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Why it is important to advocate for yourself
I have been on this journey for many years and have shared most of my experience. I want to share the latest snafu, because it is so infuriating. I went through the transplant evaluation in 2021. Completed all the tests and was told this: My BMI was too high and that on the nuclear test, they found
I have been on this journey for many years and have shared most of my experience. I want to share the latest snafu, because it is so infuriating. I went through the transplant evaluation in 2021. Completed all the tests and was told this: My BMI was too high and that on the nuclear test, they found
Bassetmommer
NKF Ambassador
in
Kidney Disease
1 year ago
grade 5 reflux with a neurogenic bladder
my son (now 8 months old) was diagnosed with a grade 5 reflux along with a neurogenic bladder post his mcu and cystoscopy which were performed when he was almost a month old, after a life threatening episode of sepsis. The reflux situation caused urine to build up in the kidneys, so much so that one
my son (now 8 months old) was diagnosed with a grade 5 reflux along with a neurogenic bladder post his mcu and cystoscopy which were performed when he was almost a month old, after a life threatening episode of sepsis. The reflux situation caused urine to build up in the kidneys, so much so that one
Anxiousmom97
in
Parents of Children with Kidney Disease
1 year ago
HeRO graft
Hi, I’m new onto dialysis which I’ve been getting for the last 2 months or so, I have a femoral line in at the moment but due to get a hero graft, does anyone know much about it or experience of one please. I’m not really sure what to expect. I have seen vascular surgeon who said they will take an artery
Hi, I’m new onto dialysis which I’ve been getting for the last 2 months or so, I have a femoral line in at the moment but due to get a hero graft, does anyone know much about it or experience of one please. I’m not really sure what to expect. I have seen vascular surgeon who said they will take an artery
SpringersRock
in
Kidney Dialysis
1 year ago
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I’m hospital
I’ve been here since Tuesday because I have this uncontrollable shaking/tremors. Happy to say that dialysis here follows protocol but with a liberty cycler. They have run a bunch of tests but no answer. They even did 5 cycles.
I’ve been here since Tuesday because I have this uncontrollable shaking/tremors. Happy to say that dialysis here follows protocol but with a liberty cycler. They have run a bunch of tests but no answer. They even did 5 cycles.
horsie63
in
Kidney Dialysis
1 year ago
liver dialysis
hello Has anyone heard of this new treatment “Liver Dialysis’ apparently cleans your liver out of toxins, improves your bloods? I’m seeing my transplant team for the first time on 9th Aug and apparently I think I’m boarderline if I need a transplant, so was wondering if this treatment would be better
hello Has anyone heard of this new treatment “Liver Dialysis’ apparently cleans your liver out of toxins, improves your bloods? I’m seeing my transplant team for the first time on 9th Aug and apparently I think I’m boarderline if I need a transplant, so was wondering if this treatment would be better
Harriet-sarah
in
British Liver Trust
1 year ago
After 22 years with my transplant and 5 years on stage 3 now just recently at stage 4 really worried terrified!!!
