Amelia's Kidney Journey

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Category: Post-Transplant

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Has it really been 4-ish months?

Hello! It’s been a loooonngg time since we last updated! Lots of things have happened and for the most part all good!

I am back in school, but this time High school! I am still distance learning, but they have a much better system this year. It is the end of quarter one and I am doing pretty good! All A’s as far as I’m aware. I get everything in and my teachers have been really nice! I do have one class I go in-person for but it’s a small class and not in the actual school itself. I have been quite stressed about school because I really want to do good and so far I’m told I am. It has been tricky catching up from all the school I’ve missed over the past 2 years. But I’m getting there. I have a much better score in math than I’ve had in a long time. It has taken me a few weeks to figure out a good schedule for waking up at 7:00, But I’ve basically got it! It also is hard yet helpful in a way when Bones joins me during school, usually just sleeping!

Health wise I’ve been doing so good! I am now on once a month appointments and blood draws! This is after every two weeks. I’m just glad I don’t have to get checked out of my classes for them. I am also glad that we don’t have to go in all the time! My BK virus is completely not showing, or as low as it will usually be! But this is after about three different tests. Which isn’t super bad because last time it was many, many more and each time it got lower so it was all good! They also ended up adjusting a couple of my meds for that but all of my other labs have been really good, showing that I have been getting all of my water and my milk. (Even though milk has been tricky for me!) It is also saying that my kidney is working super well and it isn’t causing problems, so I’m on a lower of my anti-rejection med because it is working! I have been doing very well and have only gotten sick once this season, which was sort of surprising to me. I could have gotten sick so many other times but I haven’t, which is very good!

I have been able to do more lately even if that isn’t a super ton. I’ve never been able to do everything so I’m not upset by this. We have gone to the Utah Hogle Zoo a few different times and I’ve been able to walk some if it, spending the rest of it in a wheelchair so I can still enjoy the animals. We have gone on numerous day drives and camp outs. Just little things when we can add them in there. I have been able to go on more walks with the Dogs for my exercise. I’ve also been able to do more with my sister, we have gone on multiple outing every once in a while. Sometimes to just get out of the house.

I have been crafting a lot more because they lowered my med that makes me shake. So I’ve been doing lots of cross stitching. Which I very much enjoy even though it might take me forever to finish, because it’s a pre-drawn out cross stitching lap blanket. I think I’ve been working on it since August and I’m only done with a tiny bit. But I don’t mind as much as I usually would.

Hey everyone! now that I have been doing so much better and not much has been happening since school has started, this blog is going to hit a major lull. Because I am feeling better It’s just not going to be updated a lot. We will try to update every few months or so just for an update with reassurances about how we are doing as a whole family. This way you know. Thank you everyone for following and caring. It means a lot more that I can express.

~Amelia

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November 3, 2021
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Activities

School, September, October, and the August that lasted 15 minutes…

Hello again all! It seems like every time we blink another week has gone by. Then we keep saying “we need to update the blog” and all of a sudden it is another 2 weeks and another kidney clinic finished. I suppose that is good news though, Amelia isn’t having many problems to report. Since our last update…in July…There has not been too many things to report with regards to Amelia’s health.

She has been getting stronger and doing more, including some sewing. She made Halloween placemats for us. She has also been baking up a storm, learning new things and making Leatha a bit jealous.

School started in August and she has been doing online classes. At Parent Teacher conferences, all of her teachers gushed about how good she was doing. One teacher keeps giving Amelia days off from class because she is so far ahead of the other kids in the class! As of this writing, it is the last day of the semester and she is cruising along with all A’s to show for it.

We have finally gotten to monthly kidney clinic appointments! It is nice to only have to go once a month now, and Amelia doesn’t mind a monthly blood draw. We had to reschedule Octobers clinic because Amelia picked up a cold that is dragging her down. We know it is not COVID, she has had her 2 shots, but gets to have another because she is immuno-compromised.

Fall is upon us now, it has snowed and is getting colder, but It was nice this past sunday so we decided to take a family trip to the zoo. Amelia wasn’t feeling great so we dug out the wheelchair and headed out. We spent a lot of time at the elephants, remembering Grandma who passed a year ago. She loved the elephants.

The cold weather also took its toll on our garden, and we had to harvest all fo our tomatoes and squashes. And guess who was out there picking most of them…Amelia!

