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

Let the new kidney reign!

Well folks, as I sit here, 3 1/2 hours have passed and we just talked to the surgeon. He said Amelia is out of surgery and doing well. He said that she got a really good kidney that woke right up and started making urine so he thinks it will do really well for her. We have to wait for her to get out of recovery and get set in the ICU before we can see her. They say about an hour, or 45 minutes as of this writing. The surgeon thinks she may be out of the ICU tomorrow and home in a week.

This is such a relief for her to be out of surgery and doing well. It is also great to be looking forward to her getting better and being our normal Amelia again.

Thanks again to everyone for their thoughts and prayers, I know they helped.

More to come as we know it,

Newly into the New Kidney,

-JUstin

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April 13, 2021
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feelings

Holy Kidney’s!

Hello folks. Well after 300 days on this new journey, the time has finally come. Amelia has a new kidney.

That’s right, a kidney was found, and as of this writing it is being put in Amelia.

Here’s what I know so far: We got a call last night that a kidney was available that didn’t have any matching problems and was a really close match to Amelia. They were doing the final blood tests and stuff last night and then they called and said it was a go. we ended up coming to Primary’s late so that they could get Amelia’s covid test and some other labs done and keep her NPO for the surgery.

Everything was on track for this morning and they wheeled her down for the surgery at 1030, and she went into the operating room at 11:10. As of now, we are still waiting and hoping.

For the big questions: No, we do not know the donor, or anything about the donor. We most likely will not. That is ok. All we know is that the donor was a darn good match for Amelia, and we are very thankful for the selfless act of donation.

Next, Amelia will be keeping her old kidney as well as this new transplant. Amelia will have 2 kidneys for the first time in 14 years. Her first kidney was on the right side, near the front of her body. The new kidney will be in the left side and near her back more.

We don’t know for sure how long we will be in the hospital, but the basic idea is this: Surgery is 3-4 hours. Amelia will then go to the ICU for 24 to 48 hours so that they can monitor her for blood pressure and make sure she is recovering from the anesthesia ok. After the ICU, she will be up on the transplant unit on isolation. She will be there for 3-4 days, all depending on how she is recovering. We are looking at 7-10 days overall for this stay.

This is all so much to process, but such a wonderful thing. Amelia got emotional as she was going back to the OR as she finally got all of this stuff at once. This is such a blessing for Amelia and the rest of us. She will be feeling somuch better, and willbe able to go and do things without getting so worn out. We are very grateful to the donor, as well as allof you who are reading this; your prayers and good thoughts have carried us through the past few months that has led us up to this point. Thank you all.

Still coming to you live 299 days into the new kidney journey, and 0 days into the new kidney,

-Justin

*****More will be coming this afternoon******

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April 13, 2021
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The Kidney Journey

Aprils Update…………..

We had yet another kidney clinic appointment Tuesday. It has only been two weeks. (But the next appointment wont be for a whole month because I haven’t had any extra changes.(( ALSO!! This appointment was significantly shorter than they have been the last few months!))) I’m doing about the same as I have been… physically…. My labs are a little higher but that is to be expected at this time. My Meds are also a the point where they changed my labs a bit. Because my labs are affected by my current medication doses, they have reduced my iron and another med that helps my kidney out. So its really good! They also requested for me to have another shot that helps my kidney. Its the same one as they have done before its just a repeat. But it is going to help.

I do not need Dialysis as of this appointment, but I am getting closer. Sadly.

I’ve been extra tired and nauseated the last few days, but the pharmacist says its because of my one medication (that they’ve reduced) I was able to get some activity in when we went to the park on Easter. I was also able to go to a Young Women’s activity for the first time in a little while, it was fun but I got quite tired afterwards. But it has been interesting to see when when I still feel mostly the same but still…crappy.

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April 12, 2021
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Activities

In with April…

Well, April has arrived and time marches on, as does the wait for the kidney. Amelia has been hanging in pretty well with all of these challenges she is having. At least she is not in pain like she has been in the past. I don’t like seeing her like this, when her normal is “ehhhh”. I keep telling her to change her scale and make that “ehhhh” into “fine” so we know when she is going down. She is still trying to do things normally, but she is struggling.

