I'm a dialysis patient doing peritoneal dialysis and can highly recommend it! On the machine overnight while I sleep, no needles, no blood. Working full time and just takes a little extra time per day for set up, clean up and taking care of my catheter.
It's great if it works. Unfortunately for me I kept getting blockages in the tubes so had to go onto hemo. I hate it so much. Been back on for 4 years praying for a transplant soon
@@chrism7249 it was a while ago. I believe it was fibrin though. Long white strands. I've always been an awkward patient. My neck line healed really fast and they had to cut it out, my fistula decided to narrow a week after first use. My only issue now really is the fact I really don't like needles
Great talk Maddy. I took the chance to dialyse at home in order to give me some control over my life and to allow me to continue to work although dialysing overnight wasn't put to me as an option. Luckily, just 11 months after starting dialysis, I received a transplant which is still going strong 12 years later.
Hello everyone! I’m on my dialysis preparation. They just put a tube on my belly and I’m very afraid that I can’t make it. I happen to see this video and I feel more relax now thank you 🙏
I'm also under dialysis for 2 years this sept. Its been so depressing but I have to be strong for my family, specially for my kids. I still want to see them grow.. and to my wife, I still want to hold her hand til im old. Reading some of the comments on this video, added hope in my life. Like the speaker, 17years on dialysis and it's amazing! Some are on their 10 years, and it's awesome! I want to live longer for my family and this gives me another reason to hope to live longer..
I'm praying for you as I pray every day for the people suffering from kidney disease. I have a channel here on UA-cam made just for people suffering from CKD. This is a disease that's taking a huge toll on the population and I feel that people suffering from it deserve all the help we can give them.
What a great message. I have been on dialysis since june 2021. i opted for the clinic because i have five children and just couldnt see how home dialysis would work with 5 kids around. I make the most of my time on dialysis by working. I've started my own youtube blog of my journey. I think it's so easy to let your illness consume you, this is something I'm determined not to happen. each of my children have a 50% chance of having this disease and I want to show them that you can still live a positive and happy life inspite of illness. I did a living donor appeal on Facebook that went viral and I'm hoping I will have a transplant soon and return to my nursing degree. I'm so happy that you have found a way to make the best of your life!!
Hello Ma'am! I am from India and my mother undergone kidney transplant in year 1997. After spending 20 years happily, her condition is again deteriorating. Doctors have said that she will need dialysis soon. To give her some some confidence, I asked her to see this video. She is happy about the fact that you are living your life cheerfully and she wishes you a happy life :)
RUDRA PRATAP SINGH SOLANKI rudra my father is having kidney problem and doctor is suggesting dialysis ...well u told that its been 20 years with transplant ..he transplant safe
I've been on dialysis for almost 4 years now. And I thank God for still giving the strength to work so I can support my treatment. Hoping that someday I will have a donor and finances for a transplant.
Good on you. Hope you're doing well now. I've been back on dialysis for 4 years now after a failed transplant. If I couldn't work I wouldn't know what to do
Thank you so much. I am a dialysis patient since June of 2017. I fight depression but listening to you and seeing your energy and vitality gives me such hope. I am trying to find the strength and purpose to live. I am struggling to have to depend upon my machine to survive. But listening to you, is so encouraging. What you are telling me us that their is life during dialysis. Again I say, thank you.
Thank you for sharing your inspiring story! What an awesome person and patient you are! I too am a home dialysis patient. I have lived with this disease for almost 40 years. I have had two transplants and in-between I have always dialyzed at home ( I lived in Scotland and now in Canada). I continue to work full time and live a reasonably active life. Home dialysis is empowering in that it makes YOU the steward of your own health and gives you more autonomy. Thank you for your advocacy in this arena and for being such an inspiring role model. Good health to you!
Hi there I hope you are well. It depends on your hospital's policy but I have been dialysing alone for over 10 years since I left home, with no problems. I secure the needles firmly with lots of tape and then a sticky dressing over them, and then tape the lines down across my hand and tape them all the way back up my arm to my shoulder so they are totally secure. For nocturnal dialysis you can get extra long lines which allow for the extra taping. Best wishes Maddy
Hi Melissa hope you are doing well! I agree a transplant is great freedom but for those who can't have one then home dialysis is the next best thing :) I hope your kidney is happy and healthy for many years. Best wishes Maddy
In addition to home hemodialysis there is the also the option of Peritoneal Dialysis which also works for a lot of dialysis patients and does not need a care partner (barring any other physical disabilities which might require one). It does not involve a fistula as access and no transfer of blood for treatments. This is some that I also recommend folks research and find out about to see if it might be option for your dialysis modality. It's also easy to travel on PD with either the manual process or the cycler (machine).
You are a brave girl. You bring hope to many including me. I am 71 year and just started my dialysis months ago. I am now receiving dialysis twice a week and was quite emotionally affected. Your talk bring me new hope just like seeing a rainbow in the tunnel of darkness. Thank you so much!
Thank you so much for this! I've been on home dialysis for a few years now and "love" it. Ofcourse I dont love to have dialysis, but being able to do this in the comfort of my home at night when i, try to, sleep is just plain awesome.I am sharing this video in hopes of people understanding why home dialysis is so important to me and so many others.
Maddy is my hero. I only did hemodialysis for 6 months and peritoneal dialysis for 2 months at home and that was the most miserable experience of my life. I lost all kidney function because they went into shock temporarily from GVHD after a bone marrow transplant for Leukemia. Of course I was already drained from the transplant and chemo. I felt so bad I couldn't even answer questions. I can't imagine having your kidneys removed and destroyed with no chance of using them again like Maddy. She's a tough lady like a Navy Seal. I know that from my own short experience.
