PKD awareness Day - My life with Polycystic Kidney Disease

[@xxxxgiancarloxxxx]

I was diagnosed with ADPKD1 at age 16 which was passed down from my dad. I still remember me and my sister going to the hospital for an ultrasound to get checked to see if we had the disease. My sister went first, she was in the chair for about 5 minutes. Then it was my turn and I was in the chair for a lot longer. I knew then I must have it, and I did. For a good 10 years I was fine, no pain or anything. Then along came the sharp pains in my sides and back. And I started to feel my kidneys growing. Getting out of bed and putting my socks and shoes on would cause a painful twinge in my sides. A few years later I got put on a trial drug called tolvaptan. But it didn’t help me, my kidneys were still growing and causing discomfort. I was an active guy and always going out with my friends. but I then started to stay indoors more because I was tired and my back was hurting. I also had multiple hernias due to the disease, very painful. I had been in and out of hospital due to my kidney cysts rupturing a few times. And have had many iron and blood transfusions because of it. Life wasn’t great and it changed me. I’ve always been a positive person and looked on the bright side of life, but my life was hell. I had lost contact with friends because I didn’t want to go out anymore due to the pain and lack of energy. I let myself go due to not being as active as I was. It was a terrible time. Then the time came to start dialysis. I told the doctor I wanted to have peritoneal dialysis. My dad also had peritoneal dialysis, I experienced it all with him and my mum and I knew what to expect. I told them I really don’t want hemo dialysis because I don’t want a fistula on my arm. Then on my next visit to the consultant I could see he had something to tell me and it wasn’t good. He told me I couldn’t have peritoneal dialysis because my kidneys were so big that one of them would have to be removed to make space for a transplant kidney. Because I was unable to be put on the transplant list until there was space for the donor kidney. And they would have to cut in to my peritoneal lining to take it out. And he said once they cut through the lining then peritoneal dialysis is not an option. So I had to go on hemo dialysis. Which I really really really didn’t want!. But I had no choice. I was so upset and depressed about it. Going to a dialysis centre 3 times a week for 6 hours was very daunting at first, but I got used to it. I then got a call from my consultant to arrange a date to have 1 of my kidneys taken out. They only took one of them out because even though I was in kidney failure I was still passing some urine so I wouldn’t be limited to such a strict fluid intake. Now…this is where my life changed drastically!. On the 14th May 2021 I had my first kidney removed. It was 32cm and weighted just under 6kg. After a few months I was then put on the transplant. Then 3 weeks later I got a call saying they had a kidney for me! 3 weeks!!! I couldn’t believe it!. My dad had to wait 6 years for his transplant!. So on the 9th August 2021 I had my transplant. Everything went great!. And then on the 2 May 2022 I got a call from my consultant saying he wanted to have my other bad kidney taken out on the 9th May! I was so so shocked! So I did and I’ve not long recovered from it all. I couldn’t believe it I had my first kidney removed, then had my transplant kidney put in and my 2nd kidney removed all in under a year! Absolutely amazing!. And now I’m doing great, I’m back at work and living life to the fullest! I’m sorry this story is very long haha, I just wanted to share my journey with you 😁

[@roivosemraiva]

Thank you for such detailed story of your experience with this disease. My mother had the disease and now at 70 years old I have it ..

[@amoremiaa.149]

thank you so much. i learned that i got the disease at 13 and now i’m turning 15 and i’m always nervous about what is going to happen in the future but you’ve made me realize that something great can happen!

[@ismaeljrmorales3613]

I truly hope you can answer this question for me please, I know each case is different but from age 16, at what age did you need dialysis due to significant kidney damage?

[@KishorSeja]

Woww Thanks for this. I have the same disease since my birth.I am 31 years old now my kidney size is about 16cm .I have lot of fear that how I will have to look after my family after some year if I get more sick. After I watch your comment here I feel better that we have some options still to get better life later. Thankyou so so so so much for your post . It’s really very great help for me and we will now plan for my dad’s kidney transplantation. Thankyou soo much!!!!