We went to a couple of Easter egg hunts this year. The first one Amelia made it all the way across the soccer complex to her area and got a few eggs in the chaos. We then went to Riverton where they had an interesting way to do Easter. Around the whole park they had stations where the kids could do activities and get eggs and a punch on a card. They went around the park, got all of the punches, and got entered into a drawing for 1000 eggs. I gvuess we didn’t win, but they had fun. Amelia rode the whole way around the park in her wheelchair and did as many of the activities that she could. Cameron was great pushing her around and doing a bunch of the activites while he was pushing her in the chair.

After that we went fishing. She didn’t do a whole lot, but she had a good time getting outside and seeing some actual sunlight. She still got worn out. She did have another session at kidney clinic this week. She is just hanging in there for now. She is not ready for dialysis as of now, so that is good news. We also found out that she will be able to avoid having to get a fistula if dialysis is needed. That helps her get ready for dialysis. We just hope that we can get her a kidney before she needs to go on dialysis.

On that note, I am finally getting the next round of tests done to see about donating a kidney for Amelia. It has been a very slow process for sure, but I am hoping that it will speed up at this point. We will see what the tests hold after tomorrow.

Thanks for sticking with us and continuing to keep up with Amelia.

Still coming to you live, 294 days into this new kidney journey,

-Justin

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April 8, 2021
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Amelia's Blog

Marchh is longg…

So far this month has been oh so very long. I haven’t been feeling as well. I have been taking more downtime and falling asleep later than I have before. I’ve been incredibly nauseated for one reason or another, and I’ve been getting headaches nearly on a daily basis. It’s getting to a point that I don’t want to do anything much lately besides reading and just sitting around. But its perfectly fine, the cats are happy.

We’ve had 2 different Kidney Clinic Appointments in March.(Because of increased crumminess I now need to go to a Kidney clinic appointment every two-ish weeks, which is as fun as it sounds) Each of them turned out alright, nothing bad but still not great. I had an Echo scan this week. That’s where they did an ultrasound on my heart to make sure it’s still working with all my high blood pressures. (I’m also going to be doing a 24 hour blood pressure monitor because of that.) The only thing they saw was my left heart vessel is leaking a tiny bit with how high my blood pressure was, but it should fix it’s self soon with the extra medication.

The appointment I had on Tuesday was okay. During, said appointment, we were informed that my kidney function is cut down by half from six months ago. But I don’t need Dialysis yet! It is steadily going down and not just dropping; which is really good! They are going to be doing an ultrasound of my neck veins to make sure they’ll work for my chosen Dialysis catheter; because during my first Dialysis when I was young, they used the same veins many, many times. I’m still not doing great eating (because of the nausea) So they want me to try and eat more. My Nutritionist also said to cut down on my sodium based off of one comment. Even though I’m not eating that much to begin with. -_- . But I’m still trying to do as much as I can. Its still not super good.

I’ve been doing really good in school, it been super easy. I’m all the way caught up and slightly ahead. Next week is Spring Break and also the end of 3rd quarter, so its super good. I’m acing most of my classes! I’ve been in a mood lately where I feel like I need to do homework but I have nothing to do! It’s silly but apparently I take after my sister, in yet another thing…

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March 25, 2021
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feelings

Beware the Ides of March

Oh how time flies when there is chaos abounding! It has been a while since our last update. Amelia has been hanging in there but she has not been feeling great. She is nauseated most of the time and just feels crummy. Since our last posts, she has decided that food tastes bland, cats are about better than anything else, and he blood pressure is an arbitrary number that she doesn’t like very much.

We had a kidney clinic 2 weeks ago where things seemed to be going ok. Her labs were in a decent range and she wasn’t swollen up so they decided that she didn’t need dialysis yet. They also changed her blood pressure medicine to better regulate her pressures because they were getting high. That new medicine gave her grief and terrible headaches for about a week. She started taking her blood pressures more often and they were all high, like really high, and she was on 3 different medications to lower them. That earned her another kidney clinic today and an EKG to check her heart.