@@noniemaula8675 Yes, my kidneys went into shock after I got a bone marrow transplant and got graft vs host disease. That's when your immune system attacks organs in your body. It's usually temporary but sometimes permanent damage. I was fortunate and function returned to about 60%. Not great but useable enough I don't need dialysis any longer.
I live in Tunbridge Wells and am receiving dialysis at the local centre here. My kidneys failed earlier this year. All the staff there are lovely and make the experience somewhat bare able.
Thank you for this. I have just found out that I need to start preparing for dialysis and I am 35. It’s really comforting to see someone thriving, working, travelling because I am so worried about how this is going to change my life.
i hope for more goodhealth to all the patients who are on dialysis, my mom will start her first dialysis tomorrow..hoping for good and positive treatment.
Hi, I am from India, my father has been in dialysis since 6 months. It would be really nice if the medical fraternity promotes home dialysis. The whole process of going to a dialysis unit is both energy draining and time consuming for the patient as well as the family members leaving apart the mental agony. It was really nice to come across your talk. 👍
Thank you Maddy for an inspiring speech. I am from Jamaica and has been on dialysis for 34 years now. ESRD can and will take a toll on your body but with great support and a positive mind set you can push. Wish i could meet you because your outlook living with this disease is amazing. All the best as we continue to thrive and live.
Thank you. I’m going to share this with someone who needs to hear it. They got the call yesterday that a kidney was available but due to other issues can’t get the transplant.
God Bless you for sharing your life story with others. My favorite Cousin passed away two years ago because she flat out refused to undergo Dialysis treatments, which were prescribed by her Doctor. Thank you for choosing Life!
I'm on dialysis. Just 41 and Kidneys failed. Issues were detected at 25 but then Kidneys improved. Told no need to see doctor but at 37 issues were detected again and ended up with old doctor. Flash forward I got worse and though I avoided dialysis for months the creatin abruptly worsened between March and June. I still was told it was borderline at the hospital and they discharged me without dialysis. Three weeks later despite changes and following advice I became ill and was back in hospital. They said I was worse and finally went on dialysis. Since March the creatine or creatinine rose from 3.1 to 6.5 then in July was 9.2. Now on dialysis.
Your story was amazing and inspirational. I currently do hemo dialysis and recently had surgery for peritoneal dialysis to do at home. I am praying and hoping that once I start peritoneal dialysis I have energy again and less hospital visits. Thank you for talking about what dialysis is, the procedure, and most importantly that dialysis is not a cure and an transplant will eventually be needed. I was really surprised to hear doing dialysis at home wasn't a big thing in the UK, I can't say it is hear in the US as well. Many dialysis patients are suggested to start with in center dialysis, and if chose to can do dialysis at home. I haven't met any one who chose to do in home dialysis as their first choice once they found out they would have to do dialysis, I would rather be in a center for 6 weeks to do training/dialysis verses until transplant. Please keep spreading awareness as many do not know about this disease or kidneys itself. God bless.
pl check in UA-cam many food supplements and Ayurveda medicines are there in UK and USA, they have treated many patients and they guarantee to cure with in 90 days can leave dialysis and kidney transplant, pl check in UA-cam god bless.
Awesome, Maddy. Thank you for sharing your perspective and I especially love your take that you are living on dialysis, not just surviving. Great attitude, not generally held by many. Have a great day.
This is such a wonderful inspiring video, thanks for taking the time to do this. I am 6 months into Hemo at hospital and your video is helping me make the right decision to try home hemo. When I doubt my decision I keep watching it! Thanks for being the inspiration that I was looking for but couldn't find. Best of luck to you and your health x
Hi Maddy, it was great to hear you talk about taking control of your dialysis, I've been on in center hemo now trice a week with 14g needles @ 600 pump speed, call me a mad man but I asked for the needles and still race motorcycles at 60+ years old, hang in there Maddy, we ain't dead yet!
Enjoyed your talk maddy and your positive attitude ive been on dialysis for 18 years so i know how hard it can be. I was bringing up two kids on my own when my kidneys failed so it was very hard at times but we managed. I had a transplant but it regected i needle myself and set the machine up at the renal unit so im thinking about having my dialysis at home now.
I did my first dialysis yesterday on 7 July 2021 and I don't feel anything different but little weakness after dialysis just for some time and now I am ok and have to go again after two days for second HD . I don't know how long will it work like this but I am going to try ayurvedic treatment too to revive my kidney and I pray for all other kidney patients out there GOD bless them all ❤️🙂
I admire your enthusiasm and positivity even in such adverse conditions..... You are lucky to be having personal machine... Here in india people die as they can't afford dialysis in private hospitals..... government hospital do not provide enough dialysis facilities .... Sorry this is not place to write all this but as this platform is about sharing personal experience...let me share some from my own experience.... my friend preferred to die after getting frustrated by having to spend so much for dialysis.... One old uncle wasn't affording so he let his grandson die instead... In our scenario poor people once diagnosed with ckd needing dialysis ... it's the end....
