Amelia's Kidney Journey

Header image

Category: pre-transplant

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

Read More

July 14, 2020
5 Comments
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

Read More

July 12, 2020
0 Comment
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

Read More

July 12, 2020
0 Comment
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

Read More

July 3, 2020
0 Comment