All in all we are doing well. Still looking for a house, but doing the best we can. With the infrequency of our updates we are wondering if this blog is still worthwhile. If you are reading this, please take a second and comment down below so that we know these updates are still of value. We are considering archiving this whole thing if it has run it’s course.

Thanks for reading, and keeping our family in your thoughts and prayers.

Still coming to you live 192 days into the new kidney,

-Justin

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October 20, 2021
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Activities

Is it really July already?!?

You know the time seems to slip away so fast… It is hard to believe July is almost over. It has been nice to only have Amelia on weekly blood draws and twice a week clinics. We have only been up there twice in the past month.

Amelia is getting better ll of the time. We have seen her go from being so tired and weak before the transplant to being up and going and wanting to get out and do things. She likes to go for drives and just get out. We are still careful with interactions because of her meds, but they are being reduced. She is off of all of her antibiotics, antivirals, and antifungals now. She is still on prednisone for a couple more months though.

They finally have her blood pressure under control, and it has been even and in a normal range for quite a while now. If this keeps up she will not have any blood pressure meds in the future! Along the other lines, the BK virus that is showing up in her labs is about the same as it was last week….that is good, that means she is fighting it to some extent. We want to avoid it throwing her off again and having to go on chemotherapy again. She has had enough fun for a while.

It is nice to not have to be so worried about Amelia right now. She is doing so well. She is becoming the pastry chef in the house. she keeps trying new recipies and finding things on the internet to cook. She bakes with Leatha sometimes and it is funny, Leatha gets relegated to sous chef and Amelia takes over. It s fun to see her personality coming out like that. She is a strong girl and it is showing in how she is taking on life

We are about a month out from starting school and Amelia is a bit worried about 9th grade now being High School. She is banking on them still having distance learning this year….As of now, they do, and hopefully for her, it won’t change. Otherwise, she is heading to Taylorsville High itself. Until we move at least.

We are still working on buying a house, but it hasn’t gotten much better in the market. We just keep trying and count our blessings that we have a place to stay. As soon as we can though, we will have our own house.

Well, that is the latest from the Matthews. Thank you again for following us and keeping us in your prayers. Our cup truly is overflowing with blessings through all of this year. We do appreciate it.

More to come as we know it.

Still coming to you live, 101 days into the new kidney,

-Justin

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July 21, 2021
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Activities

It’s been way too Hot, and I’ve been less productive.

All things considered, Not a lot has happened. It’s been getting hotter, so I’ve been inside all the time but I also can’t get burned all. Because of Meds it can be bad if it gets further than just a sunburn. We were able to go out and see fireworks for the 4th! We have been outside significantly more than before, I’ve been doing lots of walks and even went scooter-ing once! (it was a lot. Maybe not again for a little bit).

My kidney has been doing very good! We finally got my blood pressure settled and figured out, I’m off of more medications, and I’m on once a week blood draws. I do need to make sure I get all my water in with all the heat, it’s been a little tricky but I’ve been pretty good. We made yet another chart for me to fill out to help get all of it in. I have had a few more headaches lately but it shouldn’t be anything other than not having enough water. I also need to get lots (it’s the normal amount for someone in the same situation.) of Calcium. So Milk and cheese all the time!

They have found the BK virus more prominently in my blood the past few weeks. So they lowered my anti-rejection dose so I could hopefully fight it by my self. If that doesn’t work they’ll do something else. I’m not really sure what. But the BK virus is the same thing I had in 2017 when I got Chemotherapy for a few months to wash it out of my system. (Oh! that’s what they’ll do last if it continues to progress. Chemotherapy is a last resort.) My labs did come back and the BK hasn’t gotten worse. It’s staying where it was last. So hopefully it won’t increase at all and it goes down. I am off yet another medication. But only one. That’s okay though! I’m only on like 8 pills in the morning and 6 pills at night!

I have been reading a lot lately. Just like always. Finished like 3-5 books. I’ve also watched more of shows by myself this month than I have for MONTHS. I’ve also made so many different treats the past few week I’m surprised that they aren’t sick of sweets. I have made like 6 different types of cookies, two different Cakes, and muffins. It nice to be able to bake again to help with the stress.

