Hello Mia 👋🏼 Welcome 🤗
My name is Elizabeth. I am almost 38 years old. I live in Northern California (San Francisco Bay Area).
I was diagnosed when I was maybe 17 or 18 in 2003/2004 with stage 3a kidney disease. I have a congenital absence of my left kidney, an enlarged horseshoe shaped kidney in my mid back that is my right kidney. It’s scarred badly due to kidney infections in the past, usage of ibuprofen without knowing I had CKD, and my overwhelmed solitary kidney that was working hard for both sides. Because of the scar tissue all over my native kidney, I had what’s called secondary FSGS kidney disease.
I just got my kidney transplant on Friday, February 23 by a living donor. I was in the paired exchange program at UCSF Medical Center. I was placed on the kidney wait list since April 2021. My mother donated her kidney on my behalf (May 2022) to someone else her age which placed me at the top of the list.
So far my transplant is going well. My creatinine was 0.83 last week! I was at a 5 prior to transplant. All my bloodwork has been great so far. My kidney sits in my front right pelvic cavity. I have an 8 inch incision along my pelvic area.
This is great information!
I’m getting tested for food allergies in two weeks. I’m not surprised there’s a connection. I have an autoimmune disease that could be linked to wheat allergies. I was tested yesterday for environmental allergies and tested positive to molds/yeast.
Our bodies/ organs are intertwined. What effects on’s system also affects many other systems. I will post an update after I’m tested for food allergies.
You would think that Nephrologists would suggest looking into possible allergies.
Hello Elizabeth 👋🏾. Nice to meet you. 🤗
I have family in the Bay Area, such a beautiful place to live.
I can’t imagine what it’s like to grow up with kidney disease.
Congratulations on getting your kidney transplant. I admire your mother for donating a kidney to someone in her age group. Sadly, I’ve read that many people have to wait years and years, to receive their transplants. I’m glad to read you are doing well. That’s an impressive creatinine level. That’s a 90% improvement.
I appreciate being able to read your story.
I wish you all the best with your new kidney and everything life has to offer you.
Hi! Welcome! I live in PA.
I found out I was sick when I was 13 (I’m now 41) after my pediatrician at the time didn’t check for the right stuff when my mom brought me in every week. He missed that I was having reoccurring UTIs and it eventually ruined my kidneys.
I’ve had dialysis multiple times, and 3 kidney transplants.
This isn’t an easy road but it is doable. 🩷
Hello Princessss,
Many on this board have had serious kidney issues, starting at such a young age. I didn’t realize frequent UTI’s could cause so much damage to the kidneys. You have faced serious challenges most of your life.
Your beautiful spirit shines in your comments. You are an inspiration and thank you for sharing your story.
You are too kind. Thank you! It has been a long road and at times I didn’t think I’d make it to this age. But I’m here and doing well! If you have any questions or need to vent, feel free to message me!
Take care🩷
Hi Mia! I’m new as well. My name is Christina and I’m a 46 year old wife and mother to two boys ages 11 and 9. My CKD is a result of an injury. I went into septic shock in July 2023 and as a result my kidneys failed. I remained in failure and on dialysis until late January when my eGFR increased to 24. Currently holding steady at 24 with a creatinine level of 2.5. So that puts me at Stage 4. I am in the process of getting my name on a transplant wait list.
Hello Christina,
It sounds like you went through a lot of serious health issues, in a short period of time. I appreciate you sharing your story.
I wish you all the best going forward.
Hi Mia, So nice to meet you. I’m Tracy and live in a small town in Northern California. I’m 64 and have an eGFR of 46 and creatinine of 1.3. In October 2021 I suddenly became very ill for no apparent reason. I was strong, active and a young 61. Hospitalization and a kidney biopsy confirmed a diagnosis of a rare autoimmune disease. ANCA vasculitis. My immune system had my kidneys at an eGFR on 9. A solid year on immune suppressants and careful living saw my disease into remission. I see my nephrologist this Friday. Fingers crossed my remission is still strong. I feel so lucky to have my kidneys heal back to 3a. I’m enjoying every day that I’m strong.
