Amelia's Kidney Journey

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Category: The Kidney Journey

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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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