Amelia's Kidney Journey

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Author: Amelia

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Has it really been 4-ish months?

Hello! It’s been a loooonngg time since we last updated! Lots of things have happened and for the most part all good!

I am back in school, but this time High school! I am still distance learning, but they have a much better system this year. It is the end of quarter one and I am doing pretty good! All A’s as far as I’m aware. I get everything in and my teachers have been really nice! I do have one class I go in-person for but it’s a small class and not in the actual school itself. I have been quite stressed about school because I really want to do good and so far I’m told I am. It has been tricky catching up from all the school I’ve missed over the past 2 years. But I’m getting there. I have a much better score in math than I’ve had in a long time. It has taken me a few weeks to figure out a good schedule for waking up at 7:00, But I’ve basically got it! It also is hard yet helpful in a way when Bones joins me during school, usually just sleeping!

Health wise I’ve been doing so good! I am now on once a month appointments and blood draws! This is after every two weeks. I’m just glad I don’t have to get checked out of my classes for them. I am also glad that we don’t have to go in all the time! My BK virus is completely not showing, or as low as it will usually be! But this is after about three different tests. Which isn’t super bad because last time it was many, many more and each time it got lower so it was all good! They also ended up adjusting a couple of my meds for that but all of my other labs have been really good, showing that I have been getting all of my water and my milk. (Even though milk has been tricky for me!) It is also saying that my kidney is working super well and it isn’t causing problems, so I’m on a lower of my anti-rejection med because it is working! I have been doing very well and have only gotten sick once this season, which was sort of surprising to me. I could have gotten sick so many other times but I haven’t, which is very good!

I have been able to do more lately even if that isn’t a super ton. I’ve never been able to do everything so I’m not upset by this. We have gone to the Utah Hogle Zoo a few different times and I’ve been able to walk some if it, spending the rest of it in a wheelchair so I can still enjoy the animals. We have gone on numerous day drives and camp outs. Just little things when we can add them in there. I have been able to go on more walks with the Dogs for my exercise. I’ve also been able to do more with my sister, we have gone on multiple outing every once in a while. Sometimes to just get out of the house.

I have been crafting a lot more because they lowered my med that makes me shake. So I’ve been doing lots of cross stitching. Which I very much enjoy even though it might take me forever to finish, because it’s a pre-drawn out cross stitching lap blanket. I think I’ve been working on it since August and I’m only done with a tiny bit. But I don’t mind as much as I usually would.

Hey everyone! now that I have been doing so much better and not much has been happening since school has started, this blog is going to hit a major lull. Because I am feeling better It’s just not going to be updated a lot. We will try to update every few months or so just for an update with reassurances about how we are doing as a whole family. This way you know. Thank you everyone for following and caring. It means a lot more that I can express.

~Amelia

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November 3, 2021
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It’s been way too Hot, and I’ve been less productive.

All things considered, Not a lot has happened. It’s been getting hotter, so I’ve been inside all the time but I also can’t get burned all. Because of Meds it can be bad if it gets further than just a sunburn. We were able to go out and see fireworks for the 4th! We have been outside significantly more than before, I’ve been doing lots of walks and even went scooter-ing once! (it was a lot. Maybe not again for a little bit).

My kidney has been doing very good! We finally got my blood pressure settled and figured out, I’m off of more medications, and I’m on once a week blood draws. I do need to make sure I get all my water in with all the heat, it’s been a little tricky but I’ve been pretty good. We made yet another chart for me to fill out to help get all of it in. I have had a few more headaches lately but it shouldn’t be anything other than not having enough water. I also need to get lots (it’s the normal amount for someone in the same situation.) of Calcium. So Milk and cheese all the time!

They have found the BK virus more prominently in my blood the past few weeks. So they lowered my anti-rejection dose so I could hopefully fight it by my self. If that doesn’t work they’ll do something else. I’m not really sure what. But the BK virus is the same thing I had in 2017 when I got Chemotherapy for a few months to wash it out of my system. (Oh! that’s what they’ll do last if it continues to progress. Chemotherapy is a last resort.) My labs did come back and the BK hasn’t gotten worse. It’s staying where it was last. So hopefully it won’t increase at all and it goes down. I am off yet another medication. But only one. That’s okay though! I’m only on like 8 pills in the morning and 6 pills at night!

