Amelia's Kidney Journey

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Category: Potato Potato

Amelia's Blog

Early February

These last few weeks were sort of uneventful. We had Kidney Clinic (WHICH WENT ON FOREVER AND HALF A YEAR! Even though, we only saw three people and were in the waiting room for forty-five minutes. To start. Then we spent, who knows how long, in the actual clinic.) They said that I was doing pretty good right now (even though I’m not feeling great) and wont need Dialysis for now, until we see them in a month (not guarantied we might have a while) . I just need to make sure I get all of my food and medication in.

(Edit: The clinic called us some time this week, saying that ” i’M nOt AllOWed tO haVE aNy mOrE VirTUAL appOINTments, beCAUSE oF THe diffERENce oF tHE hoME anD thE clINIC SCales” So for now on in-person appointments. Just like before. Also, my Dietitian says that I don’t have any current restrictions ((but I don’t need as much protein! Its not needed in my diet, though I can still have meats.)), But I NEED to make sure to get enough calories, so I don’t lose weight and need Dialysis sooner.((I am basically allowed to eat anything and everything that I can. (((junk food included))))))

I’ve been doing good in school (I’ve been clear and able to get all my work done on time, and efficiently. For a few days there I had ((almost)) NOTHING to work on) I had Parent Teacher Conferences on Thursday, I did quite good, even with internet problems. (they were all zoom meetings) I’m quite proud of myself.

Almost everyone (plus my grandma) watched the Super Bowl last Sunday. I ended up leaving the room and helping my sister once I figured that the Buccaneers would win. I DID eat quite a bit though (Me along with everyone else during the game).

We had Valentines day. It was different than I remember (that being it just felt different and not another holiday. ) We had a nice dinner (i.e. Surf and Turf) and our regular valentine letter exchange. It was also nice over the weekend to see family.

Some time last week we needed to move rooms (like we do every so often) because of spring cleaning. (it was funny, my little brother ((who I was exchanging rooms with)) REALLY didn’t want to move rooms. It took a bit of convincing ((he likes it A LOT now, he just took a tiny bit of time))) I am now down stairs with my sister and all the cats. Its been quite a bit of work, because my room is currently in transition. But, its perfectly fine! It’s worth it.

I have finished four, over two hundred pages, books. In less than a week…….. I’m also in the middle of another one….

Potato Potato Corner!

We found Potato Potato, they were hiding in a cave. So we celebrated, they got to see some cats and watched a movie.

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February 16, 2021
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Amelia's Blog

JaNNnNNuaRY

I REALLY haven’t been feeling well lately. Mainly just my kidney function is going down (we think…. ((It’s not low enough to need Dialysis yet. Thankfully. But it’s coming closer))) My labs have been slowly getting worse. I’ve also been nauseated (more so than usual) and have been needed to take/do things to help with it. But it was better today, to the point I was able to eat a full meal.

School has been stressful ( But what else is new? ¯\_(ツ)_/¯ ). Last week, my sister and I made 44 ‘Star Wars’ cupcakes; half of them chocolate with green mint frosting and red ‘Light-sabers’, half of them vanilla with red strawberry frosting paired with green ‘light-sabers’ .

We’ve been able to go on a drive or two, and have seen a few new views. It’s nice to get out of the house sometimes.

Then, some cat pictures …

Potato Potato update

They are still missing, so for now my cat, Dr. Bones is standing in.

~ Amelia

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January 28, 2021
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Amelia's Blog

It’s beginning to look a lot like Christmas?

We had Thanksgiving! It was super fun with my Grandma joining us for most of the day. I did end up eating more than usual (like most people do on Thanksgiving). For the meal itself I made ( ‘Cause me and my siblings make different dishes every year, so we have the experiences for the future) Candied Yams/Sweet Potatoes, The Rolls, and a Crust-less Pumpkin Pie. After dinner we started the Christmas season with a few games like Bingo for funny presents, A dice game for Puns (that my mom made as gifts), and a fun “Stuff the turkey vase with puffballs” game that my sister made. My Grandma also brought a fun Christmas carol game. We ended up going to bed super late (close to 1 AM). It was worth it.

For Christmas, one of our traditions is to create homemade presents for each family member. This year I’m ahead! I have everything figured out and started. I think they’ll really enjoy everything I’m making this year. I have gotten into some fun and different crafts such as Knitting and cross stitching! My grandma is helping me to learn how to knit and a few techniques. So far I have a good chunk of a scarf done, around making all the Christmas presents.

Every year we make homemade ornaments. This year we made them out of polymer clay, like we have for the past few years. This year I made a flower bouquet thing-y. I just kinda made a few flowers I liked, and put them on an ornament.

Another tradition we have is to make sure we get Christmas pictures. We usually hang up one or two photos and send cards out to family and friends. This year we have a few cute pictures that we took with the company FotoFly down in Kaysville.