~Amelia ❤️

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July 21, 2021
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Activities

The heat doesn’t change much…

Hello folks. Hot enough for you? I have decided that it doesn’t change much of the turbulence in the life of the Matthews. It has been almost 3 weeks since we have updated things on here, that is too long. We keep trying to get Amelia to post something, but we are still struggling. Maybe we can blame the heat for that.

Over the last few weeks, Amelia’s kidney has started to level out. it has gone from over-working to working like it should and it has now kicked in to help regulate her blood pressure. It regulates very well, and as of now, she is only on 1 blood pressure medication. We had some worries as this was happening though. She got really low on her blood pressure and almost passed out more than once. But the doctors have a handle on it now, and they are keeping Amelia in the right range with only the one medication. She has been on so many meds for blood pressure over the years, I am sure that the rest of her body is trying to figure out what is going on.

She is very excited that her clinic appointments are every other week now. She is looking forward to getting back to quarterly appointments. They still have to draw blood 2 times a week, just to keep tabs on her. That will go to once a week and then every other, and then once a month in the future as her transplant ages and she gets more balanced. I am looking forward to only loading her medicine box with her anti-rejection stuff and a vitamin or two. That will be so much easier. I am sitting here looking at a picture from when we brought Tristan home from the hospital and we got all of the kids together on the couch. Amelia was 4 and 1 year out from her first transplant. And just out of the hospital herself, but that is another story. I was thinking back to giving her medications then. She couldn’t swallow pills yet so we had everything in elixir form for her to drink. The pills are definitely easier.

We are also watching a virus called BK. That has reared its ugly head before and resulted in PTLD and a few rounds of chemotherapy. Last week the virus was on the low end of positive, but this week it is up slightly. They are adjusting her immuno-compromising medications to try and let Amelia combat this virus, so it doesn’t get into her kidney. Don’t google this, just trust me, the doctors are concerned and watching it closely so it doesn’t get to the PTLD again. Your prayers are appreciated.

Otherwise Amelia is feeling better and getting outside and doing things. She was a big help moving stuff out of one storage area to another even though it was the hottest day of the year. She has been walking a lot, and we even got her fishing again on Father’s day. She didn’t think she wanted to fish, but by the end of the trip, she was telling me that her pole was too old and her reel was broken so she needed a new one. Easy fix, I work in a sporting goods store. Then she decided that she was going to fish enough to need a license. She hasn’t had one of those for years. I told her that we had to go fishing enough to justify the cost (I really don’t care about the cost, but that is an excuse to get out and fish more…) and she agreed! That is miles and miles better than the past few years where she would just want to go for the drive and then just sit and watch. Next up will be fly fishing….or maybe ice fishing….

As for the rest of us, we are settling into our temporary house pretty well. Everyone is learning that minimalism isn’t so bad and we can get by. But then we realize that all of my camping gear is stored in the storage unit. In the back of the storage unit. and I don’t want to unload it all in the heat. So we are making do, and it is working. We are still looking for a house, but the market is still screwy. We tried to look at 4 houses last week, and our real estate agent came back and said that one was already sold, 2 didn’t take FHA loans, and the last only wanted cash offers in a hurry. Yea, thanks for that. So we are still looking. We have some great friends that are keeping an ear out for anyone who is looking to get their home for sale and maybe we can get in on that before it hits the open market. That may be the only way we get into a house right now. We will see.

Overall, we are doing well. It is so nice to have Amelia getting better that it isn’t even funny. I don’t have a ton of stuff to report, and that is a good thing. I firmly believe that our family is going in the direction that the good Lord wants us to go in. Even with all of the chaos and things happening, I see too many little things that happen just the right way or just at the right time to be coincidence. I know that there are more prayers than mine contributing to the things that we are doing. I want to thank each of you again for sending those prayers and well wishes, they are effective and answered in a very real way. I am a big believer in group and directed faith, it most definitely does work miracles. I only hope that I am able to pay it forward in sufficient quantity. Thank you again.

Well, that’s all for today. There will be more to come as we know it.

Still coming to you live, 75 days into the new kidney,

-Justin

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June 25, 2021
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feelings

Life stumbles on through the challenges.

Hello all. Since my last post just over a week ago, we have had some major changes. We have finished moving from our old house of 7 years and into a new place that is a major blessing, all thanks to some good friends that we met working with the Scouts over the past few years. It is not the best situation, but it will let is be together and keep our feet under us until we can find a new house. We had to pause for a bit on the house search but now we can hit it hard again.

