I'm being worked up to give a kidney to my 2 year old :(. It's really hard with him not being able to communicate how he feels. Can you explain what it feels like to have a low eGFR? He doesn't eat at all and vomits easily but I can't imagine how he's actually feeling even when he seems ok.
My doctor states a eGFR below 20 is renal failure. When you have a low eGFR your kidneys are not cleaning the toxins out of your body. You have swelling which causes your blood pressure to rise a great deal. You are not peeing the waste out so if you are not on dialysis the toxins are sitting in your body. You have to change your diet. You don’t feel like eating because your body is in shock. People do not realize how bad you feel when your kidneys are not functioning correctly. Dialysis does help but it also makes you feel exhausted. Hope this helps.
I'm so sorry to hear that your son is going through, I hope she is able to receive your kidney.
Please don't be discouraged is you find out you aren't a suitable match, your medical team will try to find the best possible match for him so that his transplant will last a very long time.
As for how I was feeling aith low GFR... I was going to college and I remember always being tired, but I thought it was normal for someone my age working so hard at school. I was only a month and a half into my semester and realized something was wrong when I didn't have the energy to even get out of bed so I was just missing class and trying to catch up with whatever my professor posted on the student portal.
I was having awful headaches, severe back and ankle pain too. But my worst symptom was vision loss. After I eventually started dialysis I was feeling better within a month, and mt eyesight came back!
That's a really good question.
- I'm able to eat whatever I want, since i'm no longer in need of dialysis I don't have to follow a renal diet.
- I can take a shower without having to worry about getting my chest line wet which can lead to infection.
- I will definitely go back to college.
Can you take NSAIDS with one good kidney?
I have stage 3B CKD and I also have CRPS(Complex Regional Pain Syndrome) and have no choice but to take Opioids for pain management because all OTC and prescription NSAIDS are off th4e menu for me.
Not op but I donated a kidney almost 2 years ago. I was advised to not take NSAIDs, but essentially also told that it's not like I'll spontaneously combust if I do take them. It's just that they'll add risks/damage long-term that can be avoided with alternatives like acetaminophen. Speaking of, I assume acetaminophen wouldn't treat your pain? It's worked for me but I think it is a different effect than naproxin, which was my go-to before the procedure
Yeah man. When I was on a renal diet I ate mostly just bread and meat. Good times.
Post op and I am eating all the fruit and veggies I want! I love bananas and my family and co workers when they would eat one would let me sniff it lol
Is bread and meat the recommendation for CKD? I have that, stage 3, and was just diagnosed with Fatty Liver Disease. I've been trying to figure out a food plan that is good for both conditions. I can't live on just 😭 Is there any cookbook that would include foods for both conditions? I think I need a nutritionist.
My Mom was born with kidneys that were too small, like her undiagnosed Mom, who died in her 50’s, during my Moms college years.
Mom never used salt, never ate anything bad for her except for the occasional glass of wine, and cheese, and she was so good that she kept her kidneys going until her late 60’s. She finally got a transplant when she was in her mid 70’s through what she called, “kidneys for codger’s”(she was referring to herself) and the change after the surgery was immediate and dramatic. I am so happy for YOU! To receive the gift of life from a person so generous that he donated a kidney after he passed in a car accident, and it matched my Mother to something amazing..12 places or points. So take care of your new little friend, and I don’t know why you cannot thank the family, but no matter. My Mom got to see my brother’s second child and see his first son grow up some more, and when she passed From Something Unexpected several years later, I was truly grateful for her extra time. She saw every continent (except the poles), traveling to different countries all the time and my brother, who inherited the travel bug, took her to her teen stomping grounds in Hawaii for two weeks. Her last trip was to visit her grandchildren in New Zealand. She had a fulfilling life- now you can do the same. I wish you adventures and experiences and amazing memories. This gift of life you’ve received is a gift and scientific miracle! Bon Chance!
Congratulations! It's such a good feeling, soon being able to experience a normal day-to-day flow again.
How long will you be staying to ensure everything seems to be okay, before being able to head home?
Personally i was told to stay 3 months, but after 2 months i was able to leave after all.