The good news is her heart seems to be ok, but her kidney is not. The doctor is estimating that her kidney function is about 12% now; down from about 20 or so back 6 months ago. That is most likely why she is feeling crummy and just not feeling great at all. She is starting another 24 hour blood pressure monitor test tonight or tomorrow to see how her average is. I think that this is her 3rd one. I just did mine for the donation people, and it wasn’t much fun. We went fishing for part of the day and it was not always easy to fish when I had to stop every 20 minutes to have a blood pressure taken. Brenda and Amelia had a ton of laughs watching me just stop and stay still, right after I cast out into the river. I didn’t even try to fly fish, I don’t think that would have worked very well at all.

Amelia has been really tired lately, even going for drives where she sits in the car wears her out. We got her a new wheelchair so that we can still go places and she can do things with us without wearing her out so bad. It is hard to watch her get down so far. i don’t like seeing her getting so sick again, but she endures it well. She is still one of the strongest people that I know. She has endured so much in 14 1/2 years, and she is not done yet.

They started talking to her more about dialysis and the fact that she will need it to at least feel better in the near future. I guess it will be me and Amelia, dialysis buddies again. That last dialysis was almost 12 years ago now…

On Thursday, we will be up at Primary’s again so that they can do an ultrasound on the veins in her neck to see if they can place a dialysis catheter near there again. Amelia would rather have the temporary catheter than the fistula in her arm, and we let her choose. I hope that she can do the catheter, it will be easier on her and not permanent.

I am still in the long, drawn out, painstakingly slow process of getting worked up to donate her a kidney. I have passed the first two steps, and the actual blood tests and things are pending in the near future, like later this week or early next week. I am hopeful that we can get all of this through and done, and I can match her enough to keep her off of dialysis and get her feeling better. We will just have to see how that goes.

Well, we just keep on keeping on at this point. We will be updating more often on here because more things are starting to happen. Thanks for continuing to read about Amelia and sending her all of the prayers and good thoughts, it does help.

Still coming to you live, 279 days into the new kidney journey,

-Justin

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March 23, 2021
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Amelia's Blog

Early February

These last few weeks were sort of uneventful. We had Kidney Clinic (WHICH WENT ON FOREVER AND HALF A YEAR! Even though, we only saw three people and were in the waiting room for forty-five minutes. To start. Then we spent, who knows how long, in the actual clinic.) They said that I was doing pretty good right now (even though I’m not feeling great) and wont need Dialysis for now, until we see them in a month (not guarantied we might have a while) . I just need to make sure I get all of my food and medication in.

(Edit: The clinic called us some time this week, saying that ” i’M nOt AllOWed tO haVE aNy mOrE VirTUAL appOINTments, beCAUSE oF THe diffERENce oF tHE hoME anD thE clINIC SCales” So for now on in-person appointments. Just like before. Also, my Dietitian says that I don’t have any current restrictions ((but I don’t need as much protein! Its not needed in my diet, though I can still have meats.)), But I NEED to make sure to get enough calories, so I don’t lose weight and need Dialysis sooner.((I am basically allowed to eat anything and everything that I can. (((junk food included))))))

I’ve been doing good in school (I’ve been clear and able to get all my work done on time, and efficiently. For a few days there I had ((almost)) NOTHING to work on) I had Parent Teacher Conferences on Thursday, I did quite good, even with internet problems. (they were all zoom meetings) I’m quite proud of myself.

Almost everyone (plus my grandma) watched the Super Bowl last Sunday. I ended up leaving the room and helping my sister once I figured that the Buccaneers would win. I DID eat quite a bit though (Me along with everyone else during the game).

We had Valentines day. It was different than I remember (that being it just felt different and not another holiday. ) We had a nice dinner (i.e. Surf and Turf) and our regular valentine letter exchange. It was also nice over the weekend to see family.

Some time last week we needed to move rooms (like we do every so often) because of spring cleaning. (it was funny, my little brother ((who I was exchanging rooms with)) REALLY didn’t want to move rooms. It took a bit of convincing ((he likes it A LOT now, he just took a tiny bit of time))) I am now down stairs with my sister and all the cats. Its been quite a bit of work, because my room is currently in transition. But, its perfectly fine! It’s worth it.

I have finished four, over two hundred pages, books. In less than a week…….. I’m also in the middle of another one….

Potato Potato Corner!

We found Potato Potato, they were hiding in a cave. So we celebrated, they got to see some cats and watched a movie.