I have been reading a lot lately. Just like always. Finished like 3-5 books. I’ve also watched more of shows by myself this month than I have for MONTHS. I’ve also made so many different treats the past few week I’m surprised that they aren’t sick of sweets. I have made like 6 different types of cookies, two different Cakes, and muffins. It nice to be able to bake again to help with the stress.

~Amelia ❤️

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July 21, 2021
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The Kidney Journey

It has only been 1 month and 24ish days since the transplant and I’ve been over the appointments and blood draws since March.

It’s been pretty hectic the last few weeks between moving and kidney stuff. But we are comfortably in this new place, temporally, house sharing with a few people. The way we have everything set up right now, has the girls and the boys in separate rooms in the basement and the parents upstairs. We are all doing really good (even with our sleep schedules being messed up). It’s too hot to be outside, ‘Cept I keep going outside… Because the backyard here has lots of shade and frankly it’s nice to read outside. When it’s not 100 degrees. Or when there isn’t children back there…

I still have two blood draws a week which is very frustrating because it usually seems unnecessary. But the Kidney Clinic’s are now in the afternoon and not too-early (probably normal people) hours. We haven’t had many changes in clinic besides many medication changes (I’m off of two more meds!). I have been having some problems with my blood pressure because my new kidney is still over working and I was still on quite a bit of Blood pressure meds, because my blood pressure was dropping lower, and I was getting super dizzy and lightheaded whenever I stood up. I am still slightly dizzy whenever I stand. But it’s getting better! I’m still not feeling great overall but it’s loads better than it was. We even went on (at least) a mile walk yesterday.

School is now over for the summer (the boys are SUPER excited) I finished a week early as a distance learner because I couldn’t go to the last week fun activities, but I don’t mind at all. The day that everyone else got up Leatha and I went to the store and got…books. Six books each. It was nice. I even got Classic books instead of others because…I like classics and history. I do plan on taking a few, fun, not required summer classes so my summer isn’t boring and completely pointless.

Cat Update(?) All the cats have been stressed in the move but they’ve been doing pretty well. Bones is up and everywhere, not really bothered with the move. Tortuga, surprisingly, has been really good and exploring and social (to at least Leatha and I). Captain though has been very grumpy and hiding but has been coming out more the last day or so. He’s still cuddly at night so its a win. That’s it really, they’ve been good but still getting used to everything, to be fair so am I.

~Amelia

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June 7, 2021
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Amelia's Blog

It’s Mayyyyy and it’s been a loooonnnnng month.

It’s May and we have so much going on! The 12th was my 1st kidney’s 12th birthday. It’s weird to think about…. Especially since the 13th was the official 1 month of my new kidney…

I’ve been doing pretty great all things considered. My incision is looking great and I’ve been able to do a quite a bit more. I’m not taking the super strong pain meds and I haven’t had Tylenol around the clock (I’m still taking some, but it hasn’t been down to the minute or consistently.) I still get really tired and I’ve been having a few naps. I’ve went on a good handful of drives and just getting out of the house (mostly up to Kidney clinic two times a week ((NOT ANYMORE THOUGH!! its NOW only once a week for a bit longer. I’ll be on every two weeks after the next appointment))) I have (and will continue to have) my blood drawn 2 times a week on Mondays and Thursday. Which is Fine. Just annoying. Overall I think I’m just feeling pretty tired and Eh… Nothing bad but my body isn’t used to this kind of cruddy. Which is good! I shouldn’t get used to things like that! And once again, because of all my medications I’m still on Visitor restrictions. But those will be waning within the next few weeks. Thank you everyone for being so good with these restrictions!

I have started online school back up part time. I’ve been easily getting my assignments and such turned in. I’m glad that I’ve been doing distance learning this whole school year, it makes everything a lot easier. I enjoy doing school like this. I’m actually gonna be going back full time for the last 2-ish weeks to make sure I stay having decent grades.

We did get pictures done last week (a few are up in the photos if you’d like to look!) which was verrry tiring because we had, like, 45 minutes to get as many shots in the outfits we wanted, and I had 4 outfits. And they turned out nice! Afterwards we did go up a canyon and had just a relaxing hangout with a fire.

