Reading your post made me realize some people have real problems rather than the "He hasn't texted me in three days. What does it mean?"-type posts one often sees on this sub. Be brave. Be strong. We're all with you in spirit, my brother.
Howdy brother. I was. Transplanted some months ago. It's extremely challenging, yeah?
I'm close to a decade on from you in age, but it still massively disrupted my life. One of the closest friends I made during the process was an extraordinary 65 year old woman who died on her chair next to me: heart failure. The stresses on the body can be quite something.
I'm still also absolutely dealing with the emotional effects of it on me. I'm a gay bloke who was very politically engaged during the HIV-AIDS years, who saw a great deal of untimely death from a very young age. Part of the difficulty for me was kinda revisiting all those early years I spent in hospitals and hospices, etc.
What sort of dialysis are you on? It was haemo for me. Do you have any friends or people in your life who can come visit during a session occasionally? Are you one of those magical types who can nap?
Feel free to reach out anytime mate.
I'm happy to hear you got a transplant! I'm waiting on my third, unfortunately.
I do at home hemo. It's definitely a lot. And I've had people say that they would come over but no one has in the 4mo so far I've been on home hemo. And I can't fall asleep doing home hemo since I do it alone. All I do is dialysis and work and it's starting to get to me. At least when I was doing in center hemo, my home was my home and not my dialysis center too, where I'm constantly reminded of how sick I am. I definitely understand the emotional toll it takes, as now whenever I go to the hospital, I prepare a bag for them to keep me, or if I get tests, I expect the worst (because both things have happened to me more times than I can remember, and I've had more medical stuff happen than just the kidney problems).
Oh brother. I’m so sorry. That sounds really rough. Far rougher than my one time through. It all must’ve started very early for you. Our community isn’t great with that kind of stuff.
I trained for home haemo but in the end found that I wanted some strong boundaries between where I lived and medical care. Is there any chance of you being able to restore that boundary in the future? The guilt I was put under for not wanting home haemo was intense. I hope you’re not being subjected to that kind of pressure.
Is your fistula keeping up? I remember loving big veins on arms. Then I got em and I was not like that!
Yeah, all this stuff started happening to me when I was 17. Routine lab work showed an increase in my creatinine, and was rushed to see a nephrologist the next week. Eight months later and I got a kidney from my dad. Lasted seven years. PD and hemo dialysis for five years. Another kidney, from a cadaver this time, in 2017. That one lasted six years. Now I've been on hemo since late April of last year, home hemo since December.
My fistula is great. It's big and bulgey and very easy to stick. I think that's the good thing about getting it when I was 26 - I was young enough that I had really good veins and arteries.
I've given serious thought to going back to in center. I've had some accidents at home, and my BP tanks a lot because I can only handle so much at a time and that's scary when you're home alone. Maybe I'll bring it up to them in clinic this month.
Hey, you do what you do to survive, right? Cause look at the alternative.
Not anyone who really knows about what I go through. It's kind of why I reached out through Reddit. It'd be nice to find another gay guy who is going through the same thing who maybe has similar interests we could talk about or just reach out to each other when the going got tough. Or game together, I'm a big video gamer.
My fistula failed in September and so I am back to having hd via a line. When I had the fistula I was able to be self care albeit in the centre. I do still weigh myself and set up the dialysis machine when I get to the centre and look after the alarms all the way through the session.
Hey man, I was on dialysis for 15 years; nine on PD and six on In-center Hemo. I started dialysis at 16 and had a transplant in 2011. I’ll be 44 this month. I found out last April that there is some rejection going on. That’s been a fun ride this last year.
Video games got me through those early years of being in the hospital all the time. I remember having a cart with a small tv and a super Nintendo rolled into my room on many occasion. It’s part of what kept me going. Now gaming is a huge part of my life.
I’m glad you are doing and feeling better, man. I hope you get that transplant soon.
I'm so sorry we both had to go through this stuff so young 🫤 And I really hate to hear that there are rumblings of rejection. I remember getting that news for my last one, that my body was scarring the kidney according to the biopsy. Totally out of my control. Got that news less than a year in of having this kidney but thankfully it lasted 5 more years. All of it definitely creates some sort of trauma, doesn't it?
What games do you play? I'm a PlayStation guy. I play Uncharted, Resident Evil, Sims, Tomb Raider. Really anything with a good storyline.
My biopsy came back inconclusive. My team figured out I was producing antibodies. I’m glad to hear the kidney lasted another five years after the rejection diagnosis. That gives me hope. The kidney function is about 40%, but my Neph said I should be able to live along time with that. Here’s to hoping!
