Queen of Dialysis: What Happened Next | Maddy Warren | TEDxRoyalTunbridgeWells

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  • เผยแพร่เมื่อ 22 ต.ค. 2024

ความคิดเห็น • 66

  • @donnadavis6190
    @donnadavis6190 5 ปีที่แล้ว +21

    My son wants me to be with him for training with home hemodialysis. At first, i began to panic just thinking of the responsibility and the precautions. But, after watching this courageous inspiring woman with the desire to live and encourage others to do the same, i feel so much more confident in helping my son. I realized the compassion i need to show and give my son after watching this. If i was in my son’s position i would want someone to be by my side for caring, help and support. Thank you Maddy Warren you are an inspiration. May God bless you.

  • @jalalrumi9653
    @jalalrumi9653 6 ปีที่แล้ว +20

    Your are also queen of so many other highly admired qualities including :
    Queen of hope , inspiration , enthusiasm
    Perseverance and kindness .

  • @LorneCo
    @LorneCo 4 ปีที่แล้ว +15

    I can so relate to this talk, I experienced kidney failure due to polycystic kidney disease at 37 years old at the time it was devastating, my wife and I had a 4 year old son. My wife decided to donate a kidney to me and 19 plus years I am doing well I have been employed full time and have done probably more things than if I was 100% healthy. I just made it to 2020 which I thought wasn't going to happen and now I expect to live a long life. I went and got my pilot's license which was a dream of mine since I was a kid, there is something about being close to death that makes you want to live life to the fullest and to appreciate it more. If you are going through kidney failure please do not give up hope, my father had kidney failure and lived to be 82 years old, my brother has a kidney transplant and is doing well. Currently, my three other siblings who also have PKD are getting close to dialysis and I am praying that they can get a preemptive transplant as I did. Very brave and a great job Maddie describing what it's like living with kidney failure, just wondering why you aren't doing peritoneal dialysis?

    • @romeorecaido5782
      @romeorecaido5782 4 ปีที่แล้ว

      Maddy, thank you for your inspirational talk. How often do you dialyze at home? 7 to 8 hours, is it everyday?

  • @ATATKDMama
    @ATATKDMama 2 ปีที่แล้ว +5

    I just found this today because my kidney disease is worsening & I'm facing dialysis. I'm young & scared. Your video really connected with me.

    • @galaxyearth60
      @galaxyearth60 ปีที่แล้ว +1

      There is always hope. For instance, new research shows that the kidneys are regenerating and repairing themselves throughout life. Contrary to long-held beliefs, a new study shows that kidneys have the capacity to regenerate themselves. This has happened to me after 8 months on dialysis, my kidneys are better and I'm off dialysis. When your kidney function starts to return, you'll start making urine, more and more as the weeks go by. Most doctors don't understand kidneys can get better, especially when a patient has acute kidney failure. And 4% to 10% of people are on dialysis who no longer need it. And they'll never know because their doctors have a closed mind about kidney regeneration.

    • @LPAFilm
      @LPAFilm ปีที่แล้ว +1

      @@galaxyearth60 What was your GFR and creatinine once you started dialysis? Was it just the dialysis or did you do other things as well? What's your GFR now? I've never heard of someone's kidney function returning AFTER they were placed on dialysis unless you started early in the AKD stage.

  • @a2zconference
    @a2zconference ปีที่แล้ว +2

    A queen indeed. A witness of hope, courage and beauty.

  • @msdevon311
    @msdevon311 ปีที่แล้ว +1

    My goodness. You have spoken for all of us who deal with this disease. I SO admire you!! I pray you are well. 🧡🙏🏾

  • @andygerow5080
    @andygerow5080 2 ปีที่แล้ว +1

    I needed this. Thank you. My brother is currently having Dialysis 3 times a week. You are incredibly inspiring and strong.

  • @merakli07
    @merakli07 4 ปีที่แล้ว +3

    What an inspirational & encouraging talk. I was diagnosed with Stage 4 CKD (I have PKD) This talk gives me hope for my future. Thank you Maddy!

