No matter which medical avenue an ESRD patient decides to take, your personal experiences and exhortations with CKD are priceless. Concerns for family and how they'll be affected by ESRD, especially, weight heavily and I'm so thankful you spoke of it. I'm quite old and made the decision for Conservative Care Management several years ago, but I've been drawn to your videos because you speak to the realities of coping with kidney disease. I've always rather have known the truth than run from it, and (imo), you are superb at helping folks to understand not only PD, but the challenges of dialysis in general. Thank you forever for all the time you put into your videos. They give folks a clearer vision of what seems quite murky in dialysis. I'll continue to watch your videos and hold you in the highest regard. The hope your insights bring into people's lives is invaluable also. Many, many thanks. I wish you and your family all the best.
U r fantastic. I am now at stage 4 failure and expect to be on dialysis sooner than later. You sharing your experience has been very helpful. Thankfully as a Canadian all costs that I have and will be faced with are paid for by the Canadian Kidney foundation. Very fortunate indeed. Good luck to you and best wishes to u and family
Thank you for your valuable and helpful videos, am crying 😭 you've described exactly how I'm feeling and it's ok to give myself permission to feel what I'm feeling. I love God and know He's holding me, but some days are so much harder than others. And it's hard to find someone to talk to, who understands. So thank you 🤗❤️🙏
I unfortunately felt awful for probably the first 6 months on PD and still only feel so so. I have had cousins say my skin looks so much better!. I had no idea that it didn't!.
Thank you, the perspective, feeling, you so beautifully express is most helpful. I know It does help to feel grateful, but when I’m low I don’t want to complain and retreat inside. Thanks for sharing these thoughts. With much appreciation, Mary(6 months on PD and feeling better often🌺)
I have compassion for the way you or anybody would normally look at the situation at hand currently with kidney failure. The first thing I would want to do is escape the rough edges. My wife passed away from chemotherapy trying to treat the cancer. Fortunately we were able to understand a life-changing book material written by a Eckhart Tolle called, The Power of Now. It helps tame the conditioning of how we feel we're supposed to get somewhere better than where we are with a life-threatening problem. Also, it can curb the anxiety of the future for anyone.💜
I just wish I could hug you back to perfect health. I have not seen anyone on this journey that has as strong a drive to persevere no matter what ones diagnosis may be. You truly are loved❤ by many of us. Every moment you are with your family is a Blessing for you all and each moment is a New Win for you! Please feel my Mama Bear Hug all the way from NC. YOU are helping so many out here by your candor; your truth, and those tips are just reminiscent of the commandments when things change. You are an AMAZING Soul.❤
I appreciate you sharing your emotional experiences. Really, our feelings involving these scenarios are the experience we have. Shining light on the darkness in our thoughts and feelings is how it’s dispelled. Society teaches us not be vocal about feelings and it handicaps a lot people during hard times.
I have gone through most of the emotional challenges you describe on my road to dialysis. One thing I found hard, but eventually came to terms with, was the realization I could not control my health. Diet, exercise, etc. can be helpful, but my kidneys were going to fail no matter what. Just accepting something happening to me (kidney failure) was beyond my control took a lot of time and effort. I am glad you touched on anger and bitterness about what life could’ve been before kidney failure. I held in a lot of anger and bitterness, until I learned to let go and accept there things affecting my body beyond my control. Thank you for this amazing video, and channel.
Thanks for making this video , it really helped me and touched my feelings as I’m on this journey and not a talker , I am lost in the fog for sure but comforted to know not alone . Uk Lee
You are a strong woman and an inspiration. .What you have shared is so honest and practical. I pray that you will see the help of the Lord in every way as you call upon His name.
Good to see another video. My psychiatric nurse is watching you now. She gives me my prolixin shot every two weeks. I have been lucky! My test came back and I only have to do peritoneal dialysis 5nights a week. I get to sleep with my wife and cat every Friday and Monday night. See how long that it last? Everything going well with dialysis. I applied for a job driving for a medical transportation company. I told them I’m on dialysis. She if they hire me? Keep up the fight and see you soon.
This is such a great video..... I'm dealing with all this.... I feel like no one will understand all these emotions because I don't know anyone else dealing with severe kidney failure. I cried... just knowing someone else there understands and pushed through it is hope.
Thank you for making this video. I’m close to taking this journey and everything you touch on is very, very real to me. I’m really not weathering this well. All I see is a long, dark, painful tunnel with a bad ending. IgA Nephropathy is my kidney disease and although I have other health issues that I’ve been able to address and manage, the kidney failure is just too much. I’ve lived with this disease since being diagnosed at 9 years of age. My IgA has been intermittent and throughout my life only occasionally raised its head because of a respiratory infection and then calmed down and basically disappeared, which it does but nobody had ever told me that. Then at 57 years the decline started and this time did not stop. It was slow at first but in the last two years has gained momentum. I’m now 63years and I believe at Stage 3 or 4 but my numbers are so erratic I can’t be sure and this of course brings in uncertainty. I will go on dialysis, but when? Now I have the money to do the things I actually looked forward to such as overseas travel, but it maybe too late. Do I have enough time left? Initially my GP was of little help and sent me to a Nephrologist who didn’t seem overly concerned and sent me on my way with no additional medications. This is when I got mad because I knew there was something seriously wrong. I went to another Nephrologist that immediately put me on meds to lower my protein spill and immunosuppressants, to slow the IgA protein being released and a diuretic to extract water from my blood. I was already on high blood pressure and cholesterol meds, because of my age and the other conditions. He instructed me what to do to slow the decline. Why the hell had the other doctors failed to do this? I now know GPs know little about IgA treatment but I needed a competent Nephrologist and the first one I got was no help and if he was good could have done what the second Neph had done. All the evidence was there. I’m angry, worried and depressed but your video has made me aware of what to expect. Most of the other videos are of happy, smiling patients hooked up with their happy smiling nurses checking the machine. They are like ads for washing powder or toothpaste. Everybody’s happy…and it’s all bullshit. It’s bloody miserable.
I'm rooting for you my dear. I appreciate your videos so much. You're so brave to put it out there. I've lost 2 family members to kidney failure. One did dialysis, one did not. Like I said, I'm rooting for you. