This is my first time ever doing something like this so I’ll jump in with introducing myself. My name is Chantasia and I’m 20 years old. I was first diagnosed with Chronic Kidney Disease in 07’ when I got terribly sick and we couldn’t figure out why. Now that I’m stage 5, I’m getting ready to try and find a donor for a transplant. It’s hard to find a donor because it’s weird trying to talk to someone and saying “hey, lend me one of internal organs real quick 😂” . I’ve never had to speak to anyone for something like this before. I mean, I’ve tried. But it’s just weird to me and everyone I talked to hasn’t spoke to me in months. 🤷🏼♀️ I just pray everyday for a miracle in hopes someone answers my prayers.
My kidney doctor told me about this website because I mentioned something about feeling like I don’t have anyone else to talk with that’s dealing with the same issues I am. I’m hoping I can find people who wants to get to know me instead of classifying me as the “girl with kidney disease.”
If you like country music and dogs, we’ll get along just fine lol Thank you for reading my introduction! ❤️
Welcome to the group. My name is Charlene and I was diagnosed in 2001 when I was 21. I was already at stage 4 renal failure, but 17 years on and I'm at stage 5 with 4.5% renal function but still holding back from dialsyis although I do start training with my dad next week on home HD.
I live on my own but will be doing at my parents house. See my mum and dad both tried to be my live donor but it didn't work out that way after 18months of a rollercoaster of emotions. Mum wasn't a match but dad was. However dad's renal function was boarder line so mum went through all the tests to do the paired exchange however it was found that most of her renal function came from the one kidney so excluded. After months of consideration thst decided to you look at my dad and all tests went well so we were given a date Feb 2018. Two weeks before on repeated tests his function had fallen so it was cancelled.
I understand what you mean about asking people I won't because I think the people that know me know what I'm going through so surely they would offer if they wanted too. I would give my kidney to any one even a stranger to make someone life easier.
I too and feed up with being know as the girl with kidney disease or for people to look at me and the first thing they say is how are you or you're looking well. Do you ever feel like shouting at someone that says you look well because really you feel like death inside.
You've joined this group so you don't have to go through this journey alone as I bet you try and protect your loved ones how you feel, you paint a smile on your face and just get on with it.
You can post on the forum or message people privately don't ever feel like your alone.
Take care Chantasia your so much more than the girl with kidney disease we all are
Thank you so much for sharing your story with me Charlene. ❤️ It’s just weird that I’ve been dealing with this for so long I must of forgot there are other people out there dealing with it too. I never even heard of kidney disease until the doctor brought it to my mothers and I’s attention. I was young, and I thought it was just a really bad case of the flu to be completely honest. As I got older I started to pay attention and realize that this is real and I really have to be careful with my body and how I use it. Growing up I was always center of attention.. but not in a good way. I constantly had older adults ask me if I was doing okay or if I was feeling better.. I just said yeah because I honestly felt fine and didn’t think anything was seriously wrong with me. Now that I think about it, for a long time after finding this out, I never paid attention in my doctor appointments or took my medication because I thought it would all become a phase I’d get out of the loop of in a few years.
Now I make sure I’m taking my antibiotics and a vitamin B pills everyday. I’m kind of thankful it’s just those two because when I first started taking medication, I think I was taking about 7 or 8 at a time.
I’ve been working so hard to get this transplant.. I’ll admit, I’ve lost hope more times than I can count, but I know if I keep going, the result is what’s going to be worth all the fighting and struggling.
I’ve asked many friends and family to be my donor but they either don’t match my blood type or they’ve had/have medical problems in which I know the transplant teams wants to stand clear from. But I pray and ask for gods help any chance I can because I know he’s been a big help to my situation. Many may not believe, but it really doesn’t matter because I do. I’ve witnessed his work wonders before my very eyes. I’ll keep you in my prayers tonight Charlene, god bless ❤️
It doesn't matter who believes and who doesn't you find comfort from off and that's the main thing
Keep taking your medication and all the other stuff that your told and hopefully your get your transplant soon.
Are you based in the US or UK as I know the transplant list works definitely depending were you are.
It's a hard thing to accept at a young age and when your young your parents take responsibility for your medical care and it must be hard to transition into looking into your own care
You don't need to be a blood match to be a donor you could do the paired exchange programme. If you haven't been told about it, it maybe worth discussing with your potential donor or your transplant ci-ordinator for more info.
I’m in the US. I know that there’s literally thousands of other people on the list and how it works if I end up having a match. I enrolled in what they call “A to B” program which I send blood work in about every 6 months or so and I do monthly blood samples so they can watch my GFR and Creatinine. I just had my follow up about a week ago and they said everything’s looking good and I am reactive on the transplant list. I was on hold because my insurance is making me jump through hoops and telling me I need to get this checked and that done.. and I don’t know any of the things they need from me until they send me a paper saying I’ve been declined... I got two so far this year.
I’ve been doing all of this practically by myself and I keep thinking that nobody is going to help. It upsets me a little because if I was able to donate a kidney to someone in need, I would do it in a heartbeat. But I don’t think I’m asking the right people or I’m just not using the right words.
Taz you would donate in a heart beat because you have first hand experience on what some one with CKD goes through. Other people look at us and think she doesn't look to bad. Don't give your self a hard time there is no right or wrong way to ask someone to donate. I don't think people understand the process and scared. You have to think they are going to have to put themselves through pain and discomfort have time off from work so there would be financial implications I imagine especially with all the insurance you require in the US.
Your not alone we are all here for you. Don't give up hope. Have you been given a counsellor to talk to if you don't feel you can be open with your family?
I'm glad your on the transplant list and hope you get that call soon your far to young to have this worry.
There will be a lot of drugs to take once you get your transplant but that's the easy part.
Keeping everything crossed for you, you will get there and lean on this group for support you don't need to go through this journey alone
I just want to take this opportunity to welcome You! I am know you are going to find so much comfort here. I joined last month and it was the first time in years I felt Home. It is a whole new wonderful feeling to be understood without having to explain. You have found new world where all of us Patients of all kind have such an unspoken bond. It's a relief, its a great support system and its a world of information. I love all your responses already. I love your upbeat spirit and I know I and we are all hear for you unconditionally. It is so nice to meet you. Welcome to where day or night 24/7 someone is always on here and those who you haven't seen in months, on here you are never alone. Your story is amazing and so are you! Please be aware you can do on Waiting Lists for a Transplant Donor at 20% GFR you don't have to wait until 15%. Keep that in mind for later on when it gets time as you can get on the list way sooner in case your doc doesn't tell you.
I am EY@NKFSavdMyLif, 53 yrs old and I will be absolutely thinking of you. I just wanted to pop in and welcome you!
I think you must have misread the post I've been a member for 2 and a bit years but thanks for the post. I was responding to Chantasia you response was very good and great to read.
Oops I am sorry Charlene! Actually I was trying to welcome Chantasia but trying to t to Charlene but scrolling down all these wonderful many replies I responded in the wrong place! TY so much! I must have mixed up both your names begininng with Ch my apologies. Very nice to meet you! I will copy and repost below in the correct place so Chantasia sees it. I was in a hurry and openned my mail. I was going to come back later but I saw her reply and that was more important to me to respond quickly. Ty so much for alerting me! Loved your replies to her as well! I began here last month so its always wonderful meeting someone new. Have a great day!
I'm currently on Perotineal Dialysis (roughly 11 months in) and I was born with 1 kidney with CKD. I can totally relate to how you feel! All throughout school I was called "gimpie" because I was always on crutches due to developing gout and fibromyalgia at around 12 years old. I also always brought my own food to things since I've always had diet restrictions. I grew a thick skin pretty fast since my kidney disease became an obvious point for people to make fun of me for or to make me feel guilty for, whether it was telling me that I didn't deserve leadership roles because of my gimp status, or missing practice or class from doc appointments, so needless to say it was hard to make friends with people who were interested in me as a person and not as a charity case- and this was before I even looked sick! Once I started dialysis, it turned into remarks about me having more color to my face, that i gained or lost weight, and the age old question of how I was feeling. I started to just say "like I'm in a perpetual state of dying" to get people to stop asking.
It wasn't hard for me to ask for donors though, because everyone I knew knew about my CKD (it unfortunately became a hallmark) and wanted to help. Full disclosure: it was no less awkward.
For a little more background, I'm 21 and was away in college before this whole dialysis thing happened. I went to the hospital for an infection when they pulled a renal panel and I got a call the next day about being in kidney failure. The next few days were spent getting my ducks in a row so I could go home and by the next week I was rushed to the hospital for emergency hemodialysis since I had developed a heart rub. Fast foward a few months and I was transitioned to Perotineal dialysis (highly recommend btw), and I started looking for donors.
I dunno if you also thought that this whole kidney disease thing was going to just blow over and you'd be fine, but I did for years and thought that if i did what the doctors said that I'd be fine and my kidney would be fine. Obviously I was wrong, and the adjustment period was really difficult for me personally. It took a while for me to accept that this was my life and yeah, I may be the "girl with kidney disease", but people forget that we have hopes and aspirations for life and that we aren't charity cases.
I know it seems hopeless now, but your angel will come and you will get a transplant! You are not alone in this, and there are a ton of people who are going through this too. A tactic that I used when asking for donors was just telling my story and ending with asking if they were interested in being a donor. A lot of people that I've asked were willing because I explained my aspirations for a career and how i had to put education on hold for my health. Many people tend to be more compassionate if they know your story and why you need one (because apparently just needing to live isn't enough). Also encouraging friends and family to reach out and tell your story for you can give you a wider audience. It's crazy how fast word of mouth can travel.
Sorry this is a wordy post! If you ever need a friend to vent to or to compare notes with, feel free to message me! It can be isolating to be the only one you know that's in your age bracket with CKD, so I'm always here if you want to talk. This site is a safe haven for us with CKD, so please don't hesitate to post!
Good luck and keep being the wonderful human you are!
Oh don’t apologize! I feel like I fit right in when I read everyone’s story. Everyone on in my school knew about me but I don’t think they really understood what was going on with me. I always had a special diet at school and everyone always asked me why I got apple juice instead of milk 😂 making friends was sort of hard because I also developed anxiety and depression from a young age. But I had a few close friends who seen me for who I am and not what I’m dealing with medically.
I’ve been discussing dialysis with my doctor just Incase it was ever my time to start. She said it could possibly be years until I need to be on it, so we’re praying I can get a transplant way before I even come close to starting dialysis.
And the whole charity thing, I highly agree with that. I would make post on Facebook and other social media and people will comment to have me private message them and then they either never reply or back out. Like, don’t make yourself look good in the comments if you can’t even look my my message.
Thank you for sharing your story and all the kind words. ❤️
You got apple juice too?? I thought I was the only one!
I have plenty of people trying to make themselves look good on social media whenever something happens too, and it takes all of my energy to not call them our on it. It's like dude, don't post that you care and want to visit or whatever if you aren't willing to A.) Visit me at home, or B.) Find another way to help and not ignore me when everything is hunky-dory. I went through a period just this year where most of my friends didn't talk to me until I'm in the hospital or have news and didn't bother to tell them. It really affected me emotionally and I had to reevaluate my worth and how I wanted to be treated, verses how things were currently going. A few depression slumps and panic attacks later, I figured it out. My circle now is pretty small, but I know that these people have my back and will actually make plans and not treat our friendship as a convenience.
I developed depression and anxiety too at around 12 years old (basically once I started showing symptoms), so it definitely makes doing things that are seemingly normal difficult to do. Hopefully your dialysis is actually a few years away! I was told that by my doctor and ended up in kidney failure and on emergency hemo 8 months later. Dialysis definitely isn't the smoothest and transplant is optimal, but it's always good to be prepared!
By the way, I love dogs and country music too! I just forgot to mention it in my initial post haha.
That’s crazy about the apple juice thing because I thought I was the only one too! 😂 but then again, I didn’t really know anybody dealing with the same thing I was in school so sometimes I felt like a queen because I got treated differently, and other times, well, I felt like an outcast to be completely honest.
I had friends here and there all throughout my middle and high school years. Crazy how I only have a maximum of 2 friends now. But I know these people would always be down to seeing a movie or just doing a simple FaceTime call to catch up. But once I started developing my anxiety and depression, that’s when my friend groups started to get smaller and smaller.. and that’s when the bullying started. I was constantly picked on for my hair (because I have very thin hair) and it got so bad one day I just cracked under pressure and ran home to cry because that’s the only thing I really could do. Then when the girls who bullied me graduated, I started to come out of my shell, but not until my senior year. By this time, I was almost ready to graduate and working my butt of to walk across the stage.. I was always going out with friends or constantly staying over at their houses.. Now, I’m 20, and rarely go out (crazy right.) I was supposed to last night but as soon as I agreed to going out, I just wanted to be at home. It’s not so much of my kidney being the issue, sometimes I just feel different from everybody else. Music and my dogs help me feel less different. They teach me no matter what I look like or how I function, if I want to play and have a good life, then I can only make that happen. & country music is like yaaaasssss I love it so much lol I actually volunteered at Faster Horses a few years back and got to see Jason Alden, Sam Hunt, Granger Smith, and a few other artist for basically free 😉 and the beer tent I was working at was at least 20 feet from the stage so that was a plus too haha.
Hi! You sound a lot like me! I , too, was encouraged to reach out to family in hopes of a kidney.(I have a large family) so I posted it on our family Facebook page. I’ve had 4 people say they would be tested then blew me off. I’ve endured comments such as “let somebody else do it, they never do anything for the family”. Well I can tell you it hurt me to the core and I wish I’d never put it out there. I am also stage 5 with dialysis looming. Nobody seems to understand. They see me and think she doesn’t look sick, so they assume it’s not bad for me. I have found great support here and helpful information too. I try to stay focused on the new advances being made in kidney disease today. I’m also learning to live in the moment because the future is too terrifying to think about. My faith keeps me moving forward!
I too have my dogs!! Five of them! We are in Texas, and yes we love country music! You are in my prayers! With God, all things are possible 😀
5 dogs?! Omg, I would love it at your house. 😍 I have two pits and they’re the biggest babies you’d ever meet. If I could post a picture I would lol. & country music, I’m highly obsessed with Like Combs at the moment. It changed every now and then 😂
& I completely understand when you hear negative comments back about the help you’re looking for. I had so many people “interested” but I still haven’t talked to them in 5+ months. Nobody checks in, so what’s the point on keeping them updated?.. I’ve had people ready to give me a transplant right on the spot once I told them about needing one, but they unfortunately had medical issues relating to their kidneys and I know that once you’ve had kidney stones for example, you’re likely to get them again.
But thank you for sharing with me, I really do appreciate it! I don’t feel alone anymore ❤️
I know! I don’t even bother with updates anymore. As far as my family goes, I seem to have been forgotten. Thank goodness I have my husband or I’d be totally alone in this. I just don’t understand it. If I were healthy and someone in my family needed a kidney, I would gladly be tested. I couldn’t even get anyone to do that!
One of my dogs is a pitbull and I have 3 of his babies. Then I have a golden retriever. Keeps me busy.
If you need anything please don’t hesitate to contact me.
Without my music and my cat Would find it very hard to get thru each day! I encourage anyone who is going thru this journey and feel you are alone, get a pet! support local animal shelters.
I have two pits who are my world. They’re always there for me when I feel like nobody else is. They make me feel less depressed and less alone. & as far as music, I just love blaring my music in my car and singing my little heart out. Music and animals are gods best gift to the world. ❤️
Welcome to our forum. Feel free to post questions, discuss your feelings or the progress you are making on your donor requests. There is usually someone who has gone through the same thing and people who will listen if you just want to get out your frustration.
Hi and glad your here, I am currently stage 5 at 9 %, waiting for a donor, I have used the facebook and other social website platforms. I have had flyers printed up and distributed, put paint on the car windows with contact info and had a write up in the paper. In the meantime none of my family has come forward and I was very angry for a while about that. I went to a presentation by the National Kidney Foundation about finding a living donor and try to get to informational sessions to help educate myself, that is important. I have PKD and will be starting hemodialysis next week. I am very frustrated and angry about that although some people seem to think anger is a waste of time I feel I have the right to my feelings. The people that I actually sat down with and asked for a kidney have avoided me ever since, even my best friend & cousin. My thoughts and prayers are with you, keep advocating for yourself and take good care.
P.S. not much of a country music fan but LOVE Dogs & Cats ! I have my music and cats and dogs that keep me going and a wonderful 26 yro. son. I also continue to work and as difficult as that is most days now I think it helps me as well.
You have every right to be angry. It’s hard enough to even ask someone for a kidney, but not getting a simple yes or no can really make some people mad. I know I was/still kind of am the same way. It’s just crazy how all of us dealing with CKD would donate one of ours if we had the chance. But the people we ask don’t know what it feels like when we get sick and feel like death is quickly approaching. They don’t understand how tired we can get. They would understand if they were us for a day. I’ve actually been called “lazy” and a “spoiled brat” by my sister because she’s been working most of her life, and I’ve had a couple jobs here and there, but I was mostly sick during the time she was living with me.