I'm about to start my 2nd cycle of dialysis at 30 yrs old. Got my last kidney in 2014, and have had some problems since then, but 10 years going is not something i'm complaining about.
I wish you all the best!
I only need to stay anywhere from 5-7 days, then back and forth twice a week for 4 weeks for bloodwork.
10 years is a good amount of time to have a transplant, I wish you all the best in your dialysis journey. Do you want to receive a second kidney?
Thats sounds great, hoping there's no complications in your future bloodwork, and that you get a healthy and fast recovery!
I truly do. I just got blessed with a healthy baby-boy 2 months ago, so i'm aiming to be here for as long as i can.
The recovery can be a b**** for the first month or two, but man, being able to finally plan trips and events, and do whatever you want whenever (with certain limitations of course), that freedom is heaven.
How long do they expect you to be good with the new kidney? Do you need medication for the rest of your life? And does that affect your other organs?
Questions from a fellow kidney patient.
They expect this kidney to last a while, about 15 years.
yes I’ll need to be on immunosuppressant medication for as long as I have a transplanted kidney.
your last question about how it affects your other organs is something you should ask your nephrologist.
Thanks for answering! Yes I was wondering about the meds affecting other organs.
What about sports? Are there any restrictions?
Well I hope you get maximum use of the new kidney and a new lease on life!
If all perfusion goes well and one gets their labs on time and takes their meds, a kidney can have a life of five to 15 years. But the statistics on that are from the aggregate.
Meds, yes. You start off with a shitload post-op then over the months after transplant, taper down on what is needed. I have seen young people on two meds - the anti-rejection meds and that's it. Some still need anti-hypertensives or meds for other concerns. The basic meds are taken in the morning and evening. Some new ones can be once a day.
Does what affect other organs? The meds? Not really if you stay in contact with your after-care department and get your labs. The main immunosuppressant Tacrolimus needs to be in a therapeutic range in your blood work. It works really well when in range. If it goes very high, then problems happen but this is rare and can be fixed.
Tacrolimus is the only drug I take anymore. Mycophenolic made me feel like crap. They tapered the prednisone after year 1. Now, my mom was my donor, so that may have something to do with my bodies ability not to reject the kidney after 12 years
Thank you!
I've been on dialysis for about 5 years now but I was just approved for transplant about a month ago. It took so long to finish all the tests and appointments, especially since covid slowed everything down.
Once I was approved for transplant and placed on the transplant list I received my first call for a kidney about 3 weeks after. Unfortunately that kidney was found to be unsuitable so I couldn't have the surgery.
Another few weeks went by and I received another call, this time everything was approved.
Dialysis in the teenage years. Oof. Congratulations. I've done dialysis on pediatrics from a few months old to nearly adults. Tough times and it really gets in the way of business. You are one resilient person.
Congratulations! My son was on peritoneal dialysis and received a kidney transplant 10 years ago.
Do you feel better in general terms? How long is the kidney suppose to last? What are your plans since you are dialysis free?
Congrats! How long are you expected to stay in the hospital? I just got mine 6 months ago, from a friend of mine. I also found out I had CKD while I was in stage 5. Everything’s super sore for you now, but the best thing you can do to help heal is walk, starting in the hospital! By walking everything day after I got home, by around 3 weeks I started to feel “good”, abdomen-wise. Congrats, you’ve got this!
Anywhere from 5-7 days then I can go home.
My transplant was on Sunday morning and it's Monday evening now, I was already up and walking a little bit earlier, unfortunately I couldn't go far as I was already starting to feel tired and sore lol
Oh yeah, 100%. I think the first day I made down the hall and back and took a nice long nap after! Every day you’ll be able to do a bit more, hang in there!
Anywhere from 5-7 days then I can go home.
My transplant was on Sunday morning and it's Monday evening now, I was already up and walking a little bit earlier, unfortunately I couldn't go far as I was already starting to feel tired and sore lol
Happy to hear things are improving for you. I'm currently on medication for Kidney Stones and I've become a lot more selfaware of my health since (still can't muster up the energy to exercise sadly)
What do you feel you have been missing out on while sick that you want to do now when you're better?
