kidney journey

-Justin

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August 5, 2020
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Amelia's Blog

The Weeks are getting Looooong

This week has dragged on and on, AND ON. I’ve been tired all weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeece

eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeek

This is my cat, Captain!

I was glad to have a easier week and less people to see. I only had one appointment with the Transplant Pharmacist for my medications. This is the last thing/ person I needed to check with so I could get listed for my transplant. They meet the first of August to see who they will accept for the transplant program. I should be able to be accepted into the program, as far as we know. That being said, enough stress.

Fun note: I got a CakePop maker this week as a gift, and I was able to make red velvet cake pops covered in chocolate. Everyone enjoyed them! Lots of fun!

I’m glad not to have any appointments anytime soon! I’m also excited to go camping again this weekend, to get away! I can’t wait to be able to play with the fire and hang out.

~Amelia

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July 26, 2020
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feelings

The one about the last pre-transplant class

Today we met with the pharmacist for our last Pre-Transplant class. She gave Amelia a bunch of information, and was really nice to talk directly to Amelia for the appointment. Since Amelia is the one taking all of these, she needs to know!

I really like when the doctors talk to Amelia, not at Brenda and I and hope Amelia gets it. Now, when she was younger, and for the first transplant, Amelia didn’t understand any of this. Now that she is 14, it is great to get her prepared for the future when she will be living with this transplant on her own.

Amelia wants the cat to help….

I wonder how she is processing all of this, learning what Brenda and I have been doing with her for years, and wondering how she is going to handle all of it. Of course we will be there to help, but it is a bit daunting. I took over setting up all of Amelia’s meds years ago when we almost gave her 2 doses and Brenda and I determined that 1 person in charge was a good idea. Amelia helps me now, to load her pill box and keep track of what she is taking every dose.

Hopefully after this appointment, she will continue to be aware of all of the things she has to do. I also hope that there is not a hiccup that will keep her off of the transplant list for another month.

At the end of this appointment, the pharmacist asked Amelia for a bright thought to get her through the rest of the day. That is just fun and it is great that they are involving Amelia so much in this transplant process.

More to come as we know…

Coming to you live 35 days into the new Kidney Journey…

-Justin

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July 22, 2020
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Amelia's Blog

Day 2: Pre-Transplant Classes

Today I had to wake up at 6:45 to get to Primary’s (For day two of Transplant evaluation) by 8:00!!!! Not my usual time to be awake. It seemed that they just kept droning on and on, I still learned a lot! So, as soon as we got home I took one of my usual naps, except this one lasted four hours.

  • Today I learned:
  • My current Kidney might be removed.
  • I may need a “CAT” scan. (editors note: this is a real CT scan and has nothing to do with a feline)
  • I’m glad that I have a good friend in Nevada who I can vent with.
  • I’ll be staying on the same Medications for my kidney.
  • I’ll be having ALOTTTTTTT of doctors appointments for the first three months after the Transplant.
  • I have to get the high school booster shots before I can get a kidney.
  • They’re Vampires
  • EVERYONE asked about if I had a live donor yet.
  • But, like, How do you ask someone that?

~Amelia

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July 17, 2020
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feelings

The one about the workups, Day 2

Well we are sitting here in the clinic at Primary Childrens hospital today. This is the day when we get to see the transplant people….that we know. as of 1030, we have seen the coordinator and signed a bunch of papers to get ready for transplant, the child life specialist who just chats and tries to figure out how to get the kids more comfortable in the hospital.

Then we saw the doctor. We have been seeing Dr. Sherbotie since Amelia first got sick 13 years ago. He is still puzzling about Amelia. There is a lot of unknowns about this new transplant and what will happen with it, and they kind of have to wait and see. He is talking about situations where they may have to remove her current transplant, or go on dialysis for a while, and then what immunosuppression that she will be on. He was also talking about consulting with Dr. Afify, the oncologist, to make sure that the immune suppression Amelia will be on works for her new transplant and will help avoid getting PTLD again. He is very optimistic about this second transplant.

Everyone keeps talking about finding Amelia a live donor for this kidney. That is hard for me to ask anyone to donate when they won’t work me up for it. Amelia can have both of my kidneys today if they would do it, but they will not. For now.

So now we have to ask if anyone would be willing to get worked up for a kidney donation. It is interesting what they do now, people can come in and get worked up for Amelia, but if they don’t match then they can still donate to someone else and things get matched up for Amelia. This is similar to what Carol did back for the first transplant, where she donated to Amelia. Carol’s uncle, that she didn’t match, got another persons donation soon afterwards. Now they can do chains of people where there may be 4 or 5 in a line between people. So now I have to post here, if anyone wants to get worked up to be a donor, go to the University of Utah’s page: https://healthcare.utah.edu/transplant/living-donor/

Now we are waiting for the rest of the team to come in. We are waiting for the dietitian, pharmacist and social worker. More to come about those.

Dietician: not much is going to change! She was glad that we have been doing good with eating and drinking for the past 11 years. Amelia will do just fine after transplant.

Next up was the social worker. She needed to know how we were going to handle another transplant and what Amelia could use for support. According to Amelia, it comes down to parents, siblings, and the cat. In reverse order.

Anyway, that was our day at clinic. We are hoping to get her on the transplant list soon, hopefully before she has to do dialysis again.

Still coming to you live, 30 days into the new Kidney Journey

-Justin

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July 17, 2020
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Amelia's Blog

Pre-Transplant Online Video Class

Today was the first day of Pre-Transplant evaluation for the Kidney Transplant process. They went over all the pre-transplant information, during transplant, and aftermath changes. It was a ton of stuff to learn, I’ll need a Remembrall to recall any of it.