Hi everyone hope you guys are well. Well I'm really worried have mix emotions after 22 years and 5 years on ckd stage 3 I'm recently reach stage 4 . I feel hopeless my gfr was at 28i. Two months at 21 my dr was shocked he was sure it will go back up. Ever since I change jobs where I work at is busy I'm
Hi everyone hope you guys are well. Well I'm really worried have mix emotions after 22 years and 5 years on ckd stage 3 I'm recently reach stage 4 . I feel hopeless my gfr was at 28i. Two months at 21 my dr was shocked he was sure it will go back up. Ever since I change jobs where I work at is busy I'm
jennifer24
in
Kidney Transplant
1 year ago
AAAGGGHHHH
I have been having issues with my fistula arm. My hand has been going numb and I have also had really bad pins and needles. This has been going on, since Christmas. I have been telling the staff at the dialysis unit, nearly every week but they didn't seem bothered. The nurse practitioner diagnosed it
I have been having issues with my fistula arm. My hand has been going numb and I have also had really bad pins and needles. This has been going on, since Christmas. I have been telling the staff at the dialysis unit, nearly every week but they didn't seem bothered. The nurse practitioner diagnosed it
Ziggydoodah
in
Kidney Disease
1 year ago
Garden 15
Good morning fellow sufferers. Reading your news feeds I see many of you have a much higher gfr than me. Not sure if this is encouraging, nor how long it will last, but my gfr was 15 last November. I have not had dialysis, and am on a strict vegan diet. No alcohol. Some exercise but limited due to skeletal
Good morning fellow sufferers. Reading your news feeds I see many of you have a much higher gfr than me. Not sure if this is encouraging, nor how long it will last, but my gfr was 15 last November. I have not had dialysis, and am on a strict vegan diet. No alcohol. Some exercise but limited due to skeletal
ellen3
in
dRTA (distal Renal Tubular Acidosis)
1 year ago
CKD, Fistuala and exercise
I'm 60 and have CKD for around 3.5 years. The medicos thought I'd be on dialysis by now so I have an unused brachiocephalic fistula in left arm. It is just above the elbow crack. The transplant folks wanted me to lose weight. I started Wegovy, go to the YMCA 5 nights a week and eat once a day. I got
I'm 60 and have CKD for around 3.5 years. The medicos thought I'd be on dialysis by now so I have an unused brachiocephalic fistula in left arm. It is just above the elbow crack. The transplant folks wanted me to lose weight. I started Wegovy, go to the YMCA 5 nights a week and eat once a day. I got
barbara55109
in
Kidney Disease
1 year ago
Just getting started in this process.
My good friend is 66 and has had CKF for quite a few years, He is at the #4 stage and holding. He hopes to get a transplant as he won't do dialysis. I'm hoping to be considered as a donor, but don't know anything about the health requirements. My main questions are concerning my obesity and former status
My good friend is 66 and has had CKF for quite a few years, He is at the #4 stage and holding. He hopes to get a transplant as he won't do dialysis. I'm hoping to be considered as a donor, but don't know anything about the health requirements. My main questions are concerning my obesity and former status
kangafan
in
Kidney Donation
1 year ago
Low kt/v score
Ok time for a 6 month update: So after 6 months of PD dialysis, my kt/v score from my 48 hour urine collection, PD sample, and blood test this week came back as 1.43. This was after they increased my volume to 2300ml per exchange, 4 exchanges a night over 10 hours. So I'm still flunking that test. At
Ok time for a 6 month update: So after 6 months of PD dialysis, my kt/v score from my 48 hour urine collection, PD sample, and blood test this week came back as 1.43. This was after they increased my volume to 2300ml per exchange, 4 exchanges a night over 10 hours. So I'm still flunking that test. At
RonZone
in
Kidney Dialysis
1 year ago
when to start dialysis
My GFR just hit 15 and my nephrologist says I can start PD dialysis as soon as I want and it may improve the way I feel. Seems like a huge decision to make as I dont think I feel that bad but who knows. How did people decide when to start dialysis and do you feel better now that you are doing it.
My GFR just hit 15 and my nephrologist says I can start PD dialysis as soon as I want and it may improve the way I feel. Seems like a huge decision to make as I dont think I feel that bad but who knows. How did people decide when to start dialysis and do you feel better now that you are doing it.