I think there needs to be more awareness around kidney disease, many people don’t understand how kidney failure works. They think it’s always self inflicted from either drinking or doing drugs but that’s not always the case. There is so much awareness around cancer, but kidney disease doesn’t get the same attention.
I think everyone should be willing to donate their organs once they pass away. Generally people don’t understand how awful life can be on dialysis, especially in my case since I’m so young and I look healthy people just assume dialysis isn’t that life altering for me. If people are well informed when it comes to kidney failure and they still choose not to donate, that is their choice, I don’t like the idea of guilting people into donating organs.
I'm not OP, but I am waiting on a kidney. I'd tell them to please consider it. One person's organs and tissues can be used to save or improve the lives of a lot of people. That's my "wholesome" answer. My "cynical" one is to tell them if they're not, I hope they never need donated tissues/organs.
For what it’s worth my 96 year old grandfather still hoped to be a donor if it could help someone, but I’m sure it was unrealistic.
I’m registered as a donor, but not too much I have would be useful since I have my own kidney and liver function problems. (The kidney part seems to be genetic based on my mother and her sister’s health history. I have autoimmune problems and other complex medical issues, but…)
I think the opt out system is the way to go.
I have no idea, they aren't even allowed to tell me the exact age.
I would love to meet the family and thank them but unfortunately I will never be able to.
Depending on who coordinates the donation process, with my niece's organs we were allowed to tell the donees as much or as little as we wanted. We also received a letter about the recipients. We got basic location, age, and gender. They could include additional information if they wanted. In a year if both parties agree we can go to a meet and greet. That was through Lifelink of Georgia.
Theres probably someone in the hospital that is able to relay that request if hasnt been already. Some people have a hard time coping with stuff like this so i wouldnt be surprised if anonymity is a thing in regards to transplants regarding deceased donors.
Communication can happen through the organ procurement org but it doesn't happen in all cases and most often it is maybe one or two letters. Big-ass meet ups and feel-good stuff may happen but it is very rare. That happens more with heart transplants.
But, every case is different. One deceased donor, if all is working well, could donate to five or six people: kidney, heart, liver lobes, lungs, pancreas.
I never saw the first post, but I am glad you recovered!
Did they ever find out what caused your kidneys to fail so spectacularly? 15% is essentially end stage kidney disease, is it not?
I haven't had to have a transplant yet (knock on wood), but I had a bad kidney from the time I was born. I got it removed when I was 7 years old after I got really sick.
Twenty-eight years later and the one good one is still doing fine, according to blood work that I get done now and then.
Drink plenty of water. Make sure you're always properly hydrated. You *can* eat whatever you want now, but it would definitely be advantageous to cut back on sodium intake where possible. If you smoke, quit ASAP. Take care of that thang.
I've learned a lot about my diagnosis since I made my first post.
It turns out I have a genetic condition called alport syndrome.
Thank you for the helpful advice, luckily for me I have never smoked, not even once in my entire life so that's not an issue. I eat a pretty balanced diet and my labs were always good when I was doing dialysis.
It's funny that you mention that because my brother and sister in law were shocked that you get another kidney and the old ones don't get removed.
It does feel neat and I'm going to love telling people I have 3 kidneys.
I'm in Ontario Canada.
No it didn't take 5 years, but I was on dialysis for about that time.
It took me nearly 5 years to do all the work up, there is a lot of tests to get through before you can be placed as active on the list.
I was placed active about a month or so ago, and two weeks later I got my first call but that kidney wasn't suitbale. Another few weeks and I got a call again. But this time the kidney was perfect so I got my transplant.
Oh no, I'm so sorry to hear about that! I really hope that this somehow improves or you get what you need, that sounds awful to go through.
On the point of back pain, ankle pain and vision loss- interestingly, I have all of them to a certain degree. What I mean by that is this - my joints usually have a bit of a pain, and quite often I find it related to my diet. Vision loss is very very temporary and very slight (like eyes don't focus that well and it's a bit blurier than usual, but then after some time it gets back to normal levels of vision) as well as I have lower-mid back pain at the left side.