I’ve been able to do quite a bit more lately! Like pick up the cats, pack a few boxes, and SO many stairs. (Last weekend I packed a total of eleven boxes out of my room. Now there isn’t that much I have left out. I’m proud of it ((I didn’t lift anything; Leatha did all of that)) I’m still not doing everything and my siblings have been really good helping out where they need to. We’ve done a handful of puzzles (no where near as many as before) the current one being a 1500 piece Disney villain puzzle. I’ve also been reading lots. I haven’t really slowed down. (I’m gonna start reading classics (i.e. The Odyssey, The Adventures of Sherlock Holmes, and Jane Eyre.) because I have easy access to them as an e-book. Which is super helpful with all the chaos going on. It gets a little hard to read on paper. As much as I’d prefer that)

I really appreciate all the support and prayers we have been getting for every-crazy-thing that has been going on in our lives. It’s been really helpful and suuuper nice. So thank you everyone. It’s very nice to know that we have so much love and support even when it doesn’t feel like it.

~Amelia

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May 16, 2021
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Activities

I Got a new Kidney and I’m back Home,

Well, I have a new kidney and I’m recovering pretty well! I received my new Kidney on Tuesday April 13th. I am glad that I was doing well enough that I only had to stay in the ICU for 2 days. ✨❤️ ✨For the rest of the stay I was in the Immunocompromised unit. I’m super glad to be home and not at the hospital where they want my blood twice a day (side-note; while in the hospital I got my blood drawn or a needle poked into me 20+ times🩸. Not the funnest activity.) I haven’t felt super great since the surgery. But of course I wouldn’t! it was a major surgery. But its definitely better than the last few months during rejection. I feel different than that cruddyness too. But I am getting better day by day and I’m sort of excited for when I’ll be able to do more.

Getting home, I was super glad to be back with my Cats🐱. They got lots of cuddles and helped me to feel better, see the great photos below! Bones has been following me at all hours like a “puppy dog” to make sure I never leave him!

I’ve been able to get some stuff for our moving plans done (such as light packing and looking photos of houses. Its hard to pack because of the lifting restrictions but Leatha has been super helpful by doing all the lifting while I just fill boxes.) But overall I’ve been hanging out more. I’ve had a ton of naps with my cats. All three of them missed me a lot so we’ve had some great cuddles.

📚 Since I got back I’ve read so many books, its a little crazy. But I don’t mind. Also in my free time I’ve done like 🧩Ten puzzles🧩in the last two weeks alone. So that’s fun.

I’d like to thank everyone who’s called or sent a letter (e-mail or otherwise) stating how happy they are I’ve got a new kidney. It means a lot to have all the support and love. So thank you for remembering me and I hope your having a Nice Spring time as well. For now I am unable to see anyone but my family. I’ll be able to see a few people in a few months time, when I’m not as Immunocompromised. For now my medications and the people at the kidney clinic will decide when those restrictions are lifted and I can see more people. But for now we’ll have to wait!

Thank you again to anyone who as stayed with us through the whole journey.

Lots of Love,

Amelia.

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April 27, 2021
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The Kidney Journey

Aprils Update…………..

We had yet another kidney clinic appointment Tuesday. It has only been two weeks. (But the next appointment wont be for a whole month because I haven’t had any extra changes.(( ALSO!! This appointment was significantly shorter than they have been the last few months!))) I’m doing about the same as I have been… physically…. My labs are a little higher but that is to be expected at this time. My Meds are also a the point where they changed my labs a bit. Because my labs are affected by my current medication doses, they have reduced my iron and another med that helps my kidney out. So its really good! They also requested for me to have another shot that helps my kidney. Its the same one as they have done before its just a repeat. But it is going to help.

I do not need Dialysis as of this appointment, but I am getting closer. Sadly.

I’ve been extra tired and nauseated the last few days, but the pharmacist says its because of my one medication (that they’ve reduced) I was able to get some activity in when we went to the park on Easter. I was also able to go to a Young Women’s activity for the first time in a little while, it was fun but I got quite tired afterwards. But it has been interesting to see when when I still feel mostly the same but still…crappy.