[@aimeehughes9702]

I have PKD and am intermittent fasting 20/4. Along with the keto diet. I’m not needing to lose weight just hoping to shrink my cyst and improve kidney function. I’m on month 4. My kidney function went from 48 to 60. 😊 I feel much better too!!

[@DiHickman]

That's awesome! Similar results to me with GFR so that's awesome. I also didn't need to lose weight but it just happened on keto. I had to increase my calories. Same goal, reduce kidney size and cysts. I have to say after 10 months the difference this year to last year is amazing, I feel so much better! The case study results should be released soon, but the initial data suggests mostly positive results. They got a grant to do clinical trials. So I believe over the next year or so we'll know so much more about this diet and it's affect on PKD.

[@aimeehughes9702]

Di Hickman how would I sign up for a clinical trial? I’ve been searching but coming to dead ends. Thank you for replying. 😊

[@DiHickman]

@@aimeehughes9702 I don't think it's accepting applicants yet. As I recall it was Canada only. But PKD foundation has a list of current trials and studies.

[@timeless4369]

Do you have to do vegan keto? Also have you tried a bhb supplement? It supposedly works just as well as keto.

[@wiseshepherd3050]

Hey, do you have any update on your gfr? Your last comment was 5 months ago. Thanks

[@rebeccahherdener2068]

I was diagnosed at age 26 with PKD. You've given me more information than the doctors ever did, and I appreciate that. For some reason the docs I saw were extremely dismissive. It made my situation worse tbh. I'm 32 now, and my friend and next door neighbor just went to the e.r. for kidney failure the other day... And it hit me so hard. Again. She doesn't even HAVE pkd, but yet her kidneys failed out of apparently no where. I'm dealing with a massive round of depression due to this... And I don't know how to handle it rn. I'm trying to stay positive... But it's really hard. Ironically, the only reason I'm worried about MYSELF,is because of my family. My husband and 3 children are MY EVERYTHING... I don't want my life gone because they would suffer...and it makes it really hard to swallow the fact that I have this disease. I never even knew about it until I turned 26. Then it came out of the blue news wise after I went in for yet ANOTHER kidney infection that year(I'd had around 4-6 that year.. and couldn't figure out why.)and they took a ct scan and found some cysts right there on my kidneys...then I went in for the typical ultrasound to make sure..and sure enough...I had it. I still have the ultrasound pic. Nobody ever told me it ran in the family. I was devastated when I found out. My life span shortened dramatically, the worry for my children grew...etc... Family is everything to me... I don't know how to handle all this. I'm worried I'll never even have the opportunity to get a kidney replacement or anything.. I'm just scared. Mostly for my babies and husband, but also because I won't be able to see them as long as I'd have liked. I can mostly handle the pain. The discomfort of feeling my kidneys and such... It's manageable..for now. I just can't handle the fact that my babies could have it, or that I'll have even less time with them when life already seems so short. All I can do right now, is live in the moment, and create as many happy memories with my husband and babies as I can,and show them and my husband as much love as I can,while I am still able. In the meantime, I pray. A lot.

[@DiHickman]

Hi Rebeccah, so sorry you're dealing with this terrible disease with us. Yep it can and is depressing at times, but as you said "live in the moment". I have an update coming soon on my journey so stay tuned for that. The one thing I want to address that hit me is this "My life span shortened dramatically," not neccessarily. Many people with PKD have normal life spans, the quality of that life may be different but then I had a 36 yr old friend pass away this year unexpectedly so you just don;'t know. I know how hard this disease is emotionally but keep living in the moment and do what you can to stay present, and healthy! Much love!