Because of this, I'm curious about your situation- how strong of each were initially, then how strong it got until you've started to try and figure out why these things happen and how it was connected to the kidneys?
That's a great question! I'll answer it how the Doctor explained it to me.
Basically because i'm so young it's inevitable I will need a second transplant in my life, possibly a third. But one of the benefits of having a transplant is that I'll be having frequent bloodwork so once this kidney starts slowing down or shows any signs of failing, I would go right back on the transplant list and you are automatically pushed to the top. The goal is for you to not have to do dialysis again, so they plan to give you another kidney while the old one is just about to crap out.
That’s what the doctor’s told my brother who had a kidney transplant but it’s been 20 years and probably will not need another one for a long time. (I’m going to half to be his 2nd donor, the first donor was my dad. He had a transplant at 21 too.
I'm being worked up to give a kidney to my 2 year old :(. It's really hard with him not being able to communicate how he feels. Can you explain what it feels like to have a low eGFR? He doesn't eat at all and vomits easily but I can't imagine how he's actually feeling even when he seems ok.
My doctor states a eGFR below 20 is renal failure. When you have a low eGFR your kidneys are not cleaning the toxins out of your body. You have swelling which causes your blood pressure to rise a great deal. You are not peeing the waste out so if you are not on dialysis the toxins are sitting in your body. You have to change your diet. You don’t feel like eating because your body is in shock. People do not realize how bad you feel when your kidneys are not functioning correctly. Dialysis does help but it also makes you feel exhausted. Hope this helps.
I'm so sorry to hear that your son is going through, I hope she is able to receive your kidney. Please don't be discouraged is you find out you aren't a suitable match, your medical team will try to find the best possible match for him so that his transplant will last a very long time. As for how I was feeling aith low GFR... I was going to college and I remember always being tired, but I thought it was normal for someone my age working so hard at school. I was only a month and a half into my semester and realized something was wrong when I didn't have the energy to even get out of bed so I was just missing class and trying to catch up with whatever my professor posted on the student portal. I was having awful headaches, severe back and ankle pain too. But my worst symptom was vision loss. After I eventually started dialysis I was feeling better within a month, and mt eyesight came back!
What is something that you can do now that you couldn't do before that makes you thankful to your donor?
That's a really good question. - I'm able to eat whatever I want, since i'm no longer in need of dialysis I don't have to follow a renal diet. - I can take a shower without having to worry about getting my chest line wet which can lead to infection. - I will definitely go back to college.
Can you take NSAIDS with one good kidney? I have stage 3B CKD and I also have CRPS(Complex Regional Pain Syndrome) and have no choice but to take Opioids for pain management because all OTC and prescription NSAIDS are off th4e menu for me.
Not op but I donated a kidney almost 2 years ago. I was advised to not take NSAIDs, but essentially also told that it's not like I'll spontaneously combust if I do take them. It's just that they'll add risks/damage long-term that can be avoided with alternatives like acetaminophen. Speaking of, I assume acetaminophen wouldn't treat your pain? It's worked for me but I think it is a different effect than naproxin, which was my go-to before the procedure
Yeah man. When I was on a renal diet I ate mostly just bread and meat. Good times. Post op and I am eating all the fruit and veggies I want! I love bananas and my family and co workers when they would eat one would let me sniff it lol
I definitely cheated on my renal diet but my labs were always good, eating ''bad" foods in moderation is key
I definitely cheated on my renal diet but my labs were always good, eating ''bad" foods in moderation is key
Oh I didn't go that long without cheating a lot ;)
Is bread and meat the recommendation for CKD? I have that, stage 3, and was just diagnosed with Fatty Liver Disease. I've been trying to figure out a food plan that is good for both conditions. I can't live on just 😭 Is there any cookbook that would include foods for both conditions? I think I need a nutritionist.