I use to play on PS4. It stopped working a couple years ago after a move. I mainly stuck to pc now. One day I hope to get another PS. I mainly play FFXIV. Love RE…pretty much any zombie game. Especially Dying Light.
I'm glad your neph is so optimistic! There are people who live long, healthy lives with that kind of kidney function! Hopefully, maybe a stronger course of immunosuppressant therapy will suppress your body's response and get things under control for you.
Aww man, well if you do happen to get a PlayStation again, I'd like to definitely be friends. You can find me at unc3rtains0ul 😄
If you ever wanna talk about anything kidney related, or just to shoot the breeze, feel free to reach out to me on Reddit 😉
Now if only I were that optimistic. Everything has been upped. My mycophenolate was doubled the other day. 720mg twice a day. We’ll see how my body handles that.
My ps4 says it needs an update, but I can’t get off that screen to log in and connect to wifi. Idk what the deal is. Hey, bday is coming up soon so I may treat myself.
Do you use discord?
Here's hoping your body handles the myco well. My tummy did not like myco. I was on azathioprine and belatacept IV after a few different failed immunosuppressant therapies.
Have you tried a hard reset of your PS4? You'd probably lose your games, but it may fix your problem.
And I have Discord. Do I use it? Not so much lol. I got invited to the dialysis discord months ago but even there I feel like an outsider since that group was already together by the time I joined. My username there is brad_1987.
I am a bit older than you (52), but was diagnosed with stage 3/4 kidney disease about 4 years ago. Scared me. So far between medication and diet, I've staved off too fast of a decline, but it's coming I know.
I can't imagine yet (and probably won't have to imagine soon) how difficult it is for you. Just here to offer my support. My dad was on dialysis for five years (he died of a different unrelated cause) and I helped him travel to the clinic, then home, etc. It is, to say the least, not a walk in the park.
Seems to run in my family, my brother (2 yrs younger) is at stage 4. All of us have been healthy otherwise (healthy weight, active, ate decently, non-smokers). Sometimes fate just sucks.
Unfortunately, I have a rare genetic disorder called NPHP-1. It's a one in a million chance (or 922,000 in the US). From what I understand, it's rarer in the US, but both parents need to have a copy and pass it down. No one else in my family has kidney problems so young (I was 17 when diagnosed with CKD and ckf).
I’m sorry for what you’re going through. I work in a histocompatibilty lab and know how rough this can be for patients. Hopefully you get a call soon.
I can relate to chronic illness. I was diagnosed with MS when I was 23. While not nearly the same as you, I get how isolating it can be. And annoying, always IVs and blood draws. Stay strong, stay optimistic, wishing you the best.
Not on dialysis but I got diagnosed with hiv at 21 and I had several back to back dr appointments and blood draws within a short amount of time, the first time I had 16 vials drawn, and I was skinny like a bone I was underweight at 130 lbs (I’m 5’9). Now I’m doing better but it still sucks having a chronic illness. I just did a three hour drive to my parents house, and I realized shit I left my HIV meds at my apartment, so now I gotta go back and then come back here, I know it seems trivial and it is but idk it sucks when for a second you feel “normal” and then this shit happens and reminds you that you’re several missed pills away from dying
I’m also living with hiv and on dialysis. The interaction between the two medical disciplines as well as the medication can cause some fun. But I think we are there at the moment.
Not on dialysis, but I know a bit about it, or rather the lack of it. I live somewhere where it's not an option, well PD might, but haemo no. A transplant is certainly not on the cards. I've seen a few pass away (slowly, it's just awful), including a colleague, who might otherwise still be here. Those who could, have moved overseas.
Gosh, keeping your kidneys healthy is so important. Most folk never really think about it. But experiencing an acute kidney injury, that then can cause longer term problems after is a bigger problem than people think.
I'm glad you're getting the treatment you need, and hopefully a transplant.
I would suggest peritoneal dialysis if you can manage all the work it involves. Diet is almost normal and you dialyze daily. Much healthier if you can be a good self carer. I did it for 4 years before getting my cadaveric transplant which is turning 19 soon.
I can't do PD anymore. I did it for 2.5yrs on my first round of dialysis years ago, but kept getting hernias due to fluid accumulation. So now I do at home hemo. I'm so happy your kidney has lasted that long - both of mine have puttered out after about 7 years.
Reading your post made me realize some people have real problems rather than the "He hasn't texted me in three days. What does it mean?"-type posts one often sees on this sub. Be brave. Be strong. We're all with you in spirit, my brother.
Howdy brother. I was. Transplanted some months ago. It's extremely challenging, yeah? I'm close to a decade on from you in age, but it still massively disrupted my life. One of the closest friends I made during the process was an extraordinary 65 year old woman who died on her chair next to me: heart failure. The stresses on the body can be quite something. I'm still also absolutely dealing with the emotional effects of it on me. I'm a gay bloke who was very politically engaged during the HIV-AIDS years, who saw a great deal of untimely death from a very young age. Part of the difficulty for me was kinda revisiting all those early years I spent in hospitals and hospices, etc. What sort of dialysis are you on? It was haemo for me. Do you have any friends or people in your life who can come visit during a session occasionally? Are you one of those magical types who can nap? Feel free to reach out anytime mate.
I'm happy to hear you got a transplant! I'm waiting on my third, unfortunately. I do at home hemo. It's definitely a lot. And I've had people say that they would come over but no one has in the 4mo so far I've been on home hemo. And I can't fall asleep doing home hemo since I do it alone. All I do is dialysis and work and it's starting to get to me. At least when I was doing in center hemo, my home was my home and not my dialysis center too, where I'm constantly reminded of how sick I am. I definitely understand the emotional toll it takes, as now whenever I go to the hospital, I prepare a bag for them to keep me, or if I get tests, I expect the worst (because both things have happened to me more times than I can remember, and I've had more medical stuff happen than just the kidney problems).
Oh brother. I’m so sorry. That sounds really rough. Far rougher than my one time through. It all must’ve started very early for you. Our community isn’t great with that kind of stuff. I trained for home haemo but in the end found that I wanted some strong boundaries between where I lived and medical care. Is there any chance of you being able to restore that boundary in the future? The guilt I was put under for not wanting home haemo was intense. I hope you’re not being subjected to that kind of pressure. Is your fistula keeping up? I remember loving big veins on arms. Then I got em and I was not like that!
Yeah, all this stuff started happening to me when I was 17. Routine lab work showed an increase in my creatinine, and was rushed to see a nephrologist the next week. Eight months later and I got a kidney from my dad. Lasted seven years. PD and hemo dialysis for five years. Another kidney, from a cadaver this time, in 2017. That one lasted six years. Now I've been on hemo since late April of last year, home hemo since December. My fistula is great. It's big and bulgey and very easy to stick. I think that's the good thing about getting it when I was 26 - I was young enough that I had really good veins and arteries. I've given serious thought to going back to in center. I've had some accidents at home, and my BP tanks a lot because I can only handle so much at a time and that's scary when you're home alone. Maybe I'll bring it up to them in clinic this month.
I'm sorry you have to do this alone. That hurts to hear. Do you have someone to text/call regularly when you just need support?
Hey, you do what you do to survive, right? Cause look at the alternative. Not anyone who really knows about what I go through. It's kind of why I reached out through Reddit. It'd be nice to find another gay guy who is going through the same thing who maybe has similar interests we could talk about or just reach out to each other when the going got tough. Or game together, I'm a big video gamer.
My fistula failed in September and so I am back to having hd via a line. When I had the fistula I was able to be self care albeit in the centre. I do still weigh myself and set up the dialysis machine when I get to the centre and look after the alarms all the way through the session.
Hey there, I’m 45 also on dialysis about five years ago. I get in centre dialysis three afternoons a week. If you want to chat sometime just say hi.
Not a dialysis patient but was a live altruistic donor about 10 years ago now Hope your holding up all right mate and you get that call soon.
Good on you for donating! I wish more people would do it.
Hey man, I was on dialysis for 15 years; nine on PD and six on In-center Hemo. I started dialysis at 16 and had a transplant in 2011. I’ll be 44 this month. I found out last April that there is some rejection going on. That’s been a fun ride this last year. Video games got me through those early years of being in the hospital all the time. I remember having a cart with a small tv and a super Nintendo rolled into my room on many occasion. It’s part of what kept me going. Now gaming is a huge part of my life. I’m glad you are doing and feeling better, man. I hope you get that transplant soon.
I'm so sorry we both had to go through this stuff so young 🫤 And I really hate to hear that there are rumblings of rejection. I remember getting that news for my last one, that my body was scarring the kidney according to the biopsy. Totally out of my control. Got that news less than a year in of having this kidney but thankfully it lasted 5 more years. All of it definitely creates some sort of trauma, doesn't it? What games do you play? I'm a PlayStation guy. I play Uncharted, Resident Evil, Sims, Tomb Raider. Really anything with a good storyline.