[@rebeccahherdener2068]

@@DiHickman it just feels like I've had something taken from me that I can't get back is all. Time that I didn't have to worry if I hadn't had this disease. That's what I meant by "shortened my life dramatically". I appreciate the supportive word and look forward to your update! Hopefully you're doing amazing! I'm doing a little better now. I hung out with my friend who's kidneys are failing, and we chatted and such. It helped a lot. She's amazing,and I'm so glad I can call her my friend. She's so positive and jokes about everything, and it really puts things in perspective. I'm blessed tbh. I really shouldn't get the way I was earlier. I have people who support me, that I love and love me back. What more could I really ask for?💕

[@CaptainSteve777]

Don't feel hopeless. God answers prayers. At age 66, I completely controlled my PKD to the point that I consider it a treatable disease similar to how diabetes is treatable. Every nephrologist told me to expect a gradual decline in kidney function until dialysis and the transplant (as happened to my dad and same-age sister who are both now deceased from PKD), but some people (including myself) have been able to slow and even reverse the decline. Cysts need glucose to grow. Cut glucose and they stop growing or in many cases start shrinking (like mine). I've been eating a very-low-carb clean whole-food low-oxalate low-purine low-phosphorous anti-inflammatory keto diet (75% fat, 10% carb, and 15% protein), water and IF fasting, super hydration, and maintaining a urine pH at or near 7.0. I use KetoCitra which improves ketosis and keep a proper pH to make sure microcrystals can't form in the tubules in my kidneys that are thought to be the initial cause of cyst formation. While doing all that, my GFR decline reversed and within 3 months all my nasty symptoms were gone (pain, GERD, high blood pressure, bloated feeling, etc). My eGFR was rapidly falling at 54, I was prescribed Tolvaptan I declined, and was estimated 3 years from dialysis. Now my eGFR is 84, and per my last MRI, my largest cyst shrank in volume by 55% (18cm down to 10cm). You can do it too. Cheers

[@ismaeljrmorales3613]

How old are you now? I was diagnosed at mid 24years old. I have my little family too 😢which the thought of what comes with it breaks my heart

[@ismaeljrmorales3613]

@@CaptainSteve777 you’re my hope !! Thank you so much! A strict diet really is the main source to a longer lifespan

[@SantaBarbaraNutrients]

We are so glad keto is working for you, Di ! Thank you for raising awareness and highlighting our research.

[@DiHickman]

My pleasure! So grateful for all the research the team as done!

[@CaptainSteve777]

I help a lot of people when I can with PKD info, but haven't been able to make a video. Well done!

[@suhanabutt7922]

Can you mention which fruits and vegetables u take???,and what kind of fruit juices??what you use instead of sugar???

[@CaptainSteve777]

@@suhanabutt7922 No sugar, and minimal fruit. Carbs cause/feed cyst growth.

[@KishorSeja]

Thankyou soo much for this great video dear!!!!

[@sanjoykumardutta6068]

Thank you.. I am 31 and have PKD Thank you so much.. I have always been down.. However you have encourage me to be strong and fight back all negative thoughts. Appreciate 🙏 Love ❤ from India.

[@DiHickman]

Totally, always fight!!!

[@Ap98Rly]

Bro mujhe bhi pkd h ab me kya Kru btao aap😭😭😭😭

[@BadBoy-dn1md]

@@Ap98Rly kitne sal ke ho bhai?

[@Ap98Rly]

@@BadBoy-dn1md 23 saal ka hu bhai

[@BadBoy-dn1md]

@@Ap98Rly apke family me aur kisko tha?

[@rainbowhealinglightenergy1313]

I'd never heard of PKD before watching this video, thank you for telling us about it. I think you're a very brave person and am glad the diet and intermittent fasting are helping 🌻Sending love and healing thoughts to you and your family.

[@DiHickman]

Thanks so much for watching and your kind words.

[@kimcollard4001]

Thank you creating awareness of PKD.. I'm 50, have stage 4 of the condition. We just found out our 17yr old son has it.. :(

[@DiHickman]

Sorry to hear that.

[@Rattus1]

Love your positive attitude, stay strong!

[@DiHickman]

thank you!

