Life with Polycystic Kidney Disease (PKD)
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- Опубликовано: 17 окт 2024
- Craig and Kay talk movingly about life with Polycystic Kidney Disease (PKD) in their family. They describe how it affects them and their hopes for the future.
Filmed exclusively to support 'Give PKD the Bump', the European PKD Awareness and Fundraising Campaign 2016.
“The hardest thing about living with PKD is knowing that someday there is a high chance that my Kidneys will fail and just waiting for that to happen”. - This has always been in my mind since I was diagnosed with PKD April of 2017.
I live in the Philippines and I am 29 years old. A year ago I was diagnosed with PKD and it was not new to me since my grandmother died from it at age 57. My mother and all her 5 siblings have it. My sister also has it. My cousins are still young but they have high chances of inheriting the disease. Now, my Nephrologist advised me to cut down or stop high protein intake, increased oral fluid intake, and started my anti hypertensive drug since My blood pressure is already elevated. The biggest cyst I have is 4.4mm in my right Kidney which a year ago was only 3.7mm. I had my ultrasound and MRI and will have my follow up check up once the results are out. It’s been a week that I stopped eating any kind of meat. I am only eating fish, seafood, and vegetables and no soda at all. I have been wandering in the internet looking for new treatment but found nothing. But seeing things like this make me think that there’s always a way to slow down the growth of the cysts and I guess that’s the only way. Needless to say but I am a Nurse by profession but it is so sad knowing that you are living with a disease that you don’t have control over with. I am sharing this experience because I want you to know that I feel you. Cheers to a more liters of water! ❤️
This is just superb, I have been researching "acquired cystic kidney disease radiology" for a while now, and I think this has helped. You ever tried - Sanilliam Simplex Superiority - (do a google search ) ? It is an awesome one of a kind product for revealing the trick to Improve your kidney function without the hard work. Ive heard some amazing things about it and my colleague got excellent results with it. Zos & Ej
How you are feeling now
I had MRI last October and the cysts in both of my Kidneys are still at the same sizes. One thing I did differently was drinking Cranberry juice and even until now. I have not gone to my nephro yet due to the limitations caused by COVID19. Hope everyone is fine.
Liufox1 - I have not heard of it here in the Philippines.
@@zosandej do you experience side or back pain. As your cyst is much smaller than mine. I don't think you will be facing problem rightnow. Do you follow any diet plan.
I know somebody who is almost 65 years old and has been living with P.K.D for last 40 years and still going strong , keep your blood pressure low and reduce your weight .
Keep up the hope .
True.. Blood pressure should be under control. Thanks
jalal rumi Vitamin B3 is also important for pkd patients. Studies have shown it can reduce the growth and reduce the size of cysts.
I have PKD I have had it since I was 10 and now I am 12
Leighton Spalinger I found out about it when I was 19 and now I'm 25.
YourSincereWellWisher I have a question how are the years in pain wise are the first 2 years hard or 4 or even 6
I have Pkd my grandfather,Dad,uncle brother sister and daughter all have it too. It's not easy having it,I'm sick and in pain often. Right now my left kidney is hurting and I think I have another uti which is common for this disease. I've been admitted to the hospital 3-4 times for infections which have dropped my kidney function extremely low. Dialysis in around the corner as I'm teetering between stage 4&5 with a gfr of 14. While having this disease sucks there are diseases much worse,atleast with adult Pkd you can lead a fairly normal life. New treatments are being worked on all the time. 18 years ago when my Dad died from it we hardly had internet and finding info on this disease was limited,now there's a wealth of info and support out there for us.
lazy brat I hope you're doing alright. Are you taking vitamin B3 (Niacin) for its treatment ? If not then I suggest you start taking it from natural sources. Also maintain your weight and control your blood pressure. You should be fine. Hopefully more treatment options will be available soon.
+lazy brat People who suffering from PKD. Please watch out for *BRAIN ANEURYSM.* Check your family history and ask your doctor about it.
Haw is the situation naw
I have PKD , listening to you. I am crying
Almost Dead I have it as well. Please don't lose hope. You just need to make sure you consume more water (at least 2 litr) everyday and keep your weight & blood pressure in control. You should also start eating foods high in vitamin B3 (niacin) such as tomatoes, mushrooms, avocado etc. Research has shown it can reduce the size of the cysts and prevent their growth.
Almost Dead Don't forget to cut your protein consumption. Filtering protein gives kidneys a really hard time. Take good protein.
Lets fight I am 12 and since I was 10 I have had PKD
Leighton Spalinger Yes we are fighters. You are very brave my dearest.
YourSincereWellWisher thank you you too we will be fighters forever until we die and go to heaven
Just to balance things up a bit, I’m 67 and have PKD and will be looking at dialysis in around three years at the current rate of deterioration. In other words, I’ve had a long life and have been ok other than a bit of pain from time to time. In just depends on your genetics and the type of PKD gene you have (mine is type 2).