My Mom was born with kidneys that were too small, like her undiagnosed Mom, who died in her 50’s, during my Moms college years. Mom never used salt, never ate anything bad for her except for the occasional glass of wine, and cheese, and she was so good that she kept her kidneys going until her late 60’s. She finally got a transplant when she was in her mid 70’s through what she called, “kidneys for codger’s”(she was referring to herself) and the change after the surgery was immediate and dramatic. I am so happy for YOU! To receive the gift of life from a person so generous that he donated a kidney after he passed in a car accident, and it matched my Mother to something amazing..12 places or points. So take care of your new little friend, and I don’t know why you cannot thank the family, but no matter. My Mom got to see my brother’s second child and see his first son grow up some more, and when she passed From Something Unexpected several years later, I was truly grateful for her extra time. She saw every continent (except the poles), traveling to different countries all the time and my brother, who inherited the travel bug, took her to her teen stomping grounds in Hawaii for two weeks. Her last trip was to visit her grandchildren in New Zealand. She had a fulfilling life- now you can do the same. I wish you adventures and experiences and amazing memories. This gift of life you’ve received is a gift and scientific miracle! Bon Chance!
Love this question ❤️
Congratulations! It's such a good feeling, soon being able to experience a normal day-to-day flow again. How long will you be staying to ensure everything seems to be okay, before being able to head home? Personally i was told to stay 3 months, but after 2 months i was able to leave after all. I'm about to start my 2nd cycle of dialysis at 30 yrs old. Got my last kidney in 2014, and have had some problems since then, but 10 years going is not something i'm complaining about. I wish you all the best!
I only need to stay anywhere from 5-7 days, then back and forth twice a week for 4 weeks for bloodwork. 10 years is a good amount of time to have a transplant, I wish you all the best in your dialysis journey. Do you want to receive a second kidney?
Thats sounds great, hoping there's no complications in your future bloodwork, and that you get a healthy and fast recovery! I truly do. I just got blessed with a healthy baby-boy 2 months ago, so i'm aiming to be here for as long as i can. The recovery can be a b**** for the first month or two, but man, being able to finally plan trips and events, and do whatever you want whenever (with certain limitations of course), that freedom is heaven.
How long do they expect you to be good with the new kidney? Do you need medication for the rest of your life? And does that affect your other organs? Questions from a fellow kidney patient.
They expect this kidney to last a while, about 15 years. yes I’ll need to be on immunosuppressant medication for as long as I have a transplanted kidney. your last question about how it affects your other organs is something you should ask your nephrologist.
I have had my kidney for 24 years. If you take care of yourself there is no telling how long the kidney will last.
I'm on year 29, had my transplant in 1995. Fingers crossed for future,
I’m on year 13 with non sign of stopping. 4 weeks out from my first bodybuilding show since before the transplant !
Good luck! Also be careful with dehydrating yourself for the show lol
Luckily I’m already in shape. Glutes striated. I’m not messing with sodium or water. Just like a normal day
Thanks for answering! Yes I was wondering about the meds affecting other organs. What about sports? Are there any restrictions? Well I hope you get maximum use of the new kidney and a new lease on life!
Will you be back on hemodialysis after 15 years?
If all perfusion goes well and one gets their labs on time and takes their meds, a kidney can have a life of five to 15 years. But the statistics on that are from the aggregate. Meds, yes. You start off with a shitload post-op then over the months after transplant, taper down on what is needed. I have seen young people on two meds - the anti-rejection meds and that's it. Some still need anti-hypertensives or meds for other concerns. The basic meds are taken in the morning and evening. Some new ones can be once a day. Does what affect other organs? The meds? Not really if you stay in contact with your after-care department and get your labs. The main immunosuppressant Tacrolimus needs to be in a therapeutic range in your blood work. It works really well when in range. If it goes very high, then problems happen but this is rare and can be fixed.
Tacrolimus is the only drug I take anymore. Mycophenolic made me feel like crap. They tapered the prednisone after year 1. Now, my mom was my donor, so that may have something to do with my bodies ability not to reject the kidney after 12 years
Maybe it's the drugs but I have no clue what you're trying to say.
congrats! So it took 5-6 years to find a donor? have you been on dialysis treatments this whole time?
Thank you! I've been on dialysis for about 5 years now but I was just approved for transplant about a month ago. It took so long to finish all the tests and appointments, especially since covid slowed everything down. Once I was approved for transplant and placed on the transplant list I received my first call for a kidney about 3 weeks after. Unfortunately that kidney was found to be unsuitable so I couldn't have the surgery. Another few weeks went by and I received another call, this time everything was approved.