[@roivosemraiva]

Thank you for your video...I have multi Cystic disease of my kidneys, Liver and Pancreas. All genetics. It has now being monitored to my heart and Brain..waiting for them to burst. And yes, i have no kids . It stops here.

[@davieskelmen7125]

I have ADPKD, I have been dealing with the pain and other complications since 2010. Including a cute pain on my back and flanks, kidney stones, rapturing Cysts etc. I understand what you are dealing with and I pray for God to give you strength even as you deal with your condition. If you need someone to talk to either email or call I am here . I too need a friend that can relate

[@mistric5951]

Your age?

[@davieskelmen7125]

@@mistric5951 about to turn 44yrs

[@mistric5951]

@@davieskelmen7125 my girlfriend have this disease and she's 18. doctor said that you have to take high bp medicines now,🥺🥺will she be okay

[@davieskelmen7125]

@@mistric5951 she'll be alright. I have been faithfully taking my BP meds for over 10yrs now. Of course once in awhile I deal with extremely painful cyst rupture and infection, rather consistent flank pains that can be managed, lower back pain and pain when bending. But, after a while you manage with the condition and establish routines that work. I love manual work but I have noticed a connection between straining and pain. I have learnt to budget moments of rest in my day. I need a lot of it. Lastly, you will notice frequency in needing to use the bathroom for short-calls especially at night. At first it bothered my wife that I kept on waking up. But she has adopted quite well. Lastly, my sex with my wife is healthy

[@mistric5951]

@@davieskelmen7125 what's your regular bp sir

[@Down2hunt]

Thanks for sharing that. I was totally unaware that pkd was even a thing.

[@DiHickman]

Don't worry you aren't alone. So many people unaware about PKD. Just doing my bit to help raise awareness!

[@KishorSeja]

@@DiHickmanreally great help dear

[@TheHartlands]

Great video, I have been diagnosed with ADPKD as well but my family line never got to the transplant stage and a lot of them passed due to the side effects of PKD with high blood pressure. I have ended this on my family line by doing genetic testing so my newly born son I know doesn't have pkd.

[@juliannewhitney4451]

It would be great to have a video of a workout for those of us with PLD and PKD! My nephrologist suggested core exercises like sit-ups, but I can’t imagine doing sit-ups with such a large liver and kidneys:)

[@DiHickman]

Great suggestion!

[@Rock-uu7iq]

Got diagnosed with PKD 12 yrs ago, yesterday I went for another test coz I was feeling pains on my right side. I’m yet to be read for the outcome on Tuesday.

[@DiHickman]

how you doing? I dealt with terrible pain on my right side in 2019 so I sympathize!

[@Rock-uu7iq]

@@DiHickman hi, I was given very strong pain relievers at the hosp which helped a great deal. I'm ok now tho the cysts a there, test showed my kidneys function normally.

[@BadBoy-dn1md]

@@Rock-uu7iq how old are you bro?

[@Rock-uu7iq]

36

[@BadBoy-dn1md]

@@Rock-uu7iq apke family me aur kisko tha bro aur app kya kaam karte ho?

[@asmatullah3896]

My new born baby have Polycystic diseases in both kidneys.• Right echogenic kidney with innumerable cysts. • Left renal pelvic mild dilatation + innumerable cysts with replacing renal parenchyma

[@spongepau69]

Thank you so much 🙏🏾🙏🏾

[@oliviahaubrich4474]

I have ADPKD and I have heart failure and I also have diabetes. I'm always in pain and was as a child and never really knew what it was tell after I have birth and they never told me much about it but to live my life and after my 2nd child I was done with having kids, I almost died and also found I have sickle cell trait. I am 29 years old and I have a pastmaker already and on insulin and on my way to needing hemo dialysis. I'm hoping and praying that its a far ways away from now. Would love to have a chat with you.

[@DiHickman]

Damn you are dealing with a lot! I am so sorry. If you want to chat email me and we can set up a zoom call.

