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interesting tweet on Lu-177
cycle 17 of Lu-177 in Australia and still benefitting! Like the socks too! Normal bloods and renal function too wow shows ‘one size fits all’ decision making on treatment protocols has to be challenged imo
cycle 17 of Lu-177 in Australia and still benefitting! Like the socks too! Normal bloods and renal function too wow shows ‘one size fits all’ decision making on treatment protocols has to be challenged imo
Brysonal
in
Fight Prostate Cancer
1 year ago
Red face / flushing. Possible rosacea
Hi I am 200 plus days post stem cell transplant. Since then I get flushed very easily. I have suffered with this in the past and still have it now but maybe worse I take a few medications still which may or may not help and wondered on any good way of controlling it my consultant has recommended me
Hi I am 200 plus days post stem cell transplant. Since then I get flushed very easily. I have suffered with this in the past and still have it now but maybe worse I take a few medications still which may or may not help and wondered on any good way of controlling it my consultant has recommended me
Kraskie1915
in
CLL Support
1 year ago
4-th line of chemo
Hello brave ladies. I would appreciate your experience concerning chemo protocol: Gemzar+ Oxaliplatine. Unefortunately and despite the inhibitor PARP (NIraparib) taken from 7 weeks now, my marker goes up rapidly and I will be facing the 4-th round of chemo called "gemox". At the same time I've developped
Hello brave ladies. I would appreciate your experience concerning chemo protocol: Gemzar+ Oxaliplatine. Unefortunately and despite the inhibitor PARP (NIraparib) taken from 7 weeks now, my marker goes up rapidly and I will be facing the 4-th round of chemo called "gemox". At the same time I've developped
Reksio77
in
My Ovacome
1 year ago
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Preventative Antibiotics
Hi all, I've been a GCA patient since AUG 2022 and am currently on 40 MG PRED (down from 60, then 50). My rheumy is concerned about my immune system and has prescribed a preventative course of atovaquone to protect me from pneumonia -- even though I've recently had the pneumonia vaccine, He prescribed
Hi all, I've been a GCA patient since AUG 2022 and am currently on 40 MG PRED (down from 60, then 50). My rheumy is concerned about my immune system and has prescribed a preventative course of atovaquone to protect me from pneumonia -- even though I've recently had the pneumonia vaccine, He prescribed
montebello
in
PMRGCAuk
1 year ago
What do I ask kidney Dr. on next appointment ?
HI I see my kidney DR. again this Friday Jan 12 th. I had the lab work last Friday , I read the results on my chart on line today. I see many flags in the tests . I need to be asking questons what they all mean. My hemoglobin came up to 11,5 it is flaged ,creatinine external 37 mg . creatinine
HI I see my kidney DR. again this Friday Jan 12 th. I had the lab work last Friday , I read the results on my chart on line today. I see many flags in the tests . I need to be asking questons what they all mean. My hemoglobin came up to 11,5 it is flaged ,creatinine external 37 mg . creatinine
MSTAUF
in
Early CKD Support
1 year ago
Vaccinations for covid19 done after Transplant: if you got covid19, what were symptoms and outcome
Our nephrologist at
kidney
transplant
center tells us to continue what we are doing now. We have not done anything 'normal' for so long. THis is not living.
Our nephrologist at
kidney
transplant
center tells us to continue what we are doing now. We have not done anything 'normal' for so long. THis is not living.
Gardner-NY
in
Kidney Transplant
2 years ago
Catheter
good day to all you wonderful ladies I hope the sun is shining on you all My question is I have been having ureteric stents for the past 5yrs two weeks ago I had my stent changed to a Memokath stent (metal) others were plastic the metal stent lasts up to 10yrs where as the plastic need changing every
good day to all you wonderful ladies I hope the sun is shining on you all My question is I have been having ureteric stents for the past 5yrs two weeks ago I had my stent changed to a Memokath stent (metal) others were plastic the metal stent lasts up to 10yrs where as the plastic need changing every
1946val
in
My Ovacome
1 year ago
stopping mycophenalate when you are unwell?
hi all i’ve got lupus nephritis, sle and lupus profundus. I’ve been advised to stop mycophenalate by rheum for 7 days due to gastro problem. I should also have Antonio but they are out of stock at the moment, Stopping mycophenalate feels very scary as have never done this. Have you ever had to stop mycophenalate
hi all i’ve got lupus nephritis, sle and lupus profundus. I’ve been advised to stop mycophenalate by rheum for 7 days due to gastro problem. I should also have Antonio but they are out of stock at the moment, Stopping mycophenalate feels very scary as have never done this. Have you ever had to stop mycophenalate
Andfiona
in
LUPUS UK
1 year ago
Lee75glom
I am 75 and the
transplant
team will not consider a deceased
kidney
. So I am searching for a live donor. I have 2 people I know who are being evaluated. I am awaiting approval of my story on National Kidney Registry.
I am 75 and the
transplant
team will not consider a deceased
kidney
. So I am searching for a live donor. I have 2 people I know who are being evaluated. I am awaiting approval of my story on National Kidney Registry.
Lee75glom
in
Kidney Disease
6 months ago
Looking for other mommas!
My son received a
kidney
transplant
in February. Since then he has had such terrible awful behavior, and I am more than burned out. Any other mommas out there with any experience/advice!?