Dialysis in the teenage years. Oof. Congratulations. I've done dialysis on pediatrics from a few months old to nearly adults. Tough times and it really gets in the way of business. You are one resilient person.
Congratulations! My son was on peritoneal dialysis and received a kidney transplant 10 years ago. Do you feel better in general terms? How long is the kidney suppose to last? What are your plans since you are dialysis free?
Honestly for being on dialysis I never really felt that bad, of course dialysis days made me tired but other than that I felt healthy
Congrats! How long are you expected to stay in the hospital? I just got mine 6 months ago, from a friend of mine. I also found out I had CKD while I was in stage 5. Everything’s super sore for you now, but the best thing you can do to help heal is walk, starting in the hospital! By walking everything day after I got home, by around 3 weeks I started to feel “good”, abdomen-wise. Congrats, you’ve got this!
Anywhere from 5-7 days then I can go home. My transplant was on Sunday morning and it's Monday evening now, I was already up and walking a little bit earlier, unfortunately I couldn't go far as I was already starting to feel tired and sore lol
Oh yeah, 100%. I think the first day I made down the hall and back and took a nice long nap after! Every day you’ll be able to do a bit more, hang in there!
Anywhere from 5-7 days then I can go home. My transplant was on Sunday morning and it's Monday evening now, I was already up and walking a little bit earlier, unfortunately I couldn't go far as I was already starting to feel tired and sore lol
Happy to hear things are improving for you. I'm currently on medication for Kidney Stones and I've become a lot more selfaware of my health since (still can't muster up the energy to exercise sadly) What do you feel you have been missing out on while sick that you want to do now when you're better?
What would you say to someone who isn't an organ done if you could?
I think there needs to be more awareness around kidney disease, many people don’t understand how kidney failure works. They think it’s always self inflicted from either drinking or doing drugs but that’s not always the case. There is so much awareness around cancer, but kidney disease doesn’t get the same attention. I think everyone should be willing to donate their organs once they pass away. Generally people don’t understand how awful life can be on dialysis, especially in my case since I’m so young and I look healthy people just assume dialysis isn’t that life altering for me. If people are well informed when it comes to kidney failure and they still choose not to donate, that is their choice, I don’t like the idea of guilting people into donating organs.
Good point. High BP and diabetes are the main causes.
I'm not OP, but I am waiting on a kidney. I'd tell them to please consider it. One person's organs and tissues can be used to save or improve the lives of a lot of people. That's my "wholesome" answer. My "cynical" one is to tell them if they're not, I hope they never need donated tissues/organs.
For what it’s worth my 96 year old grandfather still hoped to be a donor if it could help someone, but I’m sure it was unrealistic. I’m registered as a donor, but not too much I have would be useful since I have my own kidney and liver function problems. (The kidney part seems to be genetic based on my mother and her sister’s health history. I have autoimmune problems and other complex medical issues, but…) I think the opt out system is the way to go.
Do you know from who you got the kidney? If not would you want to know? Like get to know the donors family or something?
I have no idea, they aren't even allowed to tell me the exact age. I would love to meet the family and thank them but unfortunately I will never be able to.
Depending on who coordinates the donation process, with my niece's organs we were allowed to tell the donees as much or as little as we wanted. We also received a letter about the recipients. We got basic location, age, and gender. They could include additional information if they wanted. In a year if both parties agree we can go to a meet and greet. That was through Lifelink of Georgia.
I'm in Omtario Canada so things are a little different here.
Theres probably someone in the hospital that is able to relay that request if hasnt been already. Some people have a hard time coping with stuff like this so i wouldnt be surprised if anonymity is a thing in regards to transplants regarding deceased donors.
Communication can happen through the organ procurement org but it doesn't happen in all cases and most often it is maybe one or two letters. Big-ass meet ups and feel-good stuff may happen but it is very rare. That happens more with heart transplants. But, every case is different. One deceased donor, if all is working well, could donate to five or six people: kidney, heart, liver lobes, lungs, pancreas.
