Amelia's Kidney Journey

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Category: Amelia’s Blog

Amelia's Blog

10/18/2020

Not a lot happened these last few weeks. I’ve been busy with school and able to focus on different things to mess around with. This week wasn’t a good week. I haven’t been feeling good and my labs show it. I’ve been super tired too. I’m a little better now, even if I was on antibiotics for a week. BUT! I didn’t have to go to the hospital! So that’s a big plus. They increased a few of my medications, so that is also contributing to my…. Unwellness. I did get a new blood pressure monitor that makes it very simple to take it on my own. It’s super helpful, when I remember to do it.

I baked a lot last week. I really enjoy baking, I find it fun, challenging, and…..Boredom relieving. That being said, I made Spooky Cupcakes!! I made them out of red velvet cake and I was super careful with decorations. I used fondant to make a spider, cobweb(?), and a fly trapped in the cobweb. All homemade by yours truly. (And Potato Potato)

I’m super excited for Halloween! Even with the Covid restrictions. Now that I’m old enough this year I get to watch a whole plethora worth of new (For me) scary/spooky movies. We usually make our own costumes too, so even if we aren’t leaving the house we’re gonna be dressed up. I’m not sure what mine is gonna be yet, we’ll get there.

I was able to go to a Church Youth activity….Corn Mazes! My first time in weeks leaving for a youth activity. It was super interesting, I went to my first “Haunted” one. It was super funny listening and watching everyone scream, I didn’t scream (but that doesn’t matter). I was still spooked. I had a great time hanging out with my brother and other kids around my age, masks and all. yay. covid.

This week was also the end of term one for school, woo. I did good for the most part (?????) and I decided that 8th grade is hard. Especially when for my entire 7th grade year I was Hospital-homeschooled and got easy A’s because I already knew the material! I did okay, this term at least. I passed. Next term hopefully will be better. I did amazing in Health though, soooooooooo……….

Kidney Update

SO! in the last month my kidney labs have gotten really………………mean/grumpy/cranky (????) The results have increased to a point where they were starting to talk about Dialysis. I REEEEEAAAAALLLLLLLLLLY don’t like that idea. I don’t like thinking that I’m so close to that part. I really hope I can get my Transplant surgery( Even if I don’t like surgery) before Dialysis. I have Kidney clinic next week, so we’re gonna hear from the doctors if I have time to spare until Dialysis. As far as we know I am actively on the list waiting for a new kidney, with no live donors. Which is Okay! It’s just really intimidating.

Potato Potato Corner

Potato Potato Quote: “Just because you grow underground doesn’t mean your not beautiful. Just like a potato , you can pick yourself up and wash off that dirt to get a new start.”

Potato Potato Pun: “Which side dish does Dr. Frankenstein bring to Thanksgiving dinner?
Monster mash potatoes.”

~Amelia

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October 18, 2020
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Amelia's Blog

A New Cat!

Over the last week, School has been going good. I’ve enjoyed most of my classes and have been keeping up on my school work. We had parent teacher conferences yesterday and I’m getting really good grades. I am doing great at distance learning I make sure I sign into my classes everyday. So far my best subjects are Health (obviously) , English, and Art (We’ve been doing shading!). I was actually able to get school pictures done this year without having to go to the Hospital right after. ‘Cause last year for both original and retakes, I was sick and hospitalized. They aren’t the best pictures. I’m excited to see how they turn out (Hopefully they look good (( Crossing my fingers))(((and knocking on wood, just to be sure))))

It’s also confirmed that I’ll be playing the trumpet this year for band! My sister is helping me, so I have a personal, first hand helper when I’m struggling.

I was also able to make a Pumpkin spice roll!! It turned out really good and I was super proud of it. (Potato Potato helped) It tasted great and I’m happy it worked. It’s not something I’ve ever made before, It was new for me. Ta-da!

We got a new Catt!!!! His name is Dr. Bones and he’s super sweet. He’s only a kitten ( 6 months) and he gets along well with Captain. He really likes playing with pipe cleaners and feathers. We have, so far, named all our animals have Pirate names. So our dogs are Timbers (short for Shiver me Timbers (( I don’t really remember him though, soooo))((( We don’t have him anymore, he was at out first house)))), Compass, and Calypso and our cats are Captain, Thunder (RIP), Tortuga, and now Bones.