On the school end, It’s almost the end of both second quarter and first term for school. I think I’ve been doing pretty dandy, so far at least. Distance learning is really great for both Covid being around (and spreading((Stay safe))) and for kids who can’t attend because of medical reasons. It’s nice when I’m not feeling as well, and need to hold off on working for a little bit, I can just do school work later. Like when we went and got our pictures taken, I did a little bit of work in the morning and the rest after our appointment. It’s really nice.

Kidney Update

We had Kidney clinic a few days ago. (A usual appointment length ((So like two hours)))

Tony Stark Eye Roll Meme Generator Template

So far I’m doing really pretty good! According to my dietitian, I’ve been eating enough lately! Which is great for everything that’s going on. ( I do need to continue to eat enough so nothing will happen). The doctor of the day didn’t say ANYTHING about Dialysis; SO I won’t be needing Dialysis anytime within the next month-ish. My kidney function is down by some, but luckily I’ve been feeling about the same. Hopefully how I’m feeling will stay the same for the time being.

Then, lately I haven’t been very good with taking my Tums, so they decided to switch them with a pill that does the same thing. And so far the pills has been better (for the most part) and I’ve been able to take them with each meal like I’m supposed to. I currently don’t have a certain diet, but I need to start changing to a kidney diet. Which means I can’t have as much of somethings. So I’ll be used to the changes before the actual diet changes. SO! I can’t have as much Chocolate. I’m SUPER sad about that. So instead of asking for my usual chocolate bar (When we write to Santa’ every year we get to ask for one specific treat)….I asked for Starbursts (which are still good, I still like them) But Chocolate.

CHOCOLATE! | spongebob chocolate guy | Spongebob, Spongebob chocolate, Spongebob memes

Potato Potato Update.

MESSAGE FROM STARCH LAND: Our dear friend Potato Potato has recently gone missing. We don’t know what happened, but we have the French Fry Police on the case. Potato Potato will be found shortly. Thank you for your patience.

Oh and cat pictures.

~Amelia

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December 9, 2020
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Amelia's Blog

11/8/2020

These few weeks have been eventful. We went trick or treating to the best of our abilities with Covid. We were only able to make it to a few places but generally did good. I was feeling better on Halloween so I dressed up as Indiana Jones. I had a whip and everything. Plus we got to watch many Halloween movies. Like we re-watched ‘Hocus Pocus’ again, a movie that I’ve always enjoyed.

For our trick or treaters we created a mummy candy slide. We got it all decorated and had signs up to direct the kids to make Halloween noises to get candy. It was super fun!

One day we were able to go to the Corn maze as a family. I walked around with my sister, We were able to make it to the end and top of the maze. Basically seeing all the dead end and paths. It got cold but it was super fun.

I got to go to my Aunt’s house again to make more food and different crafts. We had lots of fun, we always do. I really enjoy joining her for the day just to hang out, because she never focuses on my Kidney Stuff. This last visit we made really good caramel apples which I didn’t get a picture of before we ate them all. But the time before we watercolor painted, which was super fun! She’s always been super talented. I learned/learn a lot of new things every time.

This is my watercolor artwork

Last Friday we went on a super long drive to Nebo loop. We wanted to get out of the house and see the Fall leaves before winter. We drove for like 5 hours straight. I was able to get through the jumbled mess of my Broadway music playlist. (I have six different musicals in said playlist. Plus one random song from another musical.) We stopped in the middle for a picnic including hot dogs and s’mores. We had lots of fun hanging out as a family and sharing jokes.

Kidney Update.

These last few weeks I haven’t been feeling as well, still able to do things just not as much. Everything has still been about the same, just not as good of a week. We had kidney clinic last week where they talked about Dialysis, even when I don’t need it at this point in time. They seemed like they didn’t really mind that I don’t understand some of the things they are talking about. It was kinda confusing. We asked for papers to help me understand a few things, so we are waiting for those. I’m hoping that I get a kidney before I need Dialysis. The types of Dialysis sound intimidating. They make it sound like Dialysis is getting closer (When its not) and it’s not a idea I like. In reality, my labs were a little better than they have been. I’ve been able to drink all of my water and (mostly) eat.

Potato Potato Corner

Potato Potato quote: ” Don’t store all your sadness in starch , It’s okay to be sad and no-one can stop you. Its okay to show your feelings“

Potato Potato Pun: “ What do you call a red potato that tries to pass as a tomato? An imi-tater!“

In the last picture is a knitting set, that I received as a gift. We aren’t sure who it is from, but Thank You! We are going to be getting different patterns and stitches to learn. I really excited to do this, another thing to add to my ever growing list of crafts I can do. Thank You again.

I miss you Grandma… I love you.

~Amelia

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November 8, 2020
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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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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

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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