  • @danielbrady1037
    @danielbrady1037 6 ปีที่แล้ว +9

    Dialysis is brutal. I was diagnosed with IGA nephropathy. I did hemo for 13 years and switched to nocturnal where I go for 8 hours. It's so painful

    • @aishahale8582
      @aishahale8582 5 ปีที่แล้ว +2

      Daniel Brady I have IGA as well. Dialysis 11 years now. I’m not interested in a transplant 🥰

  • @ronniefoster214
    @ronniefoster214 5 ปีที่แล้ว +5

    Wonderful speaker. Great personality. Lovely voice. Beautiful person. Very inspiring. You should speak for a living.

    • @marylaw8001
      @marylaw8001 5 ปีที่แล้ว

      couldn't say it any better than you

  • @nikkied76
    @nikkied76 4 ปีที่แล้ว +3

    So awesome I have a friend who's on dialysis so i'm trying to learn more and came across this. I love her positive attitude and outlook.

  • @aliboy7046
    @aliboy7046 6 ปีที่แล้ว +2

    Thanks Maddy, I so needed to hear this message and your previous one. Especially the unspoken issues you speak about such dating, work, diet and cooking etc. I haven't even started dialysis yet but this has given me hope to be brave and positive. Doing it alone at home worries me though.

  • @raylt7
    @raylt7 11 หลายเดือนก่อน

    THANK YOU

  • @marciareid4901
    @marciareid4901 5 ปีที่แล้ว +3

    Also want to add, I appreciate and admire your positive outlook and attitude, but it doesn't work for me and I'm sure a lot of others patients. I try hard to work at it but, when your in pain every freaking day it's difficult. . Everyone on dialysis have different situations. And for me it's my Avascular Necrosis of the Talus. Which is deteriation of the bone, and have been dealing with this since 1997. So, this artificial kidney needs to happen ASAP!

  • @nickmahendra136
    @nickmahendra136 7 ปีที่แล้ว +2

    Well done Maddie, you are an absolutely beautiful soul and a great inspiration to anyone on dialysis. I will be visiting the UK soon and would love to meet you. I believe we share some of the same objectives and would love to receive some input from you about bringing awareness about home dialysis in Porto, Portugal where I live.

  • @marciareid4901
    @marciareid4901 5 ปีที่แล้ว +7

    Hi, I'm a patient on dialysis for the second time. I started dialysis in October 1996, got a transplant November 1998 and it failed August 2001. And I have been back I on dialysis every since. I'm DESPERATE for the ARTIFICIAL KIDNEY to develop.I read by 2020 that more trial was going to be tested, if I'm not mistaken by Dr. Fissel. Please help!

  • @Lima547
    @Lima547 11 หลายเดือนก่อน

    Running my 3rd dialysis section now…happy for the technology and for what the future will bring when humans develop new technologies….

  • @jamieg9607
    @jamieg9607 2 ปีที่แล้ว

    Thanks for this talk. You’ve inspired me to do the best I can do.

  • @bernadettehall2273
    @bernadettehall2273 7 ปีที่แล้ว +5

    Very inspirational!! My husband has dialysis at a satellite unit but we're training to do home dialysis. We have two young children who have had to deal with the 'normality' of kidney disease. We're a strong family and both my husband and I know that getting home will be the best thing...apart from a transplant!
    Best wishes to you and to all living with kidney disease! Xxxx

    • @kayantoinette
      @kayantoinette 6 ปีที่แล้ว +2

      Bernadette, my son has home doing dialysis for 2 1/2 months and it is life changing how much better he feels. He is 23, in full time college, motorcycle rider and works out at the gym. He feels so good he says if he never gets a transplant he could be happy on home hemo for the rest of his life. How is your husband feeling since going home?

  • @vijayarya2688
    @vijayarya2688 2 ปีที่แล้ว

    Thank you all very much

  • @patriciafirth7173
    @patriciafirth7173 7 ปีที่แล้ว +5

    Wow - what an inspiration.