Be positive: 50 years ago there was no treatment or help to be had. My grandmother died in hospital with PKD. Look how far we have come in that time and be thankful.
Herbs from Dr emuakhe will give you a lasting solutions
You Lost your mother because you don't believe in herbs.your is your situation naw because herbs from Dr emuakhe healed me completely from my kidney deases and I promise him I will let the World knows about his great herbs
Hi, I’ve recently had a baby and she is of 6month old .she has adpkd pkd 2. Is this what you were referring to type 2 means pkd 2 right?
@@Vijayabharathidevianyone of her parents also have this disease?
I have PKD, my dad has pkd and so does some of his siblings. My siblings don’t have PKD.
But what I’ve learnt is that you need to cut down on salt and red meat and have a lot of water and veggies. Even sugar isn’t good. Try to maintain your blood sugar, stay lean and you should be fine. I have it in both my kidneys but they are functioning well. Diet is the way to go.
Herbs from Dr emuakhe will healed the entire family from kidney deases
Sorry I just know english alittle. How old are you?
@@DungTran-ew9pl by his Grace i m 65 naw.i m much happy and my wife is happy as well becouse same doc cure her herpes
You're absolutely right..... Good morning Dylan how are you doing over there hope you're having a wonderful day it's another lovely day that the lord has made.
The guilt and worry is a complete waste of time. The only certainty in life is death. You can be diagnosed with PKD one day and crushed to death by an overturned cement truck the next day, so what? I speak from experience because I grew up with all of the boo-hoo and hand-wringing. My grandmother died from it at age 44, so when my father was diagnosed at 32, he thought he'd be lucky to make 50. As it turned out, he didn't hit dialysis-or-death until he was 66 and got a transplant on his 69th birthday. He lived to be 78 - same age that his senior triathlon champion brother-in-law died from cancer. As for me, I was diagnosed after a brain aneurysm at 38. Grew and blew another one at 52. Hit dialysis-or-death at 59 and I just turned 66. And I'm happy as a clam on dialysis. Didn't think I would be, but I am. Some people's bodies don't respond well to it, but others do. Unfortunately, all we ever hear about is those who don't. Oh...and I can't overemphasize this enough - if you go on dialysis, FOLLOW THE RULES. Don't mourn ice cream and french fries. You're an adult, remember that. To sum up, the best way to deal with PKD whether you have it or you're in a relationship with someone who does, is to live one day at a time and stay out of the forecast business because it won't do you any good. I've outlived many, many friends who've perished from far worse things than renal failure.
People who suffering from PKD. Please watch out for *BRAIN ANEURYSM.* Check your family history and ask your doctor about it. *please spread the word.*
That's actually what scares me most, have discussed with my GP that I won't want bringing round if I'm severely disabled from it
Plz give me advice i have pkd and kidney as well as liver have multiple cysts liver size is normal my age 26 years male what to do so that my liver can be saved plz answer me
@@loopylou6841 Had two brain aneurysms 13 years apart. No deficits from either one. Fear not, for it is the greatest waste of time we have.
Remember God can heal he done it before anything is possible in his eyes pray and change the way of eating and keep praying to God he hears us ....🙏prayers for everyone
Definitely!!but immediately seek meditation too!
Then why did he/she give it to us in the first place? Sorry but I don’t share your view.
Thank you x
Amen Amen 🙏
@basil thrush is like me saying why I had cancer my faith is bigger then my fears and I had it twice only if you can open your eyes and call out to him and give him your heart
Hello my churchh is holding a 5k run to bring awareness to and raise funds for PKD what it be possible fir me ti use some clips from this video to make a video promoting it.
Hello. Yes, please do use the video.
@@pkdcharity2000 thank you. This is very much appreciated.
I suffer from pkd also since birth and I've been on dialysis for five years.,
Let's fight for hope for our kids for all of us
Its rough i have rapid progressive PKD im 23. My mother died of an intercranial aneurysm at 57 from complications of PKD.
My father has been recently diagnosed with PKD. Now, I am wondering if I will also have one. What should I do, now?
Herbs from Dr emuakhe healed me completely from kidney deases Same herbs can help you as well
I have heard that cysts are fed by sugar! I have gone on the Carnivore diet to see if starving the cysts will shrink them. I also need to drop from 200lbs to 150. I'm 5ft 7 inches . 179lbs 29 more to go
Yes you are correct the cyst do feed on sugar, however meat is even worst! Meat even seafood adds to my stress for diseased kidneys. 😢
@zcallier so what do I eat? I feel 100% better more energy. No more bp meds and arthritis medicine. I work 55 hours a week fixing heavy equipment and run my farm.
I'm 42 years old with pkd. We r 8 bro and sis unfortunately 7 of us having pkd.now 2 of my sister's seeking for kidney transplant. It's very expensive and its hard to get.dont know what to do.my creatinine is 200 now gfr is 32
Ziggy What goes around comes around You guys really need to cut your protein intake. Take only good protein. Control your weight & blood pressure. Drink ample water and eating foods rich in vitamin B3. This is the best treatment we have as of now.
