I have PLD. Found out last June 2021. Our family Dads side is riddled with it. Although he's skinny & doesn't have problems with his PLD! My tummy is huge. But so far (age 52) I get very few other problems with it. Occasional acid indigestion which some Renee nips in the bud. I was a size 10 clothing until I turned 40, that's the worst bit for me, I miss being slim! I went through menopause age 41, & thought that's why my tummy was getting bigger. Calorie counting didn't help. Then I would get gallstone symptoms mid 40's, when I ate fatty food. GP wouldn't send for a scan, said if I had PLD they don't do anything anyway, just said avoid fatty food. June 2021 I had a renal ultrasound for something else & she couldn't see my right kidney at all, as my liver covers it haha she said my liver is full of cysts. I just rolled my eyes, didn't surprise me, always kind of expected it. I was sent to Hepatologist in Jan this year, she booked a CT scan with contrast. Hepatologist wrote & confirmed PLD, & some Diverticulosis. No PKD. None of the family have PKD with PLD. Not back to see Hepatologist until next Feb, so over a year since I last saw her.
My father have PLD, he is 66 and liver has captured entire abdomen and putting pressure on intestine, lungs and bladder, now his legs started getting swellings.
I have been told to not eat this and that, by my GP. When I said I LOVE veggies she was disbelieving! Last night I ate a whole cauliflower and she was stunned! I don't eat pasta or pastry as its bad for me. I eat only once/day as tummy too small. I ensure it's a good meal. This disease must be HARD for these dear people. I have had 3 children. Now 61. I MAKE myself walk my dog. I will NEVER have a transplant because I have lived a life and am happy. Ready to die any day. I will go into a trial to help others. I have had sweats since my scan!! ++ pain. I guess it was a burst one, as the scanner REALLY hurt me. No probs, they have to LOOK!
I was diagnosed PLD. 2 weeks ago I had a scan with a probe and it has caused me pain ever since. My kidneys are fine, it seems. It's no fun having this as you feel pregnant all the time. With a head out to the left! I stopped wearing a bra years ago. I am 61 and still able and ready, walk my dog etc. I feel SO SORRY for people with this. It feels like your abdomen is ALL! It bloody hurts! Nobody talks about it. YES, bra too tight! Stopped wearing one! Sometimes red dots on my skin. I was scanned by probe at Heartlands and the pain has not stopped since. The biggest size was 10cm as he could see. NOPE you cannot wear laced up shoes!! At 42.16 I look like this beautiful woman but skinnier! My upper belly looks MASSIVE and I am not fat. It feels terrible to see the upper bit of your body is SO massive. It makes me cry to see myself. I am NOT a moaner, but nobody has really ever looked at me.
Hi, sorry you are experiencing the unpleasant effects of PLD. Have you seen a liver doctor? Dr Ahmed works at the QE and would see you if you are a Heartlands patients. Unfortunately, the general public tend to jump to conclusions when they see a large abdomen - they often ask if you are pregnant or might just think we are fat. We need more awareness of the impact of massive cystic livers and kidneys.
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I need help please I have Polycystic Liver Disease
I have PLD. Found out last June 2021.
Our family Dads side is riddled with it. Although he's skinny & doesn't have problems with his PLD!
My tummy is huge. But so far (age 52) I get very few other problems with it. Occasional acid indigestion which some Renee nips in the bud.
I was a size 10 clothing until I turned 40, that's the worst bit for me, I miss being slim! I went through menopause age 41, & thought that's why my tummy was getting bigger. Calorie counting didn't help.
Then I would get gallstone symptoms mid 40's, when I ate fatty food. GP wouldn't send for a scan, said if I had PLD they don't do anything anyway, just said avoid fatty food.
June 2021 I had a renal ultrasound for something else & she couldn't see my right kidney at all, as my liver covers it haha she said my liver is full of cysts. I just rolled my eyes, didn't surprise me, always kind of expected it.
I was sent to Hepatologist in Jan this year, she booked a CT scan with contrast. Hepatologist wrote & confirmed PLD, & some Diverticulosis. No PKD. None of the family have PKD with PLD.
Not back to see Hepatologist until next Feb, so over a year since I last saw her.
What's your update? My story is so similar
My father have PLD, he is 66 and liver has captured entire abdomen and putting pressure on intestine, lungs and bladder, now his legs started getting swellings.
I have been told to not eat this and that, by my GP. When I said I LOVE veggies she was disbelieving! Last night I ate a whole cauliflower and she was stunned! I don't eat pasta or pastry as its bad for me. I eat only once/day as tummy too small. I ensure it's a good meal.
This disease must be HARD for these dear people. I have had 3 children.
Now 61. I MAKE myself walk my dog.
I will NEVER have a transplant because I have lived a life and am happy. Ready to die any day. I will go into a trial to help others.
I have had sweats since my scan!! ++ pain. I guess it was a burst one, as the scanner REALLY hurt me. No probs, they have to LOOK!
I find Peppermint capsules great after a meal.
I was diagnosed PLD. 2 weeks ago I had a scan with a probe and it has caused me pain ever since. My kidneys are fine, it seems.
It's no fun having this as you feel pregnant all the time. With a head out to the left! I stopped wearing a bra years ago. I am 61 and still able and ready, walk my dog etc.
I feel SO SORRY for people with this. It feels like your abdomen is ALL!
It bloody hurts! Nobody talks about it.
YES, bra too tight! Stopped wearing one! Sometimes red dots on my skin. I was scanned by probe at Heartlands and the pain has not stopped since. The biggest size was 10cm as he could see.
NOPE you cannot wear laced up shoes!!
At 42.16 I look like this beautiful woman but skinnier! My upper belly looks MASSIVE and I am not fat. It feels terrible to see the upper bit of your body is SO massive. It makes me cry to see myself.
I am NOT a moaner, but nobody has really ever looked at me.
Hi, sorry you are experiencing the unpleasant effects of PLD. Have you seen a liver doctor? Dr Ahmed works at the QE and would see you if you are a Heartlands patients.
Unfortunately, the general public tend to jump to conclusions when they see a large abdomen - they often ask if you are pregnant or might just think we are fat. We need more awareness of the impact of massive cystic livers and kidneys.
@@pkdcharity2000 Yes, am waiting for a Consultant opinion. I also have Vasculitis. A bit of a mess, really!!
I live in Castle Bromwich. Just moved here. I can be your guinea pig!
I am an otherwise fit 61 yr old (With a false hip and no uterus!!)
The only thing I will say that is good is PLD makes you sit up straight!!