But all of us, dealing with this, we know. We know it sucks the life out of us. & it’s hard to explain these feelings to someone other than our doctors. I was thinking about doing the hemodialysis if I were to ever go on it. If you don’t mind me asking.. Does it hurt to have the fistula in? or is there any restrictions that come with it other than having to get your blood drawn from your other arm?
Thank you for replying to my post. I’ll be sure to keep you in my prayers tonight. I pray you have the energy to get through the tough times and that you will find a donor before you know it. ❤️
Hi, I so hear what you are saying, lately when I stand up to walk I can hardly breathe and do in fact feel like the life is being sucked right out of me. And you are right, no one who has not gone through it understands. As for the fistula, it was an easy surgery, I just recently had a revision as well, and will have staples out this week. Mine was placed in my wrist. Short of a little pain, nothing bad, I have had no problems. I was told not lift anything heavy but I have and have not had a problem. I am not saying to not listen, you don't want to mess up the fistula that was just work related stuff that I wouldn't give up. The Dr. did write a note saying that I should not be doing any heavy lifting but I have chosen not to use it at this point. The recovery for me was that I returned to work next day after both surgeries. Honestly I am not the bravest person but this really was not bad at, I hope that will help with some of your anxiety. As for following directions I don't always which is not smart cause it could mess up the fistula, so as far as that goes do listen to what your Dr. tells you.
Hi, I am hoping to transition to it. I need to get a partner or aid that would be available 5 times a week for 2 hours a day, that is what my Dr. requires that I would need. I will definitely let you know as things progress. Thank you, my thoughts are with you as well !
Hi Tazer98. Back in 2013 my son and I were in the same situation as you. He was just 23 then and ESRD hit us hard. Like we went from Stage 0 to Stage 5 in a matter of a few months. Here is our story. I hope you find inspiration and help through reading it. Now nearly 3 years post-transplant, he is doing ok. We have tough times every now and again, but we are so very thankful for his donor and for getting his life back. Hope you have someone to help you along in your journey..My thoughts are with you. kidney.org/newsletter/findi...
I think you will love this site. I’ve only been on a couple days and everyone seems nice. I love all music but esp rock but I love dogs so looks promising. I feel like that those people may not have been true friends or maybe just not sure how to be around because they declined. I hope you get that miracle you are looking for.
I just want to take this opportunity to welcome You! I am know you are going to find so much comfort here. I joined last month and it was the first time in years I felt Home. It is a whole new wonderful feeling to be understood without having to explain. You have found new world where all of us Patients of all kind have such an unspoken bond. It's a relief, its a great support system and its a world of information. I love all your responses already. I love your upbeat spirit and I know I and we are all hear for you unconditionally. It is so nice to meet you. Welcome to where day or night 24/7 someone is always on here and those who you haven't seen in months, on here you are never alone. Your story is amazing and so are you! Please be aware you can do on Waiting Lists for a Transplant Donor at 20% GFR you don't have to wait until 15%. Keep that in mind for later on when it gets time as you can get on the list way sooner in case your doc doesn't tell you.
I am EY@NKFSavdMyLif, 53 yrs old and I will be absolutely thinking of you. I just wanted to pop in and welcome you!
I apologise that I put this reply in the wrong place to the wrong person and Charlene too the time to reply and alert me to it. But what a wondeful thing came out of it Chantasia! I got to meet someone new. What a wonderful community this is. Always helping each other!
That’s alright, we all make mistakes. It’s only human.. thank you for welcoming me and reading my post! ❤️ I will be thinking about you as well. I keep everyone I have met on here in my prayers in hopes everyone can be happy and live a healthy lifestyle no matter their age. We all deserve the best, but we all know you have some hoops to jump through but the outcome will be the miracle we’ve all been waiting for & deserve. ❤️
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Welcome to where day or night 24/7 someone is always on here and those who you haven't seen in months, on here you are never alone. Your story is amazing and so are you! Please be aware you can do on Waiting Lists for a Transplant Donor at 20% GFR you don't have to wait until 15%. Keep that in mind for later on when it gets time as you can get on the list way sooner in case your doc doesn't tell you. 
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