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February 16, 2021
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Amelia's Blog

JaNNnNNuaRY

I REALLY haven’t been feeling well lately. Mainly just my kidney function is going down (we think…. ((It’s not low enough to need Dialysis yet. Thankfully. But it’s coming closer))) My labs have been slowly getting worse. I’ve also been nauseated (more so than usual) and have been needed to take/do things to help with it. But it was better today, to the point I was able to eat a full meal.

School has been stressful ( But what else is new? ¯\_(ツ)_/¯ ). Last week, my sister and I made 44 ‘Star Wars’ cupcakes; half of them chocolate with green mint frosting and red ‘Light-sabers’, half of them vanilla with red strawberry frosting paired with green ‘light-sabers’ .

We’ve been able to go on a drive or two, and have seen a few new views. It’s nice to get out of the house sometimes.

Then, some cat pictures …

Potato Potato update

They are still missing, so for now my cat, Dr. Bones is standing in.

~ Amelia

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January 28, 2021
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feelings

Exiting January, kicking and screaming.

January has been, interesting to say the least. We have been watching Amelia get sicker and sicker over the past few weeks. She has lost much of her appetite for anything that doesn’t include copious amounts of garlic, because that is a strong flavor that she can actually taste with all of her medicine. We made garlic fries ala Seattle Mariners and she ate a whole bunch!

She has been more lethargic and gets worn out easily. Even her beloved drives seem to wear her out more than they should. It is disheartening to watch her go down like that. When her disease first hit, it was rather quick and then took a long time to get to to normal. This go around, she has gone downhill from normal rather quickly. It is hard to see for us as parents.

We still have hope though. When the time is right, she will get her transplant. These trials willhave a purpose in the future, and we will all be stronger when we get through it.

Thanks again for all of your continued prayers and well wishes.

Still coming to you live, 219 days into this new kidney journey,

Justin

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January 28, 2021
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Activities

New Year’s Beginning

The new year has started, we’ve been making new goals, and having new hopes for what is to happen. So far 2021 (For us at least) has been pretty good! We’ve been doing good and haven’t had any disasters. So far we’ve been able to make our New Years Goals and have written them out. Some of my goals I’m super excited for because they’re crafting goals. Like I wanna make 3-4 cross-stitching patterns, finish 2-3 Knitting projects. and try 4 new baking recipes of things I’ve never made before all before 2021!

Health wise, I haven’t been feeling great. Just a bunch of overall crumminess and not feeling well. I’m having problems eating again, mostly because of my medicine making me not be able to taste a lot. We had a doctor’s appointment Tuesday, and they said that I’m doing pretty good! My labs have been doing really well (considering everything that’s going on) I’m eating and drink all I need to!

We haven’t gotten any new news about the kidney list, but we’re still hoping and waiting for something, sometime soon.

We had Christmas, and it was super fun, I was able to do a lot more that week thanks to a medication time change. We got to see a lot of family members and talk to other family members. Christmas itself was harder, probably due to lack of sleep. I was able to finally sleep for the first Christmas Day I can remember. But overall it was super fun and I’m glad we had as much…everything as we did.

I also got a few things for Christmas that helped spark a few of my goals, like a New personalized Apron with Minnie Mouse on it that my Grandma made, kntting yarn, and cross stitching fabric and some cross stitching patterns!

New years went similarly. We had a Seafood dinner and had lots of fun waiting for midnight, we also watched the Towering Inferno, Because of our tradition to watch disaster movies on New Years eve.

2nd quarter for school ended this week, and I did considerably better than last quarter. I got everything in and my grades are alright! I’m actually really proud of how I did. So hopefully I’ll do better next quarter. One of my new classes is gonna be CTE which is all the Sewing and Cooking, so I’m excited to see how that gonna pan out with Distance Learning.

  • Baby Yoda!
  • Dr. Bones!
  • Random pineapple
  • Dr. Bones
  • My Cookies!
  • Tortuga
  • Captain in the egg box

Potato Potato Corner

Our dear Potato Potato has went on a Christmas get away into the south mashed potato ocean. They have gone missing for these last 2 weeks. We assure everyone that they will be OKAY, we just have to locate the potato. Thank you, and don’t worry.

Have you seen my lemons? - Drawception

~Amelia

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January 17, 2021
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