So sad many die in Diseases my heart is sad and feeling lonely but this is not the end God has a better plan for his children through his only Son Lord Jesus Christ.
u r an inspiration. i was diagnosed with esrd at 25 and I'm now 33 and have struggled with deep depression ever since. It definitely gets the best of me sometimes. My condition was also an auto-immune disorder. my dr. called it anca vasculitis which brought on the glumerlonephritis. I was other wise very healthy and so being young and this happened to me i was mad. I struggled and hated life and was so depressed. I did peritoneal dialysis for 6.5 years but during that time, I had 4 hernia surgery's around my catheter and by the time i had my 4th one i had my port pulled my adequacys weren't good and i was having alot of stomach issues.and so i had a fistula surgery but veins were to small and had to have another one in the upper part of my arm. Then a year later i had a paratyhroidectomy. I have developed bone problems and my hair has thinned and fell out. a number of things that go along with having renal failure. anyways u r a tru inspiration!!! It's hard dealing with this especially at young age and like i said ive struggled with depression and still do everyday. But u make me want to get out there and try. Thank u for sharing your story. I hope it inspires more people as u do me.
Amanda elrod976 hi im john i been in Dialisys for 20 years i just want to tell you to be positive you still got a whole life to live and im planing to be 50 years in Dialisys remember your mind is the stronger part of you god bless you and keep living
I had been on dialysis since I was 16 years old. Got a kidney transplant when I was 18 lasted 26 years (my personal experience) worse decision ever. Went back to dialysis in 2017 andI have learned to love dialysis. I used to be sick from everything else while I had the transplant. I have a very strict diet as long as I don't eat junk food I don't get thirsty and feel great. I wouldn't get another transplant to feel the side effects and be sick, always. My personal experience.
I I watched this video about 8 months ago right before I started dialysis just to learn more about it. now I've gone through the training and have been on home dialysis for about 6 months and I can relate so much more. I was very tempted to take the easy way out and just go in center (I know it's not easy either way). Going in center you just plug in and take a nap. But knowing what I know now I do agree that it's better to be involved in the process and take responsibility for what you can do to maintain your own health as best as you can!
Maddy, so glad that HHD has been working so well for you and you have made it part of your life to edcuate folks in the industry, the medical community and other patients about home dialysis options! I had 7 months of in center Hemo after being diagnosed un-expectedly with ESRD and then transferred over to PD after a HHD educator came around finally to ask if we knew about HHD options. My clinic at the time requiired a home care partner which I didn't have, but my neuphorologist cam back from vacay and told me I should be able to be a candidate on Peritoneal Dialysis and it's worked well for me the past 3 years on PD while being listed for transplant. The home dialysis is 100% far better for me and many to have that self control of schedule and treatments and the ability to do more work and travel has been so much better for me mentally and physically while dealing with this chronic illness that I don't feel I"m loosing out as much with my life and be content even if I am never able to get a kidney for transplant since the wait list is so long and extentsive and every increasing. Thanks again for doing this Ted Talk and being willing to share your experiences so openly with so many! You are an inspiration!
Thank you Kyle. I am really glad you were able to switch to PD and I agree with you that having control of your treatment and being able to work and travel is very important. I hope you stay well for many more years until you get a transplant!
@@queenofdialysis Hi Maddy! Trust you are doing great! I wanted to know your inputs on PD induced diabetes, hernia, menstrual issues etc etc. Kindly share your inputs. Many thanks
This was a very interesting and great talk! Thank you! I have a very similar story, my kidneys are failed in an autoimmun disease called FSGS, both of my kidneys are removed and I had two unsuccessful kidney transplant and I'm on dialysis since when I was 16. Now I'm 26 and I try to live a normal life, but in my country I have no possibility to home care HD, but the HD center is not too far from my home, so it's not a big problem for me. I had many problems with my veins, I had many stenosis, because I had central catheters, but right now, I have a good cimino fistula ( I hope it will work a long time ). :)
Please use your presence to get Drs and insurance companies ( mostly medicare here in USA) to start patients in the hospital on PD, (peritoneal dialysis) by placing the catheter and early education for patients and families during hospitalization and right after discharge instead of those capable willing souls being sent to hemodialysis clinics that now lack staff and supplies. Bless you. From a dialysis RN with decades of experience. You are a joy to behold! Free fall for us all 🌈🐦❤️
Thank you for this Maddy. My father currently visits a clinic 3 times a week for his dialysis sessions and feels down due to not being able to do the things he used to be able do on a day to day basis. Will definitely be telling him your story and the benefits of dialysis at home ! X
The kidneys failures can be cured, through supplements/Ayurveda treatment in India Punjab Dr Vikram's - check planet Ayurveda website, t Mere interviews in UA-cam, pl check
Thanks Maddy - six years on hospital dialysis and it consumes my life but I can't do home dialysis and am always tired but still positive xxxx Suzy - my brother was on home dialysis but died last year so it doesn't work for everyone :(
Very sorry to hear about your brother Suzy and sending you all good wishes - staying positive takes a lot of strength but you have a great attitude! Take care xx
My girlfriend is on dialysis we watched this together sometimes she gets upset about it and the difficulties of finding a new kidney but this made us feel alot better about it
Well it's certainly good she's doing all those activities. I'm almost a year and half on dialysis (10 months HD, the rest PD) and there is no way I could do any sports activity, i'm 37. I just cycle to work which I also cannot do full time. The tiredness always creeps up at noon and after work I basically sleep 2 to 3 hours.
Hey there how are you doing? I realised you commented a long time ago on my talk and I wanted to say that I totally understand how exhausting HD can be. The only way I am able to live an active normal life is by doing many many more hours on the machine but very slowly and gently, which is why I do 5-7 hours per night as it's the closest you can get to mimicking the work of the kidneys. Sending good wishes! Maddy
@@queenofdialysis starting traing to do home dyalsis Monday after PD failed last year. I work I work out I coach. I dont give up or complain lifes not easy. ❤
Inspirational talk and I love your passion. I experienced dialysis for the first time at 17 years old and never let it dictate my life - love winter sports too, but living in Australia it's all about water sports, so who says you can't do dialysis and wake board/kneeboard or jetski :-P Keep up the amazing work Maddy!
what she does not tell you of course is that for this talk she had to drain herself, otherwise that pretty dress would not have fitted her that way. Normally they walk around with litres of solution in their abdomen and it shows. I don't know why we are pretending that dialysis is all dandy. it is not. it is horrible but you have to make the best of it.
Great talk. Skydiving is something I would love to do once. For me I want to ride motorcycles. Dialysis did give me a bad right leg, its bent really bad at the knee, it's the opposite of being bow legged. It's painful but I can still ride because my left leg the leg needed to change the gears and stand up the bike is fine. I'm saving now to go take the riders class. It's a 2 full days class they teach you how to ride and safe riding techniques. If you pass you get a certificate you take to the dmv and they give you your biking license. Thats my choice of freedom, to ride. Love your story, we are both in the same shoes I guess you could say.
hello ma'am..i am from india..your story is really an inspiration..thanks a lot for sharing..my mother is on dialysis for a month now. She goes to a center for the dialysis process.I wanted to know more about home dialysis, does it require av fistula or not..pls reply
How did you get rid of the tube marks on your arms? How come you don't have any scar? My daughter has scars all over her arms and her body, I really appreciate if you gave me your secret of removing those scars, thanks!
My husband is suffering from kidney disease. But it is in the hands of my in laws to get a transplant for him .And they are so rich but tell they don't get a donor.
My uncle was on dialysis and he used to have these huge inflammations or cyst on his needle spot... are these needle spot cyst/inflammation commonly happen to people who are on dialysis??
This time since 21 years old... 6.5 years on home hemo, but I do a little over 2 hours 5 times a week. I think overnight is pretty interesting. Does it interfere with sleep though?
Hi Leslie - you learn to sleep with it so after a few months you should find it pretty normal to dialyse overnight and it means you don't waste any time in the day and can do many more hours :)
Just found out that my mom have this and it's killing me I don't know how to deal with it my biggest problem is the fact that she just move to the us and we have no insurance coverage for her
Is dialysis a forever treatment? My dad is going 4 months now. I always feel sad coz i am helpless coz i also has a disease, i am immunocompromised person. Is there a chance the kidney will heal itself?
I'm a dialysis patient doing peritoneal dialysis and can highly recommend it! On the machine overnight while I sleep, no needles, no blood. Working full time and just takes a little extra time per day for set up, clean up and taking care of my catheter.
It's great if it works. Unfortunately for me I kept getting blockages in the tubes so had to go onto hemo. I hate it so much. Been back on for 4 years praying for a transplant soon
@@benlarge1984 What was causing the blockage if you don't mind me asking, Was it fibrin? I have just started manual PD whilst my machine arrives
@@chrism7249 it was a while ago. I believe it was fibrin though. Long white strands. I've always been an awkward patient. My neck line healed really fast and they had to cut it out, my fistula decided to narrow a week after first use. My only issue now really is the fact I really don't like needles
@@chrism7249 you get so much more freedom with pd I wish I could still do it. ( Other than wishing for a kidney lol)
I pray strength for anyone passing through this.
Thank you
God is able i'm sad knowing people suffering from pain and suffering may God heal us all through his only son Lord Jesus Christ.
thanks behalf of plenty kidney failure the comments are a bountiful blessing for us
Looking at the comment section makes me think how brave each one of you is including the speaker ! HATS OFF TO ALL YOU GUYS ! ♥️
Great talk Maddy. I took the chance to dialyse at home in order to give me some control over my life and to allow me to continue to work although dialysing overnight wasn't put to me as an option. Luckily, just 11 months after starting dialysis, I received a transplant which is still going strong 12 years later.
hope your kidney is still ok
Hi Rob, what kidney disease did you have
Great news, Rob. I hope all is still well.
Love you mang, great to hear.
hi I am a dialysis patient for 10 years now and seeing your story make me feel alive thank you for sharing!
Stil now
Hello everyone! I’m on my dialysis preparation. They just put a tube on my belly and I’m very afraid that I can’t make it. I happen to see this video and I feel more relax now thank you 🙏
I'm also under dialysis for 2 years this sept. Its been so depressing but I have to be strong for my family, specially for my kids. I still want to see them grow.. and to my wife, I still want to hold her hand til im old. Reading some of the comments on this video, added hope in my life. Like the speaker, 17years on dialysis and it's amazing! Some are on their 10 years, and it's awesome! I want to live longer for my family and this gives me another reason to hope to live longer..
my name is Andrew and i am willing to Donate my Kidney, anyone who is in need of it can call me here please 081 835 2860
Garfild Jaspe just fight and you will make it! 😉
Life is too short let's be greafull we're still alive and on dialysis
I'm praying for you as I pray every day for the people suffering from kidney disease. I have a channel here on UA-cam made just for people suffering from CKD. This is a disease that's taking a huge toll on the population and I feel that people suffering from it deserve all the help we can give them.
How to get in touch with you....
@@yogeshbalhara6341 if you click on her user name it will go to her channel
@The Girl Who Speaks hit on her name to go to her videos
What a great message.
I have been on dialysis since june 2021. i opted for the clinic because i have five children and just couldnt see how home dialysis would work with 5 kids around. I make the most of my time on dialysis by working.
I've started my own youtube blog of my journey. I think it's so easy to let your illness consume you, this is something I'm determined not to happen. each of my children have a 50% chance of having this disease and I want to show them that you can still live a positive and happy life inspite of illness. I did a living donor appeal on Facebook that went viral and I'm hoping I will have a transplant soon and return to my nursing degree.