Ziggy What goes around comes around I hope your sisters find suitable donors. Please take care of yourselves.
What is Ur kidney size now..
Tired of being in daily pain due to PKD. I just want some relief.
Herbs from Dr emuakhe did it for me.same herbs can do it for you as well
I am 30 i have PKD, since my parents don’t have it i am happy. So i am going to plan babies if someone help me how i can help so my babies don’t have this. And is it safe to be pragmatic
Hi, you can opt for IVF with PGT-M which is very effective in choosing the embryos that are not affected by the disease and help in preventing the disease from your offspring.
My baby has it too..he is only 4years...i dont know what can help him
I have PKD, was diagnosed last 2018, and having largest cyst measuring 6.9cm by length.
Haw is your situation naw
I had one in 2021...6.3 and do a ulrasound few days back it 6.2
I have PKD, and i dont know what should i do
+Agnis Muliano For one thing you must keep your blood pressure in control. Make sure to find out in case your family has a history of *brain aneurysms.* Talk with your doctor about it ASAP.
Allah will help u
Haw is your situation naw
I have Polycystic Liver Disease. Kidneys unaffected which is rare.
I was suffering from similar issue in the past,but I'm glad it has been fixed
May i know what treatment u took
I was diagnosed in 2013. Took about a week to come to terms with it. Ever since I’ve just got on with it.
2020 started peritoneal dialysis, got infection, went on haemodialysis for a bit then had a transplant. It’s not a death sentence, you can live a relatively normal life with it, but expect some fun and games in the later stages.
It’s not a given that your children will have it, I’m the only one in a family of six that has. Your attitude toward the disease will be a factor in how well you fare. Don’t let it beat you.
I know how hard it is to cope with PKD. I'm a Polycystic kidney disease patient. However I know that Jesus will heal and cure us completely from polycystic kidney disease.
Amen
Yessss
Yess
amen
Please research curable treatment for this disease.
Working on it :))
i think i shouldnt have kid . I am 25 and found out i got Pkd days ago, already big cyst (59mm - 40 mm). My father was gone by this at 44 and his mother was 58 . If my father was me , i think he would do the same eventhought i am very thankful to him for having me on the this world .
Trần Thanh Bảo Start taking vitamin B3 from natural sources. It is proven to prevent the growth and reduce the size of cysts. It may be the best cure we have for this disease right now.
Trần Thanh Bảo Don't forget to cut your protein consumption. Take good protein only.
I am a girl with PKD I have had it since I was 10 and now I am 12
Hi bro how much kidney size expand
@@yoursincerewellwisher1695 pkd disease possible cure🤔
Oh 🥺Am I supposed to be getting check ups then?
My 15 month old is about to go on the transplant list. Although there is a family history of ADPKD, we were told because my husband's mom doesn't have it, that means none of the kids can have it or pass it on. Kids haven't tested positive for any known mutation, but definitely has some form and apparently I do not marry the ARPKD mutation so he shouldn't have that. My 15 month old, my 4y/o, and possibly my 2.5y/o have it, they don't think my 5y/o has it. I feel so lost.
Don't try it.but if you do.,I wish you good luck.becouse herbs from Dr emuakhe healed me completely from my kidney deases
Haw was the transplant? Look there is no scientific cure for kidney deases.herbs from Dr emuakhe healed me completely from my kidney deases failure in just two months.m presently free from kidney deases
@@dianaferreira4089 he hasn't had it yet. He was listed last month though
Kidney Disease is often reversible in adults. But it's not in kids except in AKI or when the CKD is secondary to something that's commonly a cause in adults (such as uncontrolled diabetes, typically type 2) There's some rare instances of kids "growing" out of it; where the kidney tissue just randomly matures and the cysts disappear, but typically as long as the child has their own kidneys, they will continue to be diseased.
This is why the process for a pediatric kidney transplant is so vastly different than adults. Kids can be listed significantly earlier than adults, but thats because CKD in adults can often be reversed and in kids statistically that's just not likely.
@@mrspokitstheriot477 but you heard me louder and clear.hear from the traditional doctor before you conclude on your own
It can be reverse with juicing and plant based diets
You can slow the progression
I have pkd
+Jacob Henshaw People who suffering from PKD. Please watch out for *BRAIN ANEURYSM.* Check your family history and ask your doctor about it. *please spread the word.*
No matter what . I am not going to do dialysis. I don't want to live on a machine. .
Me either
Me too.
Me too
Both my nan,mum and uncle have pkd
gaming giraffe You folks should start eating foods rich in vitamin B3 (niacin). It prevents the growth of cysts and also reduces their size. Also make sure you consume ample water and control your weight & blood pressure. This is our best bet right now.
I was born with pkd it's scary.to have
My son is too. Before doctor told no problem. But I have just check internet. I m too much stressed. How old are you?
@@DungTran-ew9pl 26
Yup its no fun.