Amelia's Kidney Journey

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Category: Kidney

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The one about the last pre-transplant class

Today we met with the pharmacist for our last Pre-Transplant class. She gave Amelia a bunch of information, and was really nice to talk directly to Amelia for the appointment. Since Amelia is the one taking all of these, she needs to know!

I really like when the doctors talk to Amelia, not at Brenda and I and hope Amelia gets it. Now, when she was younger, and for the first transplant, Amelia didn’t understand any of this. Now that she is 14, it is great to get her prepared for the future when she will be living with this transplant on her own.

Amelia wants the cat to help….

I wonder how she is processing all of this, learning what Brenda and I have been doing with her for years, and wondering how she is going to handle all of it. Of course we will be there to help, but it is a bit daunting. I took over setting up all of Amelia’s meds years ago when we almost gave her 2 doses and Brenda and I determined that 1 person in charge was a good idea. Amelia helps me now, to load her pill box and keep track of what she is taking every dose.

Hopefully after this appointment, she will continue to be aware of all of the things she has to do. I also hope that there is not a hiccup that will keep her off of the transplant list for another month.

At the end of this appointment, the pharmacist asked Amelia for a bright thought to get her through the rest of the day. That is just fun and it is great that they are involving Amelia so much in this transplant process.

More to come as we know…

Coming to you live 35 days into the new Kidney Journey…

-Justin

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July 22, 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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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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