I'm so happy that you have found a way to make the best of your life!!
Hello Ma'am! I am from India and my mother undergone kidney transplant in year 1997. After spending 20 years happily, her condition is again deteriorating. Doctors have said that she will need dialysis soon. To give her some some confidence, I asked her to see this video. She is happy about the fact that you are living your life cheerfully and she wishes you a happy life :)
Thank you! I hope your mum is feeling well and I also wish her a happy life too! :)
RUDRA PRATAP SINGH SOLANKI rudra my father is having kidney problem and doctor is suggesting dialysis ...well u told that its been 20 years with transplant ..he transplant safe
RUDRA PRATAP SINGH SOLANKI please reply me ....its really the need of the hour to get opinions
I've been on dialysis for almost 4 years now. And I thank God for still giving the strength to work so I can support my treatment. Hoping that someday I will have a donor and finances for a transplant.
Good on you. Hope you're doing well now. I've been back on dialysis for 4 years now after a failed transplant. If I couldn't work I wouldn't know what to do
I have stage 5 kidney disease I haven’t started dialysis I am scared.
You are one brave woman you were one brave child.
Are you in dialysis right now?
@@mrinvestor1932
Not yet. In August I have surgery to put my fistula in.
Thank you so much. I am a dialysis patient since June of 2017. I fight depression but listening to you and seeing your energy and vitality gives me such hope.
I am trying to find the strength and purpose to live. I am struggling to have to depend upon my machine to survive.
But listening to you, is so encouraging. What you are telling me us that their is life during dialysis. Again I say, thank you.
🙏 you are still hanging in there.
You are a brave girl. I've been on dialysis since 2012. It's just a part of my life now.
So u got used to it ?
What a inspiration you are...thank you from another hemo dialysis patient.
Thank you for sharing your inspiring story! What an awesome person and patient you are! I too am a home dialysis patient. I have lived with this disease for almost 40 years. I have had two transplants and in-between I have always dialyzed at home ( I lived in Scotland and now in Canada). I continue to work full time and live a reasonably active life. Home dialysis is empowering in that it makes YOU the steward of your own health and gives you more autonomy. Thank you for your advocacy in this arena and for being such an inspiring role model. Good health to you!
Great speech dear I myself a kidney patient for ten years and still rocking in the machin. never give up my fellow comrades.
i am a kidney transplant patient and i higly recommend to get a kidney ASAP, the machine isnt comparable to a kidney.. kidney = freedom
Hi there I hope you are well. It depends on your hospital's policy but I have been dialysing alone for over 10 years since I left home, with no problems. I secure the needles firmly with lots of tape and then a sticky dressing over them, and then tape the lines down across my hand and tape them all the way back up my arm to my shoulder so they are totally secure. For nocturnal dialysis you can get extra long lines which allow for the extra taping. Best wishes Maddy
Hi Melissa hope you are doing well! I agree a transplant is great freedom but for those who can't have one then home dialysis is the next best thing :) I hope your kidney is happy and healthy for many years. Best wishes Maddy
7 years here- 31-38....grace of God.
In addition to home hemodialysis there is the also the option of Peritoneal Dialysis which also works for a lot of dialysis patients and does not need a care partner (barring any other physical disabilities which might require one). It does not involve a fistula as access and no transfer of blood for treatments. This is some that I also recommend folks research and find out about to see if it might be option for your dialysis modality. It's also easy to travel on PD with either the manual process or the cycler (machine).
You are a brave girl. You bring hope to many including me. I am 71 year and just started my dialysis months ago. I am now receiving dialysis twice a week and was quite emotionally affected. Your talk bring me new hope just like seeing a rainbow in the tunnel of darkness. Thank you so much!
Two transplants and back on a machine again. This woman is amazing.
Thank you so much for this! I've been on home dialysis for a few years now and "love" it. Ofcourse I dont love to have dialysis, but being able to do this in the comfort of my home at night when i, try to, sleep is just plain awesome.I am sharing this video in hopes of people understanding why home dialysis is so important to me and so many others.
great talk Maddy. I'm a male nurse working in dialysis unit in Sri Lanka. I also need to join with you and your society to help people.
Maddy is my hero. I only did hemodialysis for 6 months and peritoneal dialysis for 2 months at home and that was the most miserable experience of my life. I lost all kidney function because they went into shock temporarily from GVHD after a bone marrow transplant for Leukemia. Of course I was already drained from the transplant and chemo. I felt so bad I couldn't even answer questions. I can't imagine having your kidneys removed and destroyed with no chance of using them again like Maddy. She's a tough lady like a Navy Seal. I know that from my own short experience.
so you gain your kidney function back after 8 months?
@@noniemaula8675 Yes, my kidneys went into shock after I got a bone marrow transplant and got graft vs host disease. That's when your immune system attacks organs in your body. It's usually temporary but sometimes permanent damage. I was fortunate and function returned to about 60%. Not great but useable enough I don't need dialysis any longer.
praying for you, i am kidney transplant patient... i pray for your fistula
Thank you for sharing this video, so nice to see someone so positive and living life to the fullest!
Am on dialysis 11years now am from Jamaica
I live in Tunbridge Wells and am receiving dialysis at the local centre here. My kidneys failed earlier this year. All the staff there are lovely and make the experience somewhat bare able.
From a surfer on dialysis ,keep going strong
Respect
As a peritoneal dialysis patient , this young lady is such a wonderful representation of the life one can have dialyzing at home.