My son received a
kidney
transplant
in February. Since then he has had such terrible awful behavior, and I am more than burned out. Any other mommas out there with any experience/advice!?
Kdown212
in
Kidney Transplant
2 years ago
Life beyond Myelofibrosis
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
Scaredy_cat
in
MPN Voice
1 year ago
introducing myself...
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
jmcasbar
in
Leukaemia CARE
1 year ago
Is there anything I can take to lower antibodies
hi everyone, is there a way that I can lower my antibodies? Got my results back for kidney doctor (nephrologist) , all my bloods came back better GFR of 85 (so she was happy with that), and scan was good, but she said my antibodies were high which I knew eBay from my thyroid l. So she said she
hi everyone, is there a way that I can lower my antibodies? Got my results back for kidney doctor (nephrologist) , all my bloods came back better GFR of 85 (so she was happy with that), and scan was good, but she said my antibodies were high which I knew eBay from my thyroid l. So she said she
Thyroid36
in
Thyroid UK
1 year ago
Urine Calcium Test tips?
As my GP has me down as a hypochondriac malingerer I need some evidence to force testing of calcium properly. I can’t afford a £150 6 hour round trip London clinic test so some internet research led me to a £25 set of 10 dipsticks. I’m ready for the ‘waste of time’ responses and see an endo responses
As my GP has me down as a hypochondriac malingerer I need some evidence to force testing of calcium properly. I can’t afford a £150 6 hour round trip London clinic test so some internet research led me to a £25 set of 10 dipsticks. I’m ready for the ‘waste of time’ responses and see an endo responses
Regenallotment
in
Thyroid UK
1 year ago
Scared
I’ve been feeling a bit rubbish very tired ,had some tests showing elevated ALT ranging between 47 and 76 this year also raised ferritin around 300 . Diagnosed by this and a fibroscan showed f4 fibrosis /early Cirrosis and fatty liver disease . Awaiting full bloods but I know 30 years ago they saw
I’ve been feeling a bit rubbish very tired ,had some tests showing elevated ALT ranging between 47 and 76 this year also raised ferritin around 300 . Diagnosed by this and a fibroscan showed f4 fibrosis /early Cirrosis and fatty liver disease . Awaiting full bloods but I know 30 years ago they saw
Kikidee08
in
British Liver Trust
1 year ago
undecided should I ask for a second opinion
March 22 had surgery to remove nodules in pelvis area.of first diagnosed September 2013 surgery and chemo. This is treated as a recurrence. At the same time as recurrence CT showed mass on left kidney by urethra described now as chronic kidney disease. . As gynae department have the lead I have lost
March 22 had surgery to remove nodules in pelvis area.of first diagnosed September 2013 surgery and chemo. This is treated as a recurrence. At the same time as recurrence CT showed mass on left kidney by urethra described now as chronic kidney disease. . As gynae department have the lead I have lost
Deesales
in
My Ovacome
1 year ago
I Feel like I should be grateful to be on the waiting list for a new liver. But I really don’t feel grateful to towards the kind doctors.
I hate the way I feel about the thought of a new liver transplant. I have made it know to doctors about my feeling towards a new liver transplant. I feel great at the moment and I only on one type of tablet a day. For my liver condition. After I have a new liver transplant I will be on 27 different
I hate the way I feel about the thought of a new liver transplant. I have made it know to doctors about my feeling towards a new liver transplant. I feel great at the moment and I only on one type of tablet a day. For my liver condition. After I have a new liver transplant I will be on 27 different
LucyBarrett
in
British Liver Trust
1 year ago
I really don’t want a liver transplant but do not know how to get of the list for good.
I really don’t want a liver transplant. Last year in December I was out on the liver transplant list. I got called in within less then a week after being put on the transplant list. 14th December 2021 to be more precise. But it never happened. And just felt the whole excise was a trial run. I been attending
I really don’t want a liver transplant. Last year in December I was out on the liver transplant list. I got called in within less then a week after being put on the transplant list. 14th December 2021 to be more precise. But it never happened. And just felt the whole excise was a trial run. I been attending
LucyBarrett
in
British Liver Trust
1 year ago
What do you do and what support do you get if you really don’t want a liver transplant
I really don’t want a liver transplant. Last year in December I was out on the liver transplant list. I got called in within less then a week after being put on the transplant list. 14th December 2021 to be more precise. But it never happened. And just felt the whole excise was a trial run. I been attending
I really don’t want a liver transplant. Last year in December I was out on the liver transplant list. I got called in within less then a week after being put on the transplant list. 14th December 2021 to be more precise. But it never happened. And just felt the whole excise was a trial run. I been attending
LucyBarrett
in
British Liver Trust
1 year ago
I would like to build a website to help people on dialysis. But since there are so many factors to consider, I'm hoping to get insights
What kind of website do you think will be most beneficial in helping people on dialysis? a social website that people can connect and share their experience online? maybe share information to better educate patients? Perhaps a website that allows people to share their feelings? pain, frustration? Please
What kind of website do you think will be most beneficial in helping people on dialysis? a social website that people can connect and share their experience online? maybe share information to better educate patients? Perhaps a website that allows people to share their feelings? pain, frustration? Please
mambata
in
Kidney Dialysis
1 year ago
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