Amelia's Kidney Journey

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Amelia Rose Matthews is just a normal 14 year old girl.  She likes Harry Potter, even calling herself a Slytherin. She likes to draw and write stories.  To look at her, she is normal.  You would never know that she has been dealing with a serious disease her whole life.*Click Here for the full About page*

Great News!!! As of April 12, 2021 Amelia received a Kidney transplant!

Thank you to all who read here, to those who support us, and to the donor and their family. We appreciate you all!  This blog exists because we want to chronicle her new journey, from her first transplant failing, to the new transplant, much like we did in the past with CarePages.
Thank you for visiting Amelia’s site and supporting her.  Thank you for being part of her journey.

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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feelings

We are Officially Starting

July 7, 2020. This is the date that we received the letter officially inviting us to the transplant evaluation. This starts the process that will include labs, meetings with the surgeons and transplant team (many of whom we have worked with for years) and evaluations.

If she is determined to be a good candidate (again) there is a board that meets near the first of each month to discuss putting the child on the national transplant list.

This is wild for us. Before it was almost a foregone conclusion that she would get a transplant and be on the list. I don’t remember all of this process from before, but it must have happened, it just may not have been set up the same back then. It scares me just a little that there is a chance (all down to a vote) that Amelia may not be on the list. Granted that chance is smaller than a gnat’s eyeball, but still.

The whole notion that she needs more surgery and a new kidney is a lot to wrap my head around. I am nervous that this will draw out as long as it did before, and end up with her in dialysis for 2 years. At least we are not starting from an unknown, with a baby. Amelia is bigger and strong, it should be easier for her, but it is not easier for me as a parent to have this going through my brain.

We will continue to pray and hope for the best, right now it is all we can do.

Coming to you live 25 days into the new kidney journey,

-Justin

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July 12, 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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The Process Starts

Well, since Amelia had her clinic appointment, we got the packet to start the transplant process again. We just filled out and submitted the Pre-Transplant evaluation. That is the start of the process that will last for at least this month. There is a possibility that she will be listed on the nationwide transplant list in August, but nothing is guaranteed.

They gave Amelia a few shots of a steroid that should help her keep what kidney function she has left for at least a little while. The doctors (and us) are hoping to avoid dialysis and go straight to a new kidney.

While this is all happening, we are not forgetting Carol, that wonderful human who gave Amelia her first kidney. It is easy to think that a transplant is a fix for all of Amelia’s problems, but it is just a really good bridge to the future.

We have always known that she will need to have more than one transplant in her life, and we are very thankful that her first one lasted for 11 years. That really is a long time for a transplant to last in a child.

You will find stories of adults who have had a transplant for 20 plus years and are still going strong. The problem with the transplant in kids is that they grow. They get bigger, mature, hit puberty and all of that fun stuff. That stresses a transplanted organ no matter what it is. 11 years is an excellent run.

Another concern that some people may have has to do with rejection. Amelia is not rejecting her kidney in any way. She has none of the signs of rejection at all, her kidney is just wearing out. Even the doctors were surprised that her kidney function went down so quick and it is shutting down without a whole lot of warning.

It is also failing on its own, nothing that Amelia has done is causing this.

For now, we wait and pray for Amelia’s health and to keep her kidney working as long as possible. I will be working on reposting some of our old carepages posts as well as some of the other things that we have written about Amelia over the years.

As for this Blog, I am going to start the dates from the day that we got the results of her biopsy: June 18th, 2020.

Coming to you live, 15 days into this new kidney journey,

-Justin

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July 3, 2020
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Amelia's Blog

The First Doctors Appointment

Today was the first doctors appointment talking about needing a new transplant, And I think its stupid! It is a bit overwhelming to find out about all of this, and we’ve known for a few weeks from the Kidney Doctors! All in all, I’m not exited about getting a new kidney. I mean sure it’s very important, but I’m not ready for all the hospital and time up there. I’m just happy that I don’t have to to Dialysis at this point in time.

I’m super grateful that my kidney has lasted this long [11 Years!!!]. Now I don’t remember anything from my first Transplant (Because I was younger than 3) So this whole thing is brand new for me, and kind of scary. I’m glad I have my siblings, my cats, and my parents for support.

~ Amelia M.

PsBattle: Shocked cat : photoshopbattles

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June 30, 2020
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