Through the move, Amelia has continued to improve. She is stronger and has more energy, and when we ask her how she is doing, she has gone from the “Ehhh” answer to “Ok.” That is really huge for her, she has been “Ehhh” for quite a while now. It is really good to see her wanting to get up and move around instead of not feeling like doing anything but pet the cats. She still gets tired easily, but is getting so much better.

At the last kidney clinic they were able to reduce her medicines a bit more as her new kidney is finding its rhythm, but there is still a fine balancing act. Her blood pressure medicine that she has been taking is getting too strong for her now that the kidney is taking over that job, so that has been reduced, but there have been several days where her blood pressure has been very low, almost to the point of passing out. A call to the doctor and a further reduction of her meds has helped a bit, but we are waiting to see. Her body likes to respond slowly to changes.

She is still getting her labs drawn twice a week and she is not really happy about that, but it will change soon. We are excited to watch her get better and be able to get back to the “normal” Amelia that she was before her kidney started to go downhill.

For those that want to know, yes, she still has the original transplant. It is still marginally working and not causing her issues so they are going to avoid another major surgery for now. They are watching it closely though, and time will tell.

I do want to thank everyone again for reading this blog. It is cathartic to write and it is nice to know that it is seen and that people really do care. I also want to thank everyone who has donated to the GoFundMe. The outpouring of love and compassion from that really blows me away. I never knew that so many people cared so much. We are eternally grateful for the support, and humbled by your generosity. Thank you all.

More to come as we know it.

Still coming to you live, 56 days into the new kidney,

-Justin

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June 6, 2021
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feelings

The perspective of a 10 year old.

Today I bring you a guest post by Tristan, Amelia’s little brother.

HI. I am Tristan and I am 10 years old. My dad thought it would be fun to have me tell everyone what it has been like for me during all of the stuff with Amelia over the past year or so.

Before her transplant I kept wanting to do things with Amelia but she would be more and more tired and seemed sicker. She couldn’t do as much with me.

When they said that she would have to go on dialysis, i was kind of scared because I didn’t know what to think about that. I had never seen that before. When we got the call about her transplant, I was really happy, and relieved that she was going to get a kidney.

When Amelia, Mom and Dad went to the hospital for the transplant, I was happy but didn’t know quite what to expect. I was glad to see her later that week on a zoom call so that I could see how she was doing. I couldn’t visit her because of the covid restrictions. I did get to see her through the window and talk with her over a facebook call from outside the hospital. It was funny to have to do that.

I did like that I got to to go hang out with my Mom a couple of times while Dad stayed with Amelia. We got some food and hiked around the state capitol and up to the big U on the mountain. I also got to make a pinewood derby car for Cub Scouts with my Dad and we got to share the races and pictures with mom and Amelia when they were up at the hospital. It was nice to be able to have them a part of it.

When Amelia came home from the hospital i was really happy. I knew that she would be feeling better and able to play more soon. We all had to be super clean and sanitized. That was really hard, but we had to be careful so she didn’t get sick from anything. I had to come home from school and change my clothes and wash really well.

It has been fun to be with Amelia as she gets feeling better, she is getting back to her old self and I am excited to play with her this summer. It will be fun to not have her as sick for the summer.

Thanks for reading!

Tristan

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June 6, 2021
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feelings

Yea, it’s kind of like that.

Hello folks! Do you all remember when last march felt like it lasted for a year or two? Well this May is not following suit. It has been a long month for us, but it is flowing through our hands like water through a sieve. We are almost at Memorial Day. May is almost over, and we are almost moved out of our house of 7 years. Under protest. But that is another story. Here we are chronicling Amelia and Her Kidney.

Amelia continues to improve every day. Her incision is healed nicely, and she is balancing out her levels more and more. She is still nauseated and dowsn’t eat very well, she says everything tastes funny. She is however, gaining weight and the dietician is as happy as she ever is. The doctors are happy too, her blood pressure is evening out and they are reducing her other medications on schedule.

We have graduated from the 2 times a week clinic to once a week, but she does still have to have labs drawn twice a week. She is looking forward to when those are decreased, she is tired of getting poked!