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April 12, 2021
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Amelia's Blog

Marchh is longg…

So far this month has been oh so very long. I haven’t been feeling as well. I have been taking more downtime and falling asleep later than I have before. I’ve been incredibly nauseated for one reason or another, and I’ve been getting headaches nearly on a daily basis. It’s getting to a point that I don’t want to do anything much lately besides reading and just sitting around. But its perfectly fine, the cats are happy.

We’ve had 2 different Kidney Clinic Appointments in March.(Because of increased crumminess I now need to go to a Kidney clinic appointment every two-ish weeks, which is as fun as it sounds) Each of them turned out alright, nothing bad but still not great. I had an Echo scan this week. That’s where they did an ultrasound on my heart to make sure it’s still working with all my high blood pressures. (I’m also going to be doing a 24 hour blood pressure monitor because of that.) The only thing they saw was my left heart vessel is leaking a tiny bit with how high my blood pressure was, but it should fix it’s self soon with the extra medication.

The appointment I had on Tuesday was okay. During, said appointment, we were informed that my kidney function is cut down by half from six months ago. But I don’t need Dialysis yet! It is steadily going down and not just dropping; which is really good! They are going to be doing an ultrasound of my neck veins to make sure they’ll work for my chosen Dialysis catheter; because during my first Dialysis when I was young, they used the same veins many, many times. I’m still not doing great eating (because of the nausea) So they want me to try and eat more. My Nutritionist also said to cut down on my sodium based off of one comment. Even though I’m not eating that much to begin with. -_- . But I’m still trying to do as much as I can. Its still not super good.

I’ve been doing really good in school, it been super easy. I’m all the way caught up and slightly ahead. Next week is Spring Break and also the end of 3rd quarter, so its super good. I’m acing most of my classes! I’ve been in a mood lately where I feel like I need to do homework but I have nothing to do! It’s silly but apparently I take after my sister, in yet another thing…

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March 25, 2021
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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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Activities

New Year’s Beginning

The new year has started, we’ve been making new goals, and having new hopes for what is to happen. So far 2021 (For us at least) has been pretty good! We’ve been doing good and haven’t had any disasters. So far we’ve been able to make our New Years Goals and have written them out. Some of my goals I’m super excited for because they’re crafting goals. Like I wanna make 3-4 cross-stitching patterns, finish 2-3 Knitting projects. and try 4 new baking recipes of things I’ve never made before all before 2021!

Health wise, I haven’t been feeling great. Just a bunch of overall crumminess and not feeling well. I’m having problems eating again, mostly because of my medicine making me not be able to taste a lot. We had a doctor’s appointment Tuesday, and they said that I’m doing pretty good! My labs have been doing really well (considering everything that’s going on) I’m eating and drink all I need to!

We haven’t gotten any new news about the kidney list, but we’re still hoping and waiting for something, sometime soon.

We had Christmas, and it was super fun, I was able to do a lot more that week thanks to a medication time change. We got to see a lot of family members and talk to other family members. Christmas itself was harder, probably due to lack of sleep. I was able to finally sleep for the first Christmas Day I can remember. But overall it was super fun and I’m glad we had as much…everything as we did.

I also got a few things for Christmas that helped spark a few of my goals, like a New personalized Apron with Minnie Mouse on it that my Grandma made, kntting yarn, and cross stitching fabric and some cross stitching patterns!

New years went similarly. We had a Seafood dinner and had lots of fun waiting for midnight, we also watched the Towering Inferno, Because of our tradition to watch disaster movies on New Years eve.

2nd quarter for school ended this week, and I did considerably better than last quarter. I got everything in and my grades are alright! I’m actually really proud of how I did. So hopefully I’ll do better next quarter. One of my new classes is gonna be CTE which is all the Sewing and Cooking, so I’m excited to see how that gonna pan out with Distance Learning.

  • Baby Yoda!
  • Dr. Bones!
  • Random pineapple
  • Dr. Bones
  • My Cookies!
  • Tortuga
  • Captain in the egg box

Potato Potato Corner

Our dear Potato Potato has went on a Christmas get away into the south mashed potato ocean. They have gone missing for these last 2 weeks. We assure everyone that they will be OKAY, we just have to locate the potato. Thank you, and don’t worry.

Have you seen my lemons? - Drawception

~Amelia

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January 17, 2021
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