So, me stating I’m not exited is a understatement. I’m not looking forward to the whole surgery idea AGAIN. It’s not gonna change all that much of my lifestyle because I’ve been doing the same things (to protect my kidney) since I was 3. Except I found out that my new kidney was going to be on my opposite side from the old one. Almost everything I learned today was stuff I was already familiar with, so that made me feel better. I can’t imagine being completely new at this, and having to learn everything in the span of a few days. It’s probably very difficult to people who are new to the transplant process.

12! TWELVE!!!!! Twelve tubes of blood they (home health) took (Those Vampires) to cover all the tests that they need to do for the transplant evaluation.

A few interesting things I learned today:

  • I’m Not allowed to have pomegranate juice and or Grapefruit juice
  • No energy drinks for me
  • Peritoneal Dialysis is STUPID and not for Me
  • Green tea is not allowed but Herbal Tea is Alright
  • I won’t have to be on all my Medications after the Transplant
  • Anybody can donate if they want to
  • If I get COVID-19 I will not be able to have a transplant for a long time and might need dialysis before i get a transplant (ONLY IF IT HAPPENS)
  • I might not need Dialysis at this point in time!!!
  • They think I will get a transplant, before a year
  • They use BIG words
  • After the transplant I won’t be able to go back to school for a few months because of COVID-19 and being extra sensitive to everything. I’m excited for homeschool and not talking to people in person!
  • I don’t have a super restricted diet after and can still eat my favorite food
  • I can still go camping with Family
  • My cat can join us for online classes and that makes me feel better!

Potato Potato update!!!!!! It took a bath this week, saw It’s family AND It Loves Us with all its Kidney!!

~Amelia

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July 16, 2020
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Parent's Blog

The one about the workups, Day 1

Well the time is here. This is our first set of appointments towards getting Amelia on the transplant list again. Today we will meet the team (again. Not like we haven’t known them for 13 years now) and they will educate us on the transplant process. This is a requirement for her to be considered for the transplant list. I will be adding to this post as we have the appointments. Luckily, they are all teledoc appointments over the internet and we can stay home for them. More to come on these as we go!

12:00 pm Ok, we have finished the first hour and a half of our clinic appointment. There was a lost of information about transplant and the basics. I can remember doing this the first time, but Amelia doesn’t remember this so it is new and overwhelming for her. This has been a good refresher for me, some things I didn’t remember. I just have to say, Wow. I can’t believe that this is here again. Now we are on with the dietitian. More updates to come!

1:00 PM a lot of information from the dietitian, most of which we have been doing pretty well with over the years. a couple of new recommendations, and some things that we needed a refresher on. Going onto the doctor now!

2:45 PM ok just got finished with a TON of information from the doctor. That was a huge bit and Amelia is very intimidated by it. Some interesting things with COVID, they don’t have much data for the effects on transplant, but we have to be very careful with Amelia. If she has a positive test or contact with people that can be suspected of having COVID, she may not be able to have a transplant. They will not accept a donor that has had COVID. In light of this, our family quarantine just got a bit tighter, down to changing clothes after shopping or going to work. We just can’t take chances with this stuff and having that affect Amelia. Looks like we will be seeing most people over the internet! Our next appointment is at 4 with the transplant surgeon. More with that then!

4:15 PM Well that was a quick visit with the suregeons. We talked with the Physician’s Assistant because the main surgeon was in surgery! We will meet him later for sure. Amelia got a bit of information about what to expect for the surgery.

All of this is a bit much for Amelia to process and it is going to take her a bit to get all of it figured out. She is writing a post right now about it, that should be fun.

Tomorrow we will be up at Primary Childrens most of the day for more evaluation. Hopefully, there will not be anything that will bar her from the transplant list, we don’t expect there to be.

Coming to you live 29 days into this new kidney journey,

-Justin

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July 15, 2020
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Amelia's Blog

Camping!!!

‘Potato Potato’ and Me!

Thanks to Covid-19, Girls Camp was canceled! So! My dad took my sister and I camping. We went up to Diamond Fork campgrounds and stayed for, half day on Friday the 10th, all day Saturday the 11th, and half day on Sunday the 12th. It was verrrrrrrrrrrrrrrrrrrrrrrrry hot, except it was the same temperature as the city, but we since were outside and noticed it more.

We got to go on a big hike trailing up the side of a river. We (My sister and I) went up and down the river to take pictures and collect rocks (I did most of the rock collecting) We also went on a drive up to a small waterfall! We got a lot of pictures for memories. The whole area was very beautiful and picturesque.

We had a Big fire! (That I helped make). I cut up multiple logs into firewood, and I lit the fire one night for dinner. Around the fire I ended up eating so many marshmallows (some of which were s’mores). I gave some fire cooked marshmallows to my sister. Because I was trying to get the perfect Golden Brown on at least one of them, for Me!

Alright, so, Girls Camp was online this year, and one of the suggestions to do for a new activity was, and I quote, ” #12 Are you turning into a couch potato? If so carve a couch out of a potato!” Naturally I had to do it. So I grabbed a potato, then I decided the potato was too awesome to carve. So I drew a face on it………and named it “Potato Potato”

“Potato Potato” went with us Camping! and had lots of fun, It did multiple activities with us. Like: Camping, Swinging in a hammock, Swimming in a river, Tree climbing , Hanging out in a teepee , Sat in a deer ‘bed’ , Hung out by a fire pit, Cloud watching, Stopped and smelled the flowers, Hiking, And Sleeping in a tent.

Needless to say, “Potato Potato” will never become a couch!

All in all, we had lots of fun in our own version of Girls Camp. Within the next few weeks I’ll be going on another camping trip, and I’m super excited.

~Amelia

  • “Potato Potato” updates to come

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July 14, 2020
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