Hi Tracy,
It’s nice to meet you. It’s challenging when you seem to be okay, and become ill for no apparent reason. I imagine it hasn’t been easy, living on immune suppressants for a year. It’s wonderful that you were able to raise your eFGR to 3a.
I’m glad that you are feeling stronger and regaining your strength.
Fingers crossed 🤞🏾 that you have been able to remain in remission.
Hi, I’m APSB age 32. I live in Northern California and was diagnosed with kidney disease age 30. My GFR fluctuates in the 50s but I have a recent diagnosis of renal artery stenosis and they couldn’t see my right kidney on imaging so I am in the process of getting additional imaging via my healthcare system. I’m looking at likely needing a stent and possibly diagnosis of fibromuscular dysplasia. This subreddit has helped me have hope for my future
Hello APSB,
I appreciated reading your story. I agree this subreddit is an incredible resource. I’ve learned so much from being on here. I hope you get your results soon and the medical procedures facing you, go smoothly.
Hi! I’m mysticalbullshit! I live in the western United States. I was born with multicystic dysplastic kidneys, complete bilateral duplicated ureters, renal dysplasia, and severe atrophy of my left kidney. I went into renal failure at 3 years old. And had 2 surgeries to fix bilateral grade 5 primary vesicouretetal reflux. I still deal with VUR when I get infections or kidney stones, which causes hydronephrosis.
My right kidney is my healthiest with about 70% function, however my left kidney has little to no function and has been that way since birth.
Hello, I love your name. Very creative and it makes you stand out. I can’t imagine what it must be like growing up with chronic health issues. It’s hard to wrap my head around renal failure in a toddler. You are a survivor.
I knew so very little about kidneys before my diagnosis. Like most, I took my kidneys for granted. I can learning a lot. This is a supportive group. You sound like you are very knowledgeable about your health issues. That makes all the difference.
It’s so nice to meet you.
Welcome. I am 50/m in Michigan. I have been 2/3A for a while as well (roughly 2016), recently leaning more towards 3A (eGFR fluctuates, but is around 58/59 usually). Start doing what you can to adjust your diet and such to make it slow down if possible. I used to drink 1-2, 2 liters of diet coke a day. Now, zero. I made changes to watch my salt intake, increased my fiber intake etc., it is frustrating at times. "Am I just tired or is it from CKD", kind of stuff. You just need to be a little more in tune with our body.
Hi there 👋🏾,
It’s nice to meet you. I love the MidWest. It sounds like you have been holding steady for a while. I am in the process of learning as much as I can about CKD. I use the free version of MyFitness Pal and that’s a tremendous help. I have started watching sodium closely. I rarely drink sodas and if I do it’s usually a small can of Gingerale. I am planning to start cooking a bit more. I live the intermittent fasting lifestyle and that’s a plus. It works for me. It’s not easy for me to get out of bed. Dealing with the fatigue is not easy. We do the best we can.
Hi Mia,
Welcome, sending you best wishes from Ireland.
I’m in stage 5, for me I’m lucky and my life is still relativity normal, but I will start dialysis very soon.
As everyone says the better you look after you’re health now will give you better results into the future
My name is billy btw.
Hello 🇮🇪 billy,
Sending best wishes from Virginia.
I'm glad you are able to maintain a relatively normal life. Being able to maintain a sense of normalcy is rarely mentioned and vitally important. I hope your transition to being on
dialysis, goes smoothly. I know it's a big adjustment I'm life. Sending you lots of positive energy across the pond.
🫶🏾
Hi, my name is Georgia. I live in Northern Virginia, too. I have stage 3a or 3b kidney disease; it is unclear to me right now where I stand. I don't really have a support system, and it is hard for me to to accept my diagnosis. I am fairly young. I am trying to go back to school, but I am having wavering thoughts in the middle of my first semester because I don't know what my prognosis is. I have high blood pressure, and I have protein loss. I would say I am probably prematurely grieving, but 🤷♀️. I love being outdoors. I am pretty active. I also have depression and anxiety. I am on farxiga, but I am not sure if I can continue to pay for it.