[@ShabanaSRK.08-01]

Please consume kodo millet and little millet daily each 2 days u will be better and free from diabetic also please watch Dr khader Vali videos in KZbin for complete information

[@simoncorreia5686]

And my journey begins..

[@angierivera9807]

Lol I luv yur positivity. I have pkd and it's effected my liver as well and I'm. Now having heart issues. Im.unable to work due to constant pain n fatigue. I look forward to returning to work soon as I can manage the pain.. R u able to work ? How do u manage pain etc

[@DiHickman]

Awww I'm sorry you're having pain. I will say my pain went from a 10 to a 1 when I swtched to keto diet. I work as a yoga teacher but there are poses I cannot do anymore due to size of kidneys. I need to do a video about that really.

[@CaptainSteve777]

My PKD drastically improved and my LVH, inverted T wave, reduced EF, and cardiomyopathy all cleared after about a year on clean keto. I give that a look. cheers

[@danlaw1208]

Thanks for spreading awareness about PKD. I think i might be suffering from pkd because whenever i eat proteins, even vegetables such as tomatoes, cabbage, cauliflower, beans, mustard leave, i would feel extreme pain on both sides of my back exactly on the spot where kidneys are situated. What the food that a pkd patients should take.

[@DiHickman]

PKD is something you are born with, there are simple tests you can have to determine if this is something you have. It's a genetic disease and while family history is typically how it presents, random sporadic existence can occur. re foods: Get yourself to a dr and get checked, the foods you are talking about are high oxalate foods which can cause kidney stones in some people. Please go get checked out.

[@danlaw1208]

@@DiHickman thanks dear

[@ngurahadi1399]

Stay strong 🙏

[@DiHickman]

Thank you!

[@lochebulanondones4367]

I have polycystic kedney also because my father is died the age of 47 he also polycystic kedney

[@aneesharyan3910]

God bless you

[@pallavimn9887]

Hi. Im 36 yrs in have pkd.. But Bp and creatinine level normal less than 0.9 . So my question is if I follow healthy lifestyle can I avoid dialysis and control creatinine level in future??

[@DiHickman]

Nobody can answer that. Nobody knows what the future will hold. But, as the saying goes: genetics load the gun, diet and lifestyle pull the trigger. Do what YOU can to stay healthy

[@pallavimn9887]

@@DiHickman thank you so much for your reply 😘🥰

[@Guru-lt3sn]

@pallavi relax we're Indians most of us don't even get know the reason of death however. My family also has history of pkd. All of em are nearly 70 and over 70... so stop worrying and maintain healthy lifestyle.

[@pallavimn9887]

@@Guru-lt3sn yes that's true. 😊 thats nice to hear. Are they on dialysis?

[@Guru-lt3sn]

@@pallavimn9887 no one is on dialysis they take hypertensive medicines that's it.

[@shahminhajuddin]

Could you tell us what to avoid eating and drinking and what all will benefit (In long term) please? Thanks I am 38 PKD - (DI from Mom) I am freaking out, suddenly my abdominal area feels bloated and I can't LayDown or sit in cushioned seat comfortably. I don't know what to do, doctor kinda just said good luck and walked my out of door saying there is no cure to it. Suddenly life feels so cruel !

[@DiHickman]

I have update coming in a week or so, but yes I plan on doing more PKD content and sharing my journey and experiments. There may not be a cure but we aren't a lost cause!

[@shahminhajuddin]

@@DiHickman I hope you are right, I look forward to the update, and thank you for your kind words..💐 God Bless

[@ramprasadraju7431]

Hi Hickman, what was your maximum creatinine level before you started IF and Keto diet?

[@ramprasadraju7431]

Can we have your email id please?

[@alisharajbahak9706]

my dad got pkd too and he's in 5th stage but he doesn't want to do dialysis... in this case what could be the best thing to do? he has been taking medicine his whole life though

[@DiHickman]

You can lead a horse to water, but you cannot make them drink. Your dad has to want it for himself. My mom is stage 5, on dialysis currently. For stage 5 he needs to talk to his nephrologist, see a dietician, and look at the research. But again, it's his choice.