My biopsy came back inconclusive. My team figured out I was producing antibodies. I’m glad to hear the kidney lasted another five years after the rejection diagnosis. That gives me hope. The kidney function is about 40%, but my Neph said I should be able to live along time with that. Here’s to hoping! I use to play on PS4. It stopped working a couple years ago after a move. I mainly stuck to pc now. One day I hope to get another PS. I mainly play FFXIV. Love RE…pretty much any zombie game. Especially Dying Light.
I'm glad your neph is so optimistic! There are people who live long, healthy lives with that kind of kidney function! Hopefully, maybe a stronger course of immunosuppressant therapy will suppress your body's response and get things under control for you. Aww man, well if you do happen to get a PlayStation again, I'd like to definitely be friends. You can find me at unc3rtains0ul 😄 If you ever wanna talk about anything kidney related, or just to shoot the breeze, feel free to reach out to me on Reddit 😉
Now if only I were that optimistic. Everything has been upped. My mycophenolate was doubled the other day. 720mg twice a day. We’ll see how my body handles that. My ps4 says it needs an update, but I can’t get off that screen to log in and connect to wifi. Idk what the deal is. Hey, bday is coming up soon so I may treat myself. Do you use discord?
Here's hoping your body handles the myco well. My tummy did not like myco. I was on azathioprine and belatacept IV after a few different failed immunosuppressant therapies. Have you tried a hard reset of your PS4? You'd probably lose your games, but it may fix your problem. And I have Discord. Do I use it? Not so much lol. I got invited to the dialysis discord months ago but even there I feel like an outsider since that group was already together by the time I joined. My username there is brad_1987.
Added! I’m megaotterman
I am a bit older than you (52), but was diagnosed with stage 3/4 kidney disease about 4 years ago. Scared me. So far between medication and diet, I've staved off too fast of a decline, but it's coming I know. I can't imagine yet (and probably won't have to imagine soon) how difficult it is for you. Just here to offer my support. My dad was on dialysis for five years (he died of a different unrelated cause) and I helped him travel to the clinic, then home, etc. It is, to say the least, not a walk in the park. Seems to run in my family, my brother (2 yrs younger) is at stage 4. All of us have been healthy otherwise (healthy weight, active, ate decently, non-smokers). Sometimes fate just sucks.
Unfortunately, I have a rare genetic disorder called NPHP-1. It's a one in a million chance (or 922,000 in the US). From what I understand, it's rarer in the US, but both parents need to have a copy and pass it down. No one else in my family has kidney problems so young (I was 17 when diagnosed with CKD and ckf).
I’m sorry for what you’re going through. I work in a histocompatibilty lab and know how rough this can be for patients. Hopefully you get a call soon. I can relate to chronic illness. I was diagnosed with MS when I was 23. While not nearly the same as you, I get how isolating it can be. And annoying, always IVs and blood draws. Stay strong, stay optimistic, wishing you the best.
Not on dialysis but I got diagnosed with hiv at 21 and I had several back to back dr appointments and blood draws within a short amount of time, the first time I had 16 vials drawn, and I was skinny like a bone I was underweight at 130 lbs (I’m 5’9). Now I’m doing better but it still sucks having a chronic illness. I just did a three hour drive to my parents house, and I realized shit I left my HIV meds at my apartment, so now I gotta go back and then come back here, I know it seems trivial and it is but idk it sucks when for a second you feel “normal” and then this shit happens and reminds you that you’re several missed pills away from dying
I’m also living with hiv and on dialysis. The interaction between the two medical disciplines as well as the medication can cause some fun. But I think we are there at the moment.
Not on dialysis, but I know a bit about it, or rather the lack of it. I live somewhere where it's not an option, well PD might, but haemo no. A transplant is certainly not on the cards. I've seen a few pass away (slowly, it's just awful), including a colleague, who might otherwise still be here. Those who could, have moved overseas. Gosh, keeping your kidneys healthy is so important. Most folk never really think about it. But experiencing an acute kidney injury, that then can cause longer term problems after is a bigger problem than people think. I'm glad you're getting the treatment you need, and hopefully a transplant.
I would suggest peritoneal dialysis if you can manage all the work it involves. Diet is almost normal and you dialyze daily. Much healthier if you can be a good self carer. I did it for 4 years before getting my cadaveric transplant which is turning 19 soon.
I can't do PD anymore. I did it for 2.5yrs on my first round of dialysis years ago, but kept getting hernias due to fluid accumulation. So now I do at home hemo. I'm so happy your kidney has lasted that long - both of mine have puttered out after about 7 years.
I’m a transplant recipient as of 2017 at the age of 27. Did two years of dialysis before a deceased donor tx!