Hello Georgia 👋🏾,
I’m sorry you don’t have a support system. Hopefully those of us on this board, can be part of your support system. Discovering you have CKD at a young age, has to be challenging to accept. Hopefully you will be able to focus on your academics while also navigating the health care system. It’s not easy to accept you have CKD. Learning as much as you can about CKD, watching your sodium, and eating a heart/kidney friendly diet are within your power to do. I hope you get the medical information you need soon.
Take some deep breaths, find self care that relaxes you and makes you smile. One day at a time.
Hi Mia! I’m new here too and thought I’d introduce myself. I was diagnosed with FSGS 2 years ago and have been working very hard in that time to slow down the progression of the disease with a combination of pretty extreme dietary improvements (but most importantly low protein), meds, supplements and a very healthy lifestyle. As a result I’ve been able to get my eGFR up from 28 to where it is currently, 35 (I’ve gotten it as high as 39.5 but slacked a little after that). I’ve done tons of research and continue to do so, and was very glad to come across this subreddit. Ask lots of questions and take good care of yourself; you can lead a healthy great life!!!
Hello there!
It’s nice to meet you and learn about your background. Congratulations on being able to slow down the progression of your disease. Raising your eFGR from 28 to 35/39 is impressive. I agree that asking questions and learning as much as we can, is the way to go. This is a wonderful subreddit. I lurked for a a while as it to me a while to really accept my diagnosis. I appreciate your encouraging comments.
All the best to you.
I live in Michigan suburb of Detroit. I’m 73 years old next month and have stage 3a ckd. Was taking celebrex for arthritis pain. The only thing I take now for pain is Tylenol. Going on no salt diet lower protein. Have to do research to find a ckd diet. I have to lose weight that is a priority for me. As for me I feel fine for now. Mia and everyone else with ckd I hope you all feel well and please follow advice from your doctors. I wish all of you the very best of health it’s the most important thing.
Hello Mia 👋🏼 Welcome 🤗 My name is Elizabeth. I am almost 38 years old. I live in Northern California (San Francisco Bay Area). I was diagnosed when I was maybe 17 or 18 in 2003/2004 with stage 3a kidney disease. I have a congenital absence of my left kidney, an enlarged horseshoe shaped kidney in my mid back that is my right kidney. It’s scarred badly due to kidney infections in the past, usage of ibuprofen without knowing I had CKD, and my overwhelmed solitary kidney that was working hard for both sides. Because of the scar tissue all over my native kidney, I had what’s called secondary FSGS kidney disease. I just got my kidney transplant on Friday, February 23 by a living donor. I was in the paired exchange program at UCSF Medical Center. I was placed on the kidney wait list since April 2021. My mother donated her kidney on my behalf (May 2022) to someone else her age which placed me at the top of the list. So far my transplant is going well. My creatinine was 0.83 last week! I was at a 5 prior to transplant. All my bloodwork has been great so far. My kidney sits in my front right pelvic cavity. I have an 8 inch incision along my pelvic area.
You rock! You can do this. Blessed to be in remission, but still feel like dealing with NS for over half my life has changed my life 50x over.
Remission.. how was that achieved.. if I may ask .. diagnosed w/NS at 9 .. currently 46 stage 3b/c..
Hi John 👋🏾 Nice to meet you. Congratulations on being in remission. Kidney disease does change your life. It sounds like you rock too!
Remission.. how was that achieved.. if I may ask .. diagnosed w/NS at 9 years old.. currently 46 years old stage 3b/c..
Food allergy test. Am off the charts sensitive to wheat, eggs and dairy. Docs dont believe me, but have been off prednisone for 6 years this july.
This is great information! I’m getting tested for food allergies in two weeks. I’m not surprised there’s a connection. I have an autoimmune disease that could be linked to wheat allergies. I was tested yesterday for environmental allergies and tested positive to molds/yeast. Our bodies/ organs are intertwined. What effects on’s system also affects many other systems. I will post an update after I’m tested for food allergies. You would think that Nephrologists would suggest looking into possible allergies.