Thank you for this. I have just found out that I need to start preparing for dialysis and I am 35. It’s really comforting to see someone thriving, working, travelling because I am so worried about how this is going to change my life.
i hope for more goodhealth to all the patients who are on dialysis, my mom will start her first dialysis tomorrow..hoping for good and positive treatment.
Hi, I am from India, my father has been in dialysis since 6 months. It would be really nice if the medical fraternity promotes home dialysis. The whole process of going to a dialysis unit is both energy draining and time consuming for the patient as well as the family members leaving apart the mental agony.
It was really nice to come across your talk. 👍
Hi Kaustav , How have you been ? hows the dialysis going on?
Thank you Maddy for an inspiring speech. I am from Jamaica and has been on dialysis for 34 years now. ESRD can and will take a toll on your body but with great support and a positive mind set you can push. Wish i could meet you because your outlook living with this disease is amazing. All the best as we continue to thrive and live.
Hi Lorraine I'm also from jamaica and it's been 3weeks now since I've been diagnosed been on dialysis for 2 weeks now
@Lorraine Royes- Hello ,how are you doing now?
@@shelekiabrown3831 so sorry to hear. Stick to your diet get rest take your meds and do not miss your treatment sessions.
Wishing you all the best.
Amazing! Thank you so much for sharing your story.
you are an inspiration Maddy. Thank You For Sharing
I'm a dialysis patient for 19 years now and my bones are already half-eaten.
Thank you. I’m going to share this with someone who needs to hear it. They got the call yesterday that a kidney was available but due to other issues can’t get the transplant.
Where is this kidney available?
God Bless you for sharing your life story with others. My favorite Cousin passed away two years ago because she flat out refused to undergo Dialysis treatments, which were prescribed by her Doctor. Thank you for choosing Life!
That was a very inspiring and helpful talk. Thank you very much.
I'm on dialysis. Just 41 and Kidneys failed. Issues were detected at 25 but then Kidneys improved. Told no need to see doctor but at 37 issues were detected again and ended up with old doctor. Flash forward I got worse and though I avoided dialysis for months the creatin abruptly worsened between March and June. I still was told it was borderline at the hospital and they discharged me without dialysis. Three weeks later despite changes and following advice I became ill and was back in hospital. They said I was worse and finally went on dialysis. Since March the creatine or creatinine rose from 3.1 to 6.5 then in July was 9.2. Now on dialysis.
Thank you for this presentation. You were an inspiration for my mom to start dialysis. It saved her life.
Thank you. Very inspiring.
thank you for talking to us about dialyse at home, your a very good woman, please never give up,
Your story was amazing and inspirational. I currently do hemo dialysis and recently had surgery for peritoneal dialysis to do at home. I am praying and hoping that once I start peritoneal dialysis I have energy again and less hospital visits. Thank you for talking about what dialysis is, the procedure, and most importantly that dialysis is not a cure and an transplant will eventually be needed. I was really surprised to hear doing dialysis at home wasn't a big thing in the UK, I can't say it is hear in the US as well. Many dialysis patients are suggested to start with in center dialysis, and if chose to can do dialysis at home. I haven't met any one who chose to do in home dialysis as their first choice once they found out they would have to do dialysis, I would rather be in a center for 6 weeks to do training/dialysis verses until transplant. Please keep spreading awareness as many do not know about this disease or kidneys itself. God bless.
pl check in UA-cam many food supplements and Ayurveda medicines are there in UK and USA, they have treated many patients and they guarantee to cure with in 90 days can leave dialysis and kidney transplant, pl check in UA-cam god bless.
Krishnamurthy Balan scam bruh
Awesome, Maddy. Thank you for sharing your perspective and I especially love your take that you are living on dialysis, not just surviving. Great attitude, not generally held by many. Have a great day.
This is such a wonderful inspiring video, thanks for taking the time to do this. I am 6 months into Hemo at hospital and your video is helping me make the right decision to try home hemo. When I doubt my decision I keep watching it! Thanks for being the inspiration that I was looking for but couldn't find. Best of luck to you and your health x
Hi Maddy, it was great to hear you talk about taking control of your dialysis, I've been on in center hemo now trice a week with 14g needles @ 600 pump speed, call me a mad man but I asked for the needles and still race motorcycles at 60+ years old, hang in there Maddy, we ain't dead yet!
Brave young woman....really admire your courage.
That was a very nice talk. I truly admire the perspective shift. Live life as there’s no tomorrow.
Thank you so much for sharing your story. You are such an inspiration to others. God Bless you!
Enjoyed your talk maddy and your positive attitude ive been on dialysis for 18 years so i know how hard it can be. I was bringing up two kids on my own when my kidneys failed so it was very hard at times but we managed. I had a transplant but it regected i needle myself and set the machine up at the renal unit so im thinking about having my dialysis at home now.
I did my first dialysis yesterday on 7 July 2021 and I don't feel anything different but little weakness after dialysis just for some time and now I am ok and have to go again after two days for second HD . I don't know how long will it work like this but I am going to try ayurvedic treatment too to revive my kidney and I pray for all other kidney patients out there GOD bless them all ❤️🙂
Hi, how are you now? Any Ayurveda treatment you tried?
I admire your enthusiasm and positivity even in such adverse conditions.....
You are lucky to be having personal machine...
Here in india people die as they can't afford dialysis in private hospitals.....
government hospital do not provide enough dialysis facilities ....
Sorry this is not place to write all this but as this platform is
about sharing personal experience...let me share some from my own experience....
my friend preferred to die after getting frustrated by having to spend so much for dialysis....
One old uncle wasn't affording so he let his grandson die instead...
In our scenario poor people once diagnosed with ckd needing dialysis ... it's the end....