While we all have been moving the house Amelia has been doing as much as she can to help while still not straining herself too much. She is getting stronger and stronger and does not get as worn out as she has in the past few months. That is so good. I am glad that she is able to do more and more and does not look as sick. Another couple of months, and people will not even know she had a transplant.

Thank you again for keeping up with Amelia and her story. Thank you for caring enough to come back and find out what is happening next, and thank you to all of you who have donated to the GoFundMe….we are truly humbled by the generosity and love that we are being shown.

More to more to come as we know it, still coming to you live 47 days into this new kidney,

-Justin

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May 28, 2021
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Amelia's Blog

It’s Mayyyyy and it’s been a loooonnnnng month.

It’s May and we have so much going on! The 12th was my 1st kidney’s 12th birthday. It’s weird to think about…. Especially since the 13th was the official 1 month of my new kidney…

I’ve been doing pretty great all things considered. My incision is looking great and I’ve been able to do a quite a bit more. I’m not taking the super strong pain meds and I haven’t had Tylenol around the clock (I’m still taking some, but it hasn’t been down to the minute or consistently.) I still get really tired and I’ve been having a few naps. I’ve went on a good handful of drives and just getting out of the house (mostly up to Kidney clinic two times a week ((NOT ANYMORE THOUGH!! its NOW only once a week for a bit longer. I’ll be on every two weeks after the next appointment))) I have (and will continue to have) my blood drawn 2 times a week on Mondays and Thursday. Which is Fine. Just annoying. Overall I think I’m just feeling pretty tired and Eh… Nothing bad but my body isn’t used to this kind of cruddy. Which is good! I shouldn’t get used to things like that! And once again, because of all my medications I’m still on Visitor restrictions. But those will be waning within the next few weeks. Thank you everyone for being so good with these restrictions!

I have started online school back up part time. I’ve been easily getting my assignments and such turned in. I’m glad that I’ve been doing distance learning this whole school year, it makes everything a lot easier. I enjoy doing school like this. I’m actually gonna be going back full time for the last 2-ish weeks to make sure I stay having decent grades.

We did get pictures done last week (a few are up in the photos if you’d like to look!) which was verrry tiring because we had, like, 45 minutes to get as many shots in the outfits we wanted, and I had 4 outfits. And they turned out nice! Afterwards we did go up a canyon and had just a relaxing hangout with a fire.

I’ve been able to do quite a bit more lately! Like pick up the cats, pack a few boxes, and SO many stairs. (Last weekend I packed a total of eleven boxes out of my room. Now there isn’t that much I have left out. I’m proud of it ((I didn’t lift anything; Leatha did all of that)) I’m still not doing everything and my siblings have been really good helping out where they need to. We’ve done a handful of puzzles (no where near as many as before) the current one being a 1500 piece Disney villain puzzle. I’ve also been reading lots. I haven’t really slowed down. (I’m gonna start reading classics (i.e. The Odyssey, The Adventures of Sherlock Holmes, and Jane Eyre.) because I have easy access to them as an e-book. Which is super helpful with all the chaos going on. It gets a little hard to read on paper. As much as I’d prefer that)

I really appreciate all the support and prayers we have been getting for every-crazy-thing that has been going on in our lives. It’s been really helpful and suuuper nice. So thank you everyone. It’s very nice to know that we have so much love and support even when it doesn’t feel like it.

~Amelia

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May 16, 2021
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Activities

On Amelia’s 12th Birthday…1 week before her 15th.

Hello all. It has been a couple of weeks since we had an update so here it is. Today is Amelia’s 12th birthday- the birthday when she got her first kidney transplant. It is hard to believe that 12 years has gone by since then, and now a month has gone by since her new kidney birthday.

She is doing pretty good with all of the changes in the past month. Her body is figuring out what to do with the new kidney and the kidney is figuring out her body. Her labs are hanging out mostly in good ranges and she has more energy than she has had in a long time. She does get tired easily, but she is always up for a drive.

With being a month out of transplant, she no longer has to go to 2 clinic appointments per week. She is up to just one a week on Tuesday. She is happy about that, but not very happy that she still needs to have labs twice a week. That will change as she gets farther out of transplant.

All in all, things are going well. We are very happy that her new kidney is working so well and helping her feel so much better.

Thanks again for reading this, there will be a new post from Amelia herself sometime this week!

Still coming to you live, 29 days into the new kidney, and 4380 days into the first one,

-Justin

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May 12, 2021
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