JDelve in PKD Charity for Autosomal Dominant PKD a year ago
Good morning all you lovely PKDers out there! I have a quick question directed at any of those of you who are now on Tolvaptan. My 13 year o...
Bunkin in Early CKD Support 4 months ago
Has anyone been prescribed Tolvaptan to delay dialysis? It was just approved last week in the US for PKD. Was wondering how you feel on it o...
JanWellcome in PKD Charity for Autosomal Dominant PKD 2 years ago
Hi. Just been to see my renal specialist yesterday who is amazing, and she is suggesting that would be a good candidate for Tolvaptan, I'm a...
123Ange in PKD Charity for Autosomal Dominant PKD 8 months ago
Right told today i need to get started on Tolvaptan. Got the script and now have the drugs.
I was told to start it this weekend so i can gt ...
Tolvaptan Clinical Trial for ADPKD Patients
cmaxwell78 in Kidney Disease 5 months ago
April could be the month people with ADPKD have been waiting for.
For the last two and a half years, I've been participating in the Phase 3b...
Does one need to pay for Tolvaptan?
v4seem in PKD Charity for Autosomal Dominant PKD 2 years ago
Just been to see my specialist and as my kidney has started to decline have decided to give Tolvaptan a go. Does anyone know if one needs...
FDA Approves Tolvaptan for Treatment of ADPKD
Just in! The FDA approved Tolvaptan for the treatment of ADPKD today. I'm blessed to say I have been in the clinical trial group for this dr...
Midodrine/tolvaptan combo improves ascites control in cirrhosis
kcohen in HFI Connect - Hepatitis 3 years ago
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____paru in PKD Charity for Autosomal Dominant PKD 2 years ago
Technology is so advanced then why there is no medicine for this disease.Don't know what to do?Feeling depressed.
scaredmom in PKD Charity for Autosomal Dominant PKD a year ago
My daughter has been offered to participate in clinical study for pkd. Looking for any thought or cons to her doing this.
I have ADPKD and have been on the TEMPO study since 2007 - anyone out there like me?
bunty_f in PKD Charity for Autosomal Dominant PKD 4 years ago
I don't know how much impact Tolvaptan has made on the size of my kidneys and cysts because I haven't seen the MRI scans since I started but...
ramolawithu29 in PKD Charity for Autosomal Dominant PKD 3 years ago
I'm 38year old pkd patient my nephrologist prescribed me toplavan for slowing down the progression of kidney cysts however I'm very scared a...
I'm so confused about this disease
JoanneManning in PKD Charity for Autosomal Dominant PKD 15 days ago
hello everyone! I am hoping someone can shed some light on this for me. I was diagnosed with ADPKD possible type 2 about 6 months ago. As fa...
Treatment for PKD stage 2 and 3
Mgt8 in PKD Charity for Autosomal Dominant PKD 3 years ago
Good morning all
I have just come across this article and thought it would be of interest to this group....
DeanSamson in PKD Charity for Autosomal Dominant PKD 7 months ago
Just got my results back from my 4th Mri scan in 4 years. It's said the there has been no significant change in my kidneys and are dischargi...
Polyanthem in PKD Charity for Autosomal Dominant PKD 2 months ago
Is anyone on toplaphan. I have been advised to have this and I have concerns on its side effects. Can anyone help.
Is there any new cure or remedies out there ?
poko21 in PKD Charity for Autosomal Dominant PKD 2 years ago
Hi, Im 46 years old and i got PKD and as we know its a genetic condition but recently my GP has revealed i have cysts growing on my liver an...
ADPCKD newly diagnosed anyone else have this??
Ropergirl in Kidney Dialysis 7 months agoPOPULAR
Hi I am new to this site but have just been diagnosed with ADPCKD in both kidneys .. level 2 and I am scared don’t know what to expect down...
Can a TBM patient suddenly become extremely drowsy to the point of requiring mechanical ventilation?
blackhawk in Meningitis Now 4 years ago
My father, 71 years was admitted to the hospital on 6th June following extreme drowsiness to the point where he was unable to swallow water....
Hiding my pkd
AudraB in PKD Charity for Autosomal Dominant PKD a year ago
Hi I am Audra. I was diagnosed with ADPKD in 2013.I've tried to ignore or pretend I'm fine but I can't Amy more with severe headaches, confu...
New link for my blog
JDelve in PKD Charity for Autosomal Dominant PKD 5 months ago
If any of you fellow PKDers are interested I have a new link to my blog.
Hope all you anxious and frightened rec...
athenat in PKD Charity for Autosomal Dominant PKD a month ago
I have been just been diagnosed with PKD. I'm 46 yrs old with 2 kids, 19 and 11 yr old autistic son. My GFR turned up at 52 last month that'...
I've got PKD and my two kidneys are growing lots ( 25 cm each )
crisgi in Early CKD Support 6 years ago
They are starting d to be very painful some times . and because i suffer as well from IBS its more complicated . The question is : If you go...
I am still emotionally destroyed after my Dx, any tips?
Theskewer in PKD Charity for Autosomal Dominant PKD 5 months ago
I was diagnosed back in December during and ultrasound for something else. Now I have more information since then. My eGFR is 100, m...
PKD how many types are there?
LADscape in PKD Charity for Autosomal Dominant PKD 7 months ago
I have read that PKD is hereditary. My husband has PKD but nobody else in his family has the condition. They were tested as soon as he was d...
Bibabi in Early CKD Support 8 months ago
Hello to everyone,
I am a new to this I would like to ask is there a somebody who has PKD?
I am 48 creatinine level 102 and my kidney works 5...
TJV123 in PKD Charity for Autosomal Dominant PKD a year ago
Hi, My mother passed away from PLD at the age of 63. She was 4'11\" AND 110 pounds. The last year before passing away she looked 7 months pr...
My name is Rob from Florida. I appreciate all of you.
rcoffino in Early CKD Support 10 months agoPOPULAR
I currently have a gfr of 18 which just 11 months ago was between 29 and 32. I have heart disease and diabetes as well. I am 56 years old an...
Help with CKD 3
Briffa in Early CKD Support 8 months ago
I have ckd3. Big shock on a routine trip to docs. Had high BP since my twenties My GFR dropped to 41. Lost 3 stone and now hardly drink alco...
I am a 47 female with PKD and my kidneys are working at 35%. I struggle on a daily basis with tiredness, fatigued, headaches, etc.
belindascott in PKD Charity for Autosomal Dominant PKD 4 years ago
I work part-time but I am struggling to work. I don't sleep properly, my legs hurt, I have nausea/sickness sometimes, I struggle with eatin...
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