[@BadBoy-dn1md]

Are you from india?

[@DiHickman]

me? No

[@CaptainSteve777]

He should read about and start eating a very-low-carb mod-to-low-protein clean whole-food low-oxalate low-purine low-phosphorous anti-inflammatory keto diet (75% fat, 10% carb, and 15% protein), water and IF fasting, super hydration, and maintain a urine pH at or near 7.0. If possible, use KetoCitra which improves ketosis and keeps a proper pH to make sure microcrystals can't form in the tubules in the kidneys that are thought to be the initial cause of cyst formation. Combined, those gibve him the best chance of recovering some function (all that worked for me).

[@sahanayadav1400]

I m thirty Recently diagnosed with pkd

[@lailaahmed3362]

Ami & amar son PKD patients, KONO NGO ki amader treatment korate parbe? I'm very poor,please help me.

[@sissyrayself7508]

I have PKD and blessedly neither my children or geandchildren inherited it. I am very happy I chose to have children before I ever knew I had the disease. I would definitely NOT let a genetic condition ever change the fact that I had a family. But t I wach their own.

[@neerajmehla7619]

Diet plane morning to night 1 week plz tell me..

[@DiHickman]

Working on a video for this

[@almidahngwenyama7586]

What are the symptoms of pkd

[@kellyclover5953]

Many people don't realize that PKD1 and PKD2 are not the only bad genes that cause the disorder. Mine is caused by a faulty IFT 140 gene. The good news is that the bad gene I have is often less virulent than the other 2.

[@alexaprilalex]

A close friend of mine got PKD. He's interested in Keto diet & intermittent fasting you mentioned. Can you tell me more about how you proceed them & what improvements you are up to?

[@DiHickman]

I just did a bunch of research on the diet for a good month, trying out different recipes and learning about carb content, switching out condiments etc. My 6 month results: My GFR has increased from 63 to 76, and my creatinine went from 1.05 to 0.90! The major difference though is in how I feel. 2019 I struggled with many bouts of pain, and 2020 I felt amazing. No pain! I'm eager to see my results this year. However, the diet change was a learning curve for sure, but the results for me were nothing short of a 180° turnaround.

[@timeless4369]

Do you take bhb?

[@DiHickman]

@@timeless4369 I don't right now. I'm still waiting on more research to come out regarding 'just' supplements.

[@timeless4369]

Di Hickman The research takes far too long to come out and more research on bhb may never be done. Based on my research bhb is very safe to take so I think it’s worth trying. People talk about the potassium and sodium content but you can get bhb that is low in both. Anyway just sharing my thoughts. Thanks for the reply.

[@brianv41]

@@timeless4369 BHB ?

[@Dio269]

Hello, can i ask what stage of PKD you have? Also what were the numbers of GFR in your improvement? thank you.

[@DiHickman]

Of course. I am stage 2. I was declining into stage 3 however since keto I have gone from 63 GFR to 76!!!

[@Dio269]

@@DiHickman Thank you for sharing. Wish you all the best going forward. Stay safe.

[@DiHickman]

@@Dio269 no problem! I'll share more as I experience and learn more!

[@VinodYadav-fy4vl]

I also have pkd and iam very scared about it what should I do

[@DiHickman]

Get a nephrologist Go to PKDcure.org and read all the latest studies

[@BadBoy-dn1md]

How old are you bro?

[@wealthysharks63]

Can you please tell us what kind of food do you eat ?

[@DiHickman]

Working on new videos!