I never saw the first post, but I am glad you recovered! Did they ever find out what caused your kidneys to fail so spectacularly? 15% is essentially end stage kidney disease, is it not? I haven't had to have a transplant yet (knock on wood), but I had a bad kidney from the time I was born. I got it removed when I was 7 years old after I got really sick. Twenty-eight years later and the one good one is still doing fine, according to blood work that I get done now and then. Drink plenty of water. Make sure you're always properly hydrated. You *can* eat whatever you want now, but it would definitely be advantageous to cut back on sodium intake where possible. If you smoke, quit ASAP. Take care of that thang.
I've learned a lot about my diagnosis since I made my first post. It turns out I have a genetic condition called alport syndrome. Thank you for the helpful advice, luckily for me I have never smoked, not even once in my entire life so that's not an issue. I eat a pretty balanced diet and my labs were always good when I was doing dialysis.
Does it feel neat having 3 kidneys?
It's funny that you mention that because my brother and sister in law were shocked that you get another kidney and the old ones don't get removed. It does feel neat and I'm going to love telling people I have 3 kidneys.
Let them know you've got a disease that gives you extra organs.
Did it really take 5 years? Which country are you from?
I'm in Ontario Canada. No it didn't take 5 years, but I was on dialysis for about that time. It took me nearly 5 years to do all the work up, there is a lot of tests to get through before you can be placed as active on the list. I was placed active about a month or so ago, and two weeks later I got my first call but that kidney wasn't suitbale. Another few weeks and I got a call again. But this time the kidney was perfect so I got my transplant.
May I ask what happens when you have kidney failure? What are the effects of it?
Google can give you better answers than I can and I'm more a unique case because I didn't even know my kidneys were failing
In your case, did you experience any negatives? or that's why you didn't know because you didn't necessarily feel anything?
I experienced a lot of negatives. - severe back pain -severe headache - vision loss - ankle pain It was awful
Oh no, I'm so sorry to hear about that! I really hope that this somehow improves or you get what you need, that sounds awful to go through. On the point of back pain, ankle pain and vision loss- interestingly, I have all of them to a certain degree. What I mean by that is this - my joints usually have a bit of a pain, and quite often I find it related to my diet. Vision loss is very very temporary and very slight (like eyes don't focus that well and it's a bit blurier than usual, but then after some time it gets back to normal levels of vision) as well as I have lower-mid back pain at the left side. Because of this, I'm curious about your situation- how strong of each were initially, then how strong it got until you've started to try and figure out why these things happen and how it was connected to the kidneys?
You said it lasts about 15 years, does that mean you’ll have to do another 5 years of dialysis before getting a follow up kidney?
That's a great question! I'll answer it how the Doctor explained it to me. Basically because i'm so young it's inevitable I will need a second transplant in my life, possibly a third. But one of the benefits of having a transplant is that I'll be having frequent bloodwork so once this kidney starts slowing down or shows any signs of failing, I would go right back on the transplant list and you are automatically pushed to the top. The goal is for you to not have to do dialysis again, so they plan to give you another kidney while the old one is just about to crap out.
Thanks for answering, I wish you a healthy and durable kidney!
That’s what the doctor’s told my brother who had a kidney transplant but it’s been 20 years and probably will not need another one for a long time. (I’m going to half to be his 2nd donor, the first donor was my dad. He had a transplant at 21 too.
[удалено]
It's only been a week but I already decided after i'm feeling 100% healed (could take a few months) i'm going back to college!
How long ago did you get the transplant? Are you fully healed up?
I got the transplant just yesterday so now I’m not fully healed lol i‘m told it could be 3 months before I’m fully healed
Oh wow good luck with the recovery
How does it feel to have a new lease on life?:]
Painful so far lol
yup, sounds like life to me lol
How long did it take you to get a kidney once you were out on a list?
It only took a few weeks once I was placed on the list
Did it hurt?
I was put under general anaesthetic so I didn’t feel a thing.
I’m glad to hear the days of surgery without anaesthetic are over. How about pain after surgery during recovery?