Amelia's Kidney Journey

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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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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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feelings

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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