[@CaptainSteve777]

Here's what I eat on keto, and it's working GREAT. At age 66 my eGFR is 84. Avoid most simple carbs and sugars (bread, pasta, rice, starch, potato). Avoid or limit fructose (HFCS, honey, table sugar, and sweet fruit). Eat LOTS more quality fat, olive, walnut oil, flax oil, fish oil, avocado oil, coconut oils, and grass-fed butter, and fats in real foods eg avocados and salmon, grass-fed meat, full-fat sour cream etc. Cauliflower, cabbage, kale, bok choy, peppers, onion, walnuts, avocados, and pasture-raised eggs are awesome. Avoid processed anything such as processed or prepared food, and seed oils like canola, corn, etc. And avoid high oxalate and purines (spinach, beets, almond, cashew).

[@christianmeza4941]

@@CaptainSteve777 thanks a lot for the info for all the ppl that have this "thing" 🙏

[@Sohailhussain077]

​@@CaptainSteve777thanks,I have pkd, living with one kidney 😢

[@Guru-lt3sn]

So with pkd you can live near normal lifespan is it right???

[@DiHickman]

absolutely. My mother is turning 70 next week

[@shankershiva5942]

I need some your help

[@RKROJ-jc4yw]

Mam i also have adpkd and feeling pain in my left kidney also have cysts. I taking treatment by a nephrologist but pain is not decreasing. Please advice me what i do in yoga and what eat in food. Mam i can't understanding english language in video please tell me by replying i will translate it by google. Please....

[@hendrapattiiha4061]

I''m 35 y. Oant diagnosed with PKD in my both kidney, my creatine is 1,83 and my GFR 45, can I ask you abkut keto diet? I'm afraid that my GFR going worst.. Olease let me know about keto diet and my wieght is 86 kg with 182 cm tall

[@DiHickman]

Sure, what questions do you have about keto?

[@bhavyap1283]

Hi , are you still on keto ? How’s ur kidney function now ? Also did the kidney size change due to the keto diet ?

[@DiHickman]

I have a neph appt today, will update soon

[@bhavyap1283]

@@DiHickman thank you so much .waiting for the update

[@BadBoy-dn1md]

@@bhavyap1283 are you suffering from pkd?

[@proscontract5679]

how did you find out you had pkd

[@DiHickman]

It's genetic, there is a 50% chance of passing it down, my mother has it, an aunt, an uncle, my grandfather and 2 cousins.. I was tested at 18.

[@healthandhospital5494]

Myself Narendra and I am from India I am also suffering from this problem pkd no family history

[@DiHickman]

Hi, welcome to my channel! Unusual to have a new occurrence but it does happen. PKD is more common than people think

[@BadBoy-dn1md]

Bro how old are you?

[@myworld2298]

Ma'am pls help me... My husband scanned yesterday. The rslt is hyperechoic kidney.. Is there any cancer? I am waiting for your valuable reply 🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏

[@DiHickman]

Please talk to a nephrologist.

[@shankershiva5942]

My mother have a adpkd my grand mother also adpkd

[@DiHickman]

Yes it's genetic. Have you been tested?

[@ramyas325]

Hi , my husband has Adpkd , I was very stressed out , he is taking homeopathy medicine, his age is 35 now , should he cutdown protein intake, wat else should he follow

[@DiHickman]

Research PKD and keto diet. Spend some time on pkdcure.org looking at all their info. Find a nephrologist, and get to know the numbers: GFR/Creatinine, blood pressure. Work with your nephrologist.dietician regarding diet/water intake

[@Guru-lt3sn]

Salt restricted diet. And intermittent fasting millet diet would be helpful, use organic punarnava leaves it will be greatly helpful. Yoga meditation add to them.

[@ramk6655]

@@Guru-lt3sn I am 47 with PKD, creatine is 1.8. Could you please share some helpful suggestions to follow.

[@Guru-lt3sn]

@@ramk6655 i think ur creatine is normal... try maintain healthy diet and keep blood pressure under control..intermittent fasting will help and also try to consume punarnava leaves with water ... no to red meat be active physically..