This week I haven’t been feeling great. As in I’m, just more tired and worn out. But it’s nice be on distance learning so I could get off of school early ( Or as soon as I finished my homework) We (finally) got a call from Kidney Clinic today saying that I should be actively on the Unos’ donation List. (Yay!) I was technically approved before (Which is good) but they had to wait for all the bloodwork and tests to go through (Which they did today). So this means, if a kidney shows up they can call us, so I can receive it. HOWEVER that being said, my blood type is kinda hard to match with some of the other characteristics of my blood/DNA, so they have to double check me with their special chart. TRANSLATION, This means I might have to wait a while longer for a kidney (Sadly). But when I get one it will be perfect for me. They said it might takes several months before they find one. I just hope that they’ll find one before I need to go on Dialysis.

I don’t like the idea of another transplant/Surgery , but I’m willing to go through with it if it means I’ll feel better. I really don’t like the idea of Dialysis and I really want them to find a kidney soon. In short, Its alot to have (But that’s okay). I can do it.

Gimli, the perpetually worried cat - Imgur
Lotta Emotion

Potato Potato Corner:

( In Image one it shows a Embroidery Kit, I’d like to thank Carol for it. I’ve always wanted to try it! so far so good! ((Thank you for the socks too!!)))

Potato Potato pun=What does a British potato say when life is grand?
It’s Mashing!

Potato Potato Quote=” Don’t feel like a beaten batch of mashed Potatoes. You are always Gonna be a Wonderfully Tall Potato! And I love you”

~Amelia

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September 23, 2020
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Activities

Back To School!

We started school again! On, like, Monday the 24th. Last year I was doing Home-Hospital (Because I was sick for a few months ((Like, 6 to 7))), and I didn’t have a proper school experience (Not that I minded missing basically all of 7th grade).

the struggle is real - Confession Cat | Make a Meme

But Thanks to Covid …(not really) My School has everything set up for online learning! I’m doing Distance learning this year. So I am officially doing a full course of 8th grade classes. I’m looking forward to having more interaction with teachers and learning more things than I was able to last year. I’m currently taking honours English and History and then 8th grade Math, Health, Band, Digital Literacy, and Art.

I’m really excited for my Art, English, and History classes. Art because I’m enticed to be able to have more mediums and more techniques to create art. English because I enjoy reading and writing. We’re gonna be having a reading log, different books, and multiple reports to write. mY cuP of tEa. History because I love learning about older stuff and cultures. We’re talking about early America this year also.

Funny: George Washington memes (46 photos) - - Xaxor | Funny art history, George washington funny, Funny art

I’ve decided not to take orchestra, instead going for Band where I’ll most likely be doing percussion (xylophone) or the trumpet.

All in all, I’m glad to be able to go back to school and have different classes.

On the kidney end…. I am tired, worn out, and still having a hard time finding food that tastes good. My medications makes it so some of my favorite foods now, aren’t so tasty. I still often watch Food Network shows. I just struggle wanting to eat much. I am doing better on my water intake ( I drink 3 liters a day)!

I have been accepted for the transplant list and from our last understanding, we are waiting for insurance approval before I can be in active status. The hurry up and wait game.

Potato Potato corner:

Potato Potato Pun= “What do you get when it rains potatoes? Spuddles.“

Potato Potato Quote= “Why like Hamburgers? Fries are obviously the best. Just remember, you are a beautiful fry!”

~Amelia

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September 2, 2020
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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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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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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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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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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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Amelia's Blog

Transplant Packet

Well, This week I got to read the Kidney Transplant packet “What can I expect?!”, and I think this whole thing is VERY STUPID!!!!!! Now, the packet is only kinda dumb, but not as stupid as me needing another transplant. The packet put a lot into perspective for me, like what the transplant includes. The packet did annoy me a little, like it didn’t include everything that can happen. Most of what I noticed was missing is what caused my kidney issues. It’s very nice that there is a packet for the patients to read and have the transplant make sense.

I don’t remember anything from my first transplant (‘Cause I was less than 3 at the time). So it’s very intimidating to have to learn everything in such a short amount to time, and have it all make sense, AND remember it all. So, I was overwhelmed and got to take the weekend in the mountains.

~Amelia

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July 12, 2020
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