  • @YdaLoraineBautista-th7kh
    @YdaLoraineBautista-th7kh ปีที่แล้ว +1

    There isn't any home hemodialysis in the Philippines. You guys are so lucky! If you know someone who'd like to invest, please I encourage you. I will be your first patient!

  • @kayantoinette
    @kayantoinette 6 ปีที่แล้ว +2

    Maddie, do you have a support person to help you do home hemo? Our center (in the US) requires a care giver to administer dialysis at home. I am so blessed to be that person for my 23 yr old son. It is the difference between night and day how much better he feels doing it at home compared to 3 days a week in center. Right now he does 4 hours - 5 times per week and we are on the waiting list for when our center will offer nocturnal hemo.

  • @smallfryindustrialdesign1016
    @smallfryindustrialdesign1016 7 ปีที่แล้ว +1

    Great talk Maddy. Good luck with the marathon.

  • @myphoneapp1826
    @myphoneapp1826 5 ปีที่แล้ว +1

    amazing!

  • @pkrollin514
    @pkrollin514 4 ปีที่แล้ว

    How much is the Quanta SC+? Are there other good alternatives for home dialysis?

  • @historicalresearcher7516
    @historicalresearcher7516 4 ปีที่แล้ว +4

    I am doing home pd dialysis. I am grateful for it however I have not felt the great improvements that is outlined here. This clip has made me question why I am not as dynamic and energetic as this young lady. Sky diving would be an impossibility for me please don't think that home dialysis will necessarily provide this outcome but it will keep you alive

    • @lucygray6162
      @lucygray6162 4 ปีที่แล้ว +1

      My sister is also doing PD, and has no intention of trying skydiving. She is, however, grateful that she can now go grocery shopping without collapsing, and spend time in her garden without worrying she can't make it up the back steps. There other many small triumphs. Dialysis at a clinic nearly crippled her: she slept in dialysis, slept when she got home for a few hours, then slept all night Her muscles atrophied severely, but she was too exhausted to do anything, and almost gave up. It may take you awhile to bounce back if you have been ill for some time. Good luck to you.

    • @nessi16nl
      @nessi16nl 4 ปีที่แล้ว

      Maybe diet?

  • @m3cvfm
    @m3cvfm 7 ปีที่แล้ว +1

    Respect.

  • @jennybaber3563
    @jennybaber3563 6 ปีที่แล้ว +9

    This is all great when you are a youn/middle aged person. Most people needing dialysis are elderly and their bodies cannot withstand the brutality of dialysis so this video sugar coats the real nightmare of dialysis. Alternatives are in the making... implantable/wearable kidney for example...Unfortunately too late for my dad. No real improvement in dialysis for years, which is sad because as the public ages, more and more of us will experience kidney failure.

    • @lucygray6162
      @lucygray6162 4 ปีที่แล้ว +3

      I don't feel she sugar-coated anything. Dialysis may be rough, but without it, many people would be dead. I'm grateful we have the technology, I don't know what you consider elderly, but my sister is 64, a widow living alone, and lives a full life now that she is on home dialysis. She doesn't even want a transplant because of the drugs
      I also think some people need to own up to the fact that they put themselves there by noncompliance with diabetes (my sister), alcohol or drugs. It does catch up, with blindness, amputation and other horrors, and then we expect an instant fix. I wish people would take better care of themselves while they are young.

    • @galaxyearth60
      @galaxyearth60 ปีที่แล้ว +1

      There is always hope. For instance, new research shows that the kidneys are regenerating and repairing themselves throughout life. Contrary to long-held beliefs, a new study shows that kidneys have the capacity to regenerate themselves. I'm 62 years old, and this has happened to me after 8 months on dialysis, my kidneys are better and I'm off dialysis. When your kidney function starts to return, you'll start making urine, more and more as the weeks go by. Most doctors don't understand kidneys can get better, especially when a patient has acute kidney failure. And 4% to 10% of people are on dialysis who no longer need it. And they'll never know, because their doctors have a closed mind about kidney regeneration.