Oceanviewed
in
Kidney Dialysis
1 year ago
The Queen is still gonna shine even in the rain
I think it is easy for me to be positive because I am not on dialysis. I think and hope a kidney donor is around the corner. I don't only hope for myself, but I wish more people would donate. I have to remember when I was healthy donating was not even on my radar and I remember one time one of my friends
I think it is easy for me to be positive because I am not on dialysis. I think and hope a kidney donor is around the corner. I don't only hope for myself, but I wish more people would donate. I have to remember when I was healthy donating was not even on my radar and I remember one time one of my friends
HipHopQueen
in
Kidney Dialysis
1 year ago
Edema post transplant
So one year post transplant and what a complete shitshow.It has been nothing but one thing after another.First got covid from hospital when transplanted,then when being treated in hospital for that picked up COP and had 2 weeks in isolation on iv antibiotics 3 times daily.Finally got home suffer horrible
So one year post transplant and what a complete shitshow.It has been nothing but one thing after another.First got covid from hospital when transplanted,then when being treated in hospital for that picked up COP and had 2 weeks in isolation on iv antibiotics 3 times daily.Finally got home suffer horrible
Parkerbarker
in
Kidney Transplant
1 year ago
Dialysis
Hello Just looking for some advice as we are completely stumped over the lack of information my mam has been giving.... My mam starts dialysis 3 times a week starting tomorrow she also has diabetes and we are so confused as to what she can eat after her dialysis the dietician we spoke to was completely
Hello Just looking for some advice as we are completely stumped over the lack of information my mam has been giving.... My mam starts dialysis 3 times a week starting tomorrow she also has diabetes and we are so confused as to what she can eat after her dialysis the dietician we spoke to was completely
Jk2023
in
Kidney Disease
1 year ago
pd dialysis bags
I had an appointment today at my dialysis center for labs. They also wanted to prepare us for hurricane season if we lose power . I found it interesting they said if the room temperature where you store your pd dialysis bag get above 77 they are no good that bacteria can grow in it. And you can’t use
I had an appointment today at my dialysis center for labs. They also wanted to prepare us for hurricane season if we lose power . I found it interesting they said if the room temperature where you store your pd dialysis bag get above 77 they are no good that bacteria can grow in it. And you can’t use
Beachgirl32
in
Kidney Dialysis
1 year ago
Share Your Experience- Babies born with low/no functioning kidney
I am currently 27 weeks pregnant with a baby boy who has one kidney that has an obstruction between the kidney and bladder causing it to swell (hydrephrenosis). When I was 20 weeks my doctor placed a shunt in the kidney to drain and hopefully save that remaining kidney. Unfortunately a few weeks have
I am currently 27 weeks pregnant with a baby boy who has one kidney that has an obstruction between the kidney and bladder causing it to swell (hydrephrenosis). When I was 20 weeks my doctor placed a shunt in the kidney to drain and hopefully save that remaining kidney. Unfortunately a few weeks have
JB0623
in
Parents of Children with Kidney Disease
1 year ago
I just want to talk ..
I am finally posting excuse my poor English it’s not my native language I have been diagnosed with CKD by a coincidencewhen I tested my blood and urin for a routine test befor college, the protein in urine was elevated and after several months I had to do my pre surgery checkups and they found my
I am finally posting excuse my poor English it’s not my native language I have been diagnosed with CKD by a coincidencewhen I tested my blood and urin for a routine test befor college, the protein in urine was elevated and after several months I had to do my pre surgery checkups and they found my
Asmot
in
Kidney Dialysis
1 year ago
Fibrin in peritoneal dialysis drain fluid
Hi all! I’m back again with a concern regarding my dad who started PD in July. Recently he is having some fibrin (white chunky strands) in his drain fluid. I did some research on it and it’s associated with elevated fibrinogen in the plasma which is furthermore associated with bad outcomes in all of
Hi all! I’m back again with a concern regarding my dad who started PD in July. Recently he is having some fibrin (white chunky strands) in his drain fluid. I did some research on it and it’s associated with elevated fibrinogen in the plasma which is furthermore associated with bad outcomes in all of
Marbella17
in
Kidney Disease
1 year ago
What it is like to get an AV fistula, My journey
I am writing this for those who are heading to dialysis and want to know what it is like. As RonZone did with PD, I am talking about home hemodialysis, HHD. My lab numbers are at the point to "get-er done." The first step: I was scheduled for an AV fistula; first-stage left brachiobasilic fistula
I am writing this for those who are heading to dialysis and want to know what it is like. As RonZone did with PD, I am talking about home hemodialysis, HHD. My lab numbers are at the point to "get-er done." The first step: I was scheduled for an AV fistula; first-stage left brachiobasilic fistula
Bassetmommer
NKF Ambassador
in
Kidney Disease
1 year ago
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