So sad many die in Diseases my heart is sad and feeling lonely but this is not the end God has a better plan for his children through his only Son Lord Jesus Christ.
Sorry for the pain of difficult choice some people have to make. May we all help each other in this world.
Thats awful :(
Shifty is the word I would give it, but You are Fearfully and Wonderfully Made!!!
u r an inspiration. i was diagnosed with esrd at 25 and I'm now 33 and have struggled with deep depression ever since. It definitely gets the best of me sometimes. My condition was also an auto-immune disorder. my dr. called it anca vasculitis which brought on the glumerlonephritis. I was other wise very healthy and so being young and this happened to me i was mad. I struggled and hated life and was so depressed. I did peritoneal dialysis for 6.5 years but during that time, I had 4 hernia surgery's around my catheter and by the time i had my 4th one i had my port pulled my adequacys weren't good and i was having alot of stomach issues.and so i had a fistula surgery but veins were to small and had to have another one in the upper part of my arm. Then a year later i had a paratyhroidectomy. I have developed bone problems and my hair has thinned and fell out. a number of things that go along with having renal failure. anyways u r a tru inspiration!!! It's hard dealing with this especially at young age and like i said ive struggled with depression and still do everyday. But u make me want to get out there and try. Thank u for sharing your story. I hope it inspires more people as u do me.
Hi Amanda wishing you all the best and I hope are doing OK. You have had a tough time, stay strong and take one day at a time!
Amanda elrod976
hi im john i been in Dialisys for 20 years i just want to tell you to be positive you still got a whole life to live and im planing to be 50 years in Dialisys remember your mind is the stronger part of you god bless you and keep living
aj elrod 976- Hello how are you now?
@@johntorres1632 God bless you 🙏🏾💚
God bless you 🙏🏾💚
I had been on dialysis since I was 16 years old. Got a kidney transplant when I was 18 lasted 26 years (my personal experience) worse decision ever. Went back to dialysis in 2017 andI have learned to love dialysis. I used to be sick from everything else while I had the transplant. I have a very strict diet as long as I don't eat junk food I don't get thirsty and feel great. I wouldn't get another transplant to feel the side effects and be sick, always. My personal experience.
I I watched this video about 8 months ago right before I started dialysis just to learn more about it. now I've gone through the training and have been on home dialysis for about 6 months and I can relate so much more. I was very tempted to take the easy way out and just go in center (I know it's not easy either way). Going in center you just plug in and take a nap. But knowing what I know now I do agree that it's better to be involved in the process and take responsibility for what you can do to maintain your own health as best as you can!
Congrats on starting home dialysis I am very glad you decided to take that option and to go through the training. Best wishes to you!
my name is Andrew and i am willing to Donate my Kidney, anyone who is in need of it can call me here please 081 835 2860
I'm also a dialysis patient for 8 months and it's been so depressing
Aww I’m so sorry to hear that feel better my angel ❤
Maddy is awesome!
Maddy, so glad that HHD has been working so well for you and you have made it part of your life to edcuate folks in the industry, the medical community and other patients about home dialysis options! I had 7 months of in center Hemo after being diagnosed un-expectedly with ESRD and then transferred over to PD after a HHD educator came around finally to ask if we knew about HHD options. My clinic at the time requiired a home care partner which I didn't have, but my neuphorologist cam back from vacay and told me I should be able to be a candidate on Peritoneal Dialysis and it's worked well for me the past 3 years on PD while being listed for transplant. The home dialysis is 100% far better for me and many to have that self control of schedule and treatments and the ability to do more work and travel has been so much better for me mentally and physically while dealing with this chronic illness that I don't feel I"m loosing out as much with my life and be content even if I am never able to get a kidney for transplant since the wait list is so long and extentsive and every increasing.
Thanks again for doing this Ted Talk and being willing to share your experiences so openly with so many! You are an inspiration!
Thank you Kyle. I am really glad you were able to switch to PD and I agree with you that having control of your treatment and being able to work and travel is very important. I hope you stay well for many more years until you get a transplant!
@@queenofdialysis Hi Maddy! Trust you are doing great! I wanted to know your inputs on PD induced diabetes, hernia, menstrual issues etc etc. Kindly share your inputs. Many thanks
This was a very interesting and great talk! Thank you!
I have a very similar story, my kidneys are failed in an autoimmun disease called FSGS, both of my kidneys are removed and I had two unsuccessful kidney transplant and I'm on dialysis since when I was 16. Now I'm 26 and I try to live a normal life, but in my country I have no possibility to home care HD, but the HD center is not too far from my home, so it's not a big problem for me. I had many problems with my veins, I had many stenosis, because I had central catheters, but right now, I have a good cimino fistula ( I hope it will work a long time ). :)
In Sha Allah
Please use your presence to get Drs and insurance companies ( mostly medicare here in USA) to start patients in the hospital on PD, (peritoneal dialysis) by placing the catheter and early education for patients and families during hospitalization and right after discharge instead of those capable willing souls being sent to hemodialysis clinics that now lack staff and supplies. Bless you. From a dialysis RN with decades of experience. You are a joy to behold! Free fall for us all 🌈🐦❤️
Thank you
Wow! Very inspiring! And you look super healthy!!!!! Thanks for sharing your story!
3:02 very true... God bless you ❤
Thank you for this Maddy. My father currently visits a clinic 3 times a week for his dialysis sessions and feels down due to not being able to do the things he used to be able do on a day to day basis. Will definitely be telling him your story and the benefits of dialysis at home ! X
The kidneys failures can be cured, through supplements/Ayurveda treatment in India Punjab Dr Vikram's - check planet Ayurveda website, t Mere interviews in UA-cam, pl check
Patient will die
@@krishnamurthybalan4974 biggest scam planet ayurveda, I tried all ayurveda in india. No one can cure ckd
I pray for my man Jerome to be strengthen and leave to witness more life in good health
Great Maddy!