    • @mynameisyamell187
      @mynameisyamell187 ปีที่แล้ว +1

      @@galaxyearth60 What did you do to get out of Dialysis? I’ve changed my diet for months and my GFR doesn’t go past 15 unless I get dialysis in the hospital (20-25%)

  • @Fatmah-kc2eu
    @Fatmah-kc2eu 6 ปีที่แล้ว +1

    Oh my.... Pls does bionic kidney already avail... N is is true... To produce on it... I am still hearing on bionic kidney. Project but are actually when can launch this.... Pls pla make ut reality and asap for pupils like me are suffering dialysis hd for 9 years

  • @sohailasghar7392
    @sohailasghar7392 4 ปีที่แล้ว

    How can I get this machine in Pakistan???

  • @Iffy
    @Iffy 5 ปีที่แล้ว

    Does anyone know what her access method is? Does she have a fistula or lines?

    • @archerlady
      @archerlady 5 ปีที่แล้ว +3

      She seems to have a fistula or AV Graft in her right arm; the selfie with the machine has the lines on her right.

    • @Iffy
      @Iffy 5 ปีที่แล้ว

      @@archerlady Thanks for that!

  • @dr.soumyasworld1177
    @dr.soumyasworld1177 2 ปีที่แล้ว

    👏🏻👏🏻👏🏻

  • @davidallen4712
    @davidallen4712 6 ปีที่แล้ว +2

    God bless you. Why can't you have a transplant?

    • @JoseyTurn17
      @JoseyTurn17 5 ปีที่แล้ว +1

      Because of her autoimmune disease that attacked her own kidneys at the age of 13. Spoken of in a prior TedX talk.

    • @schoolemily1491
      @schoolemily1491 4 ปีที่แล้ว

      @@JoseyTurn17 is it like fsgs ?

  • @mamafylees3344
    @mamafylees3344 6 ปีที่แล้ว +3

    Blessings to you. What about love and marriage? I love a man on dialysis. He won't commit for fear of not being able to perform. How can I hope him? He LOVES ME AND I LOVE HIM. I WANT TO BE HIS WIFE. HE MAJES ME SO HAPPY JUST RGE WAY HE IS. He's been praying for God to give him at least 25 yrs to share his LOVE with me. I'm sadden that it won't happen.

    • @monicahazra2387
      @monicahazra2387 4 ปีที่แล้ว +1

      I wish ur dreams come true god bless I'm on dialysis for 13 yrs from india praying the same for me

  • @keepdreamin
    @keepdreamin 7 ปีที่แล้ว +5

    people don't need dialysis. people need an alternative. people need the Bionic Kidney

  • @insiyamohammed8686
    @insiyamohammed8686 2 ปีที่แล้ว

    what about a less appotunest country like Pakistan

  • @keepdreamin
    @keepdreamin 7 ปีที่แล้ว +12

    it's depressing when someone accepts dialysis. dialysis is wrong. over 30 million people are suffering on dialysis in America. they need an alternative. they need the Bionic Kidney

    • @kayantoinette
      @kayantoinette 7 ปีที่แล้ว +4

      keep dreamin please do tell where we can get this bionic kidney you speak of.

    • @keepdreamin
      @keepdreamin 7 ปีที่แล้ว +1

      the bionic kidney is available exclusively in san francisco

    • @212wen121
      @212wen121 7 ปีที่แล้ว +2

      The Bionic Kidney isn't available yet but trials are due to start at the end of this year. It sounds great but we'll have to wait and see how well it actually performs.

    • @kayantoinette
      @kayantoinette 6 ปีที่แล้ว

      Did I read that the bionic kidney will administer 24/7 dialysis via the peritoneal cavity? If so, that will not cover those who need hemo.

    • @peggyhakanson3139
      @peggyhakanson3139 6 ปีที่แล้ว

      My daughter needs peritoneal dialysis in the near future. She is seeing doctors at UCSF...they have not mentioned the bionic kidney...where in SF would she have to be treated to be offered this?

  • @normandeeley1463
    @normandeeley1463 3 ปีที่แล้ว

    Zero information about the subject.