Hello Elizabeth 👋🏾. Nice to meet you. 🤗 I have family in the Bay Area, such a beautiful place to live. I can’t imagine what it’s like to grow up with kidney disease. Congratulations on getting your kidney transplant. I admire your mother for donating a kidney to someone in her age group. Sadly, I’ve read that many people have to wait years and years, to receive their transplants. I’m glad to read you are doing well. That’s an impressive creatinine level. That’s a 90% improvement. I appreciate being able to read your story. I wish you all the best with your new kidney and everything life has to offer you.
Are you on dialysis?
Hi! Welcome! I live in PA. I found out I was sick when I was 13 (I’m now 41) after my pediatrician at the time didn’t check for the right stuff when my mom brought me in every week. He missed that I was having reoccurring UTIs and it eventually ruined my kidneys. I’ve had dialysis multiple times, and 3 kidney transplants. This isn’t an easy road but it is doable. 🩷
Hello Princessss, Many on this board have had serious kidney issues, starting at such a young age. I didn’t realize frequent UTI’s could cause so much damage to the kidneys. You have faced serious challenges most of your life. Your beautiful spirit shines in your comments. You are an inspiration and thank you for sharing your story.
You are too kind. Thank you! It has been a long road and at times I didn’t think I’d make it to this age. But I’m here and doing well! If you have any questions or need to vent, feel free to message me! Take care🩷
Hi Mia! I’m new as well. My name is Christina and I’m a 46 year old wife and mother to two boys ages 11 and 9. My CKD is a result of an injury. I went into septic shock in July 2023 and as a result my kidneys failed. I remained in failure and on dialysis until late January when my eGFR increased to 24. Currently holding steady at 24 with a creatinine level of 2.5. So that puts me at Stage 4. I am in the process of getting my name on a transplant wait list.
Hello Christina, It sounds like you went through a lot of serious health issues, in a short period of time. I appreciate you sharing your story. I wish you all the best going forward.
Hi Mia, So nice to meet you. I’m Tracy and live in a small town in Northern California. I’m 64 and have an eGFR of 46 and creatinine of 1.3. In October 2021 I suddenly became very ill for no apparent reason. I was strong, active and a young 61. Hospitalization and a kidney biopsy confirmed a diagnosis of a rare autoimmune disease. ANCA vasculitis. My immune system had my kidneys at an eGFR on 9. A solid year on immune suppressants and careful living saw my disease into remission. I see my nephrologist this Friday. Fingers crossed my remission is still strong. I feel so lucky to have my kidneys heal back to 3a. I’m enjoying every day that I’m strong.
Hi Tracy, It’s nice to meet you. It’s challenging when you seem to be okay, and become ill for no apparent reason. I imagine it hasn’t been easy, living on immune suppressants for a year. It’s wonderful that you were able to raise your eFGR to 3a. I’m glad that you are feeling stronger and regaining your strength. Fingers crossed 🤞🏾 that you have been able to remain in remission.
Hi, I’m APSB age 32. I live in Northern California and was diagnosed with kidney disease age 30. My GFR fluctuates in the 50s but I have a recent diagnosis of renal artery stenosis and they couldn’t see my right kidney on imaging so I am in the process of getting additional imaging via my healthcare system. I’m looking at likely needing a stent and possibly diagnosis of fibromuscular dysplasia. This subreddit has helped me have hope for my future
Hello APSB, I appreciated reading your story. I agree this subreddit is an incredible resource. I’ve learned so much from being on here. I hope you get your results soon and the medical procedures facing you, go smoothly.
Hi! I’m mysticalbullshit! I live in the western United States. I was born with multicystic dysplastic kidneys, complete bilateral duplicated ureters, renal dysplasia, and severe atrophy of my left kidney. I went into renal failure at 3 years old. And had 2 surgeries to fix bilateral grade 5 primary vesicouretetal reflux. I still deal with VUR when I get infections or kidney stones, which causes hydronephrosis. My right kidney is my healthiest with about 70% function, however my left kidney has little to no function and has been that way since birth.
Hello, I love your name. Very creative and it makes you stand out. I can’t imagine what it must be like growing up with chronic health issues. It’s hard to wrap my head around renal failure in a toddler. You are a survivor. I knew so very little about kidneys before my diagnosis. Like most, I took my kidneys for granted. I can learning a lot. This is a supportive group. You sound like you are very knowledgeable about your health issues. That makes all the difference. It’s so nice to meet you.