Thanks Maddy - six years on hospital dialysis and it consumes my life but I can't do home dialysis and am always tired but still positive xxxx Suzy - my brother was on home dialysis but died last year so it doesn't work for everyone :(
Very sorry to hear about your brother Suzy and sending you all good wishes - staying positive takes a lot of strength but you have a great attitude! Take care xx
My girlfriend is on dialysis we watched this together sometimes she gets upset about it and the difficulties of finding a new kidney but this made us feel alot better about it
God bless u .. U r the best
Hi maddy...how often are you doing dialysis at home ? Is it 2 times a day or so ?
Well it's certainly good she's doing all those activities. I'm almost a year and half on dialysis (10 months HD, the rest PD) and there is no way I could do any sports activity, i'm 37. I just cycle to work which I also cannot do full time. The tiredness always creeps up at noon and after work I basically sleep 2 to 3 hours.
Hey there how are you doing? I realised you commented a long time ago on my talk and I wanted to say that I totally understand how exhausting HD can be. The only way I am able to live an active normal life is by doing many many more hours on the machine but very slowly and gently, which is why I do 5-7 hours per night as it's the closest you can get to mimicking the work of the kidneys. Sending good wishes! Maddy
@@queenofdialysis starting traing to do home dyalsis Monday after PD failed last year. I work I work out I coach. I dont give up or complain lifes not easy. ❤
@@edwardmichalo1921 Hello, are you still on PD?
Inspirational talk and I love your passion. I experienced dialysis for the first time at 17 years old and never let it dictate my life - love winter sports too, but living in Australia it's all about water sports, so who says you can't do dialysis and wake board/kneeboard or jetski :-P Keep up the amazing work Maddy!
I love your attitude Michelle! Scuba diving is next on my list :)
although I liked the video... makes me feel ... kinda ...that I'm not alone... and there are so many possibilities out there...
what she does not tell you of course is that for this talk she had to drain herself, otherwise that pretty dress would not have fitted her that way. Normally they walk around with litres of solution in their abdomen and it shows. I don't know why we are pretending that dialysis is all dandy. it is not. it is horrible but you have to make the best of it.
Great talk. Skydiving is something I would love to do once. For me I want to ride motorcycles. Dialysis did give me a bad right leg, its bent really bad at the knee, it's the opposite of being bow legged. It's painful but I can still ride because my left leg the leg needed to change the gears and stand up the bike is fine. I'm saving now to go take the riders class. It's a 2 full days class they teach you how to ride and safe riding techniques. If you pass you get a certificate you take to the dmv and they give you your biking license. Thats my choice of freedom, to ride. Love your story, we are both in the same shoes I guess you could say.
1:46 Brief explanation of the importance of the kidney.
How long have you been on dialysis? I’m watching your video now. It’s very educational.
Life is different when you're dependant on the pension.
Cheers from India...
That's strange. This autoimmune disease she has, seems to be the same thing that happened to me, my sis and my dad. All our kidneys failed at age 15.
She is beautiful I hope she’s doing well now
hello ma'am..i am from india..your story is really an inspiration..thanks a lot for sharing..my mother is on dialysis for a month now. She goes to a center for the dialysis process.I wanted to know more about home dialysis, does it require av fistula or not..pls reply
How did you get rid of the tube marks on your arms? How come you don't have any scar? My daughter has scars all over her arms and her body, I really appreciate if you gave me your secret of removing those scars, thanks!
Very informative and sweet looking too.
I love that photo of the cat haaa haaa such a legendary creature that will not be told lol....!!!
Great Thanks. Do you think home PD dialysis can take off water retention as hemodialysis can? I heard it is not possible for home one.
amazing talk. 👍👍😀
Fabulous and Super...!
My husband is on dialysis and we are struggling to raise fund and get him on transplant. Its really really difficult time to pass through
My husband is suffering from kidney disease. But it is in the hands of my in laws to get a transplant for him .And they are so rich but tell they don't get a donor.
So, why the hemo machine over peritoneal?
My uncle was on dialysis and he used to have these huge inflammations or cyst on his needle spot... are these needle spot cyst/inflammation commonly happen to people who are on dialysis??
Hate seeing my gf go thru this SO MUCH... 15 years..
WOW Respect.
This time since 21 years old... 6.5 years on home hemo, but I do a little over 2 hours 5 times a week. I think overnight is pretty interesting. Does it interfere with sleep though?
Hi Leslie - you learn to sleep with it so after a few months you should find it pretty normal to dialyse overnight and it means you don't waste any time in the day and can do many more hours :)
Leslie Lynn can you please send me as much information on the hemodyaliss machine as I going to be using it soon. From Pamela Rothman
@@queenofdialysis Hi Maddy! Is it the same machine which is used at the clinic?
Just found out that my mom have this and it's killing me I don't know how to deal with it my biggest problem is the fact that she just move to the us and we have no insurance coverage for her
Fanfan Joachim in the US if someone needs to go on dialysis, the government pays for it.
I am so afraid that I will lose my mom
Is dialysis a forever treatment? My dad is going 4 months now. I always feel sad coz i am helpless coz i also has a disease, i am immunocompromised person. Is there a chance the kidney will heal itself?
@Mr.Houston's class ;)
Can I be in touch with you please.i am on dialysis