[@ramk6655]

@@Guru-lt3sn Thank you for responding.Sure, I will follow your suggestions. Would it be possible to speak to you or mail you

[@ShabanaSRK.08-01]

I was diagnosed at age 30 know iam 45 I heard about pkd treatment in andhra Pradesh India Dr Jamal Khan ,i will consult him and inform u please wait

[@zunainmoini8134]

Hello i am APKD ... i am 28.... my weight js 78 and i want to reduce it... will protein intake ( unicity) will be helpful or a harmful to me?

[@Guru-lt3sn]

Definitely harmful don't go for it.

[@CaptainSteve777]

Depends on your stage of progression. Early stages, protein isn't an issue. Late-stage disease, it definitely is, but at that point, you need to be guided by a kidney dietician.

[@apanbortae]

Rest in peace, such a horrid disease

[@apanbortae]

Some just get a bad hand in life rip

[@supriyaramani7510]

Got to know recently never knew about it

[@proscontract5679]

And how have you been keeping up with the keto diet have you seen any improvements

[@DiHickman]

Yes I need to do an update... I am still doing keto diet 15 months later. My results from 5 months: Before Keto GFR 63 Creatinine 1.05 After Keto GFR 76 Creatinine 0.90

[@proscontract5679]

@@DiHickman When did you start showing symptoms and when did the cysts start.. How old are you know.? and would a kidney transplant help you..?

[@DiHickman]

When did the cysts start? They are genetic, I had them at 18 so probably as a kid. No idea. I'm 49 now. Symptom wise I started experiencing regular symptoms in my 40's. I'd have the occasional day before that but symptoms that interfered with my daily life probably around early 40's. Right now a transplant wouldn't be appropriate as my kidney function is good with a GFR of 76. My Mum and my cousin need a transplant so I'd encourage everyone to be an organ donor.

[@proscontract5679]

@@DiHickman Did you ever had microhematuria in you urine.? Thats what im experiencing.

[@proscontract5679]

@@DiHickman I know they say diet has a lot to do with the progression I ate of junk food growing up

[@MrSprewelll]

Hiii i am drinking lots of water is it okay to drink water with this disease?

[@DiHickman]

Talk to your nephrologist. Water intake varies according to the severity of the disease. For me I drink a lot of water as it's recommended

[@davekrell1403]

Yes indeed my grandfather kidneys where 4 times the size of o health y. One my aunt died from it I have a uncle that's dealing with it. Plus I have three coins that has it the one got a transplant. But now has type 2 diabetes so go figure.

[@deepikacheriyapurayil]

Mam.. Hw r u nw?

[@vjcreations6143]

(sorry for my incorrect English) I had Diagnosed with ADPKD on my age of 22 . Now im 27 , wt 60kg my Creatinine 1.52 and GFR 105.09 .. PLZ tell me will keto diet and intermediate fasting help me ? Does Keto diet include high dose of potassium and sodium which are not applicable for PKD ? Plz explain Thank you .

[@DiHickman]

Do your research on keto and PKD. With a GFR of 105 you are doing great! I can only speak for myself and what works for me. On keto you need things like sodium as your body flushes out electrolytes so quickly.

[@ajaymeena1559]

Aapke liver me bhi cysts he kya 🤔

[@mylazarate9512]

my father is pkd plz help my father

[@DiHickman]

If your father has it then you need to get tested also. Check out the latest research on PKD and keto, find a nephrologist, and go to PKDcure.org for tons of information

[@anilsagar4214]

Mam hidi me banae vidio

[@rakeshshukla6598]

I hv pkd

[@snowhabibi6928]

Cool learning I'm one in 600,000 lol

[@DiHickman]

welcome to the club lol

[@anilsagar4214]

Koe batayga a kya bol rahi hai hindi bolo...muje problem hai

[@pamspicy1095]

You should have done a better job of research on the topic.

[@DiHickman]

Thanks for your feedback, however this is meant as an introduction from someone how actually has the disease and is not a doctor. What more would you suggest I include?

[@mylazarate9512]

my father is pkd plz help my father