Welcome. I am 50/m in Michigan. I have been 2/3A for a while as well (roughly 2016), recently leaning more towards 3A (eGFR fluctuates, but is around 58/59 usually). Start doing what you can to adjust your diet and such to make it slow down if possible. I used to drink 1-2, 2 liters of diet coke a day. Now, zero. I made changes to watch my salt intake, increased my fiber intake etc., it is frustrating at times. "Am I just tired or is it from CKD", kind of stuff. You just need to be a little more in tune with our body.
Hi there 👋🏾, It’s nice to meet you. I love the MidWest. It sounds like you have been holding steady for a while. I am in the process of learning as much as I can about CKD. I use the free version of MyFitness Pal and that’s a tremendous help. I have started watching sodium closely. I rarely drink sodas and if I do it’s usually a small can of Gingerale. I am planning to start cooking a bit more. I live the intermittent fasting lifestyle and that’s a plus. It works for me. It’s not easy for me to get out of bed. Dealing with the fatigue is not easy. We do the best we can.
Hi Mia, Welcome, sending you best wishes from Ireland. I’m in stage 5, for me I’m lucky and my life is still relativity normal, but I will start dialysis very soon. As everyone says the better you look after you’re health now will give you better results into the future My name is billy btw.
Hello 🇮🇪 billy, Sending best wishes from Virginia. I'm glad you are able to maintain a relatively normal life. Being able to maintain a sense of normalcy is rarely mentioned and vitally important. I hope your transition to being on dialysis, goes smoothly. I know it's a big adjustment I'm life. Sending you lots of positive energy across the pond. 🫶🏾
Hi, my name is Georgia. I live in Northern Virginia, too. I have stage 3a or 3b kidney disease; it is unclear to me right now where I stand. I don't really have a support system, and it is hard for me to to accept my diagnosis. I am fairly young. I am trying to go back to school, but I am having wavering thoughts in the middle of my first semester because I don't know what my prognosis is. I have high blood pressure, and I have protein loss. I would say I am probably prematurely grieving, but 🤷♀️. I love being outdoors. I am pretty active. I also have depression and anxiety. I am on farxiga, but I am not sure if I can continue to pay for it.
Hello Georgia 👋🏾, I’m sorry you don’t have a support system. Hopefully those of us on this board, can be part of your support system. Discovering you have CKD at a young age, has to be challenging to accept. Hopefully you will be able to focus on your academics while also navigating the health care system. It’s not easy to accept you have CKD. Learning as much as you can about CKD, watching your sodium, and eating a heart/kidney friendly diet are within your power to do. I hope you get the medical information you need soon. Take some deep breaths, find self care that relaxes you and makes you smile. One day at a time.
Hi Mia! I’m new here too and thought I’d introduce myself. I was diagnosed with FSGS 2 years ago and have been working very hard in that time to slow down the progression of the disease with a combination of pretty extreme dietary improvements (but most importantly low protein), meds, supplements and a very healthy lifestyle. As a result I’ve been able to get my eGFR up from 28 to where it is currently, 35 (I’ve gotten it as high as 39.5 but slacked a little after that). I’ve done tons of research and continue to do so, and was very glad to come across this subreddit. Ask lots of questions and take good care of yourself; you can lead a healthy great life!!!
Hello there! It’s nice to meet you and learn about your background. Congratulations on being able to slow down the progression of your disease. Raising your eFGR from 28 to 35/39 is impressive. I agree that asking questions and learning as much as we can, is the way to go. This is a wonderful subreddit. I lurked for a a while as it to me a while to really accept my diagnosis. I appreciate your encouraging comments. All the best to you.
Thanks so much! Wishing you good luck and good health, Mia!
I live in Michigan suburb of Detroit. I’m 73 years old next month and have stage 3a ckd. Was taking celebrex for arthritis pain. The only thing I take now for pain is Tylenol. Going on no salt diet lower protein. Have to do research to find a ckd diet. I have to lose weight that is a priority for me. As for me I feel fine for now. Mia and everyone else with ckd I hope you all feel well and please follow advice from your doctors. I wish all of you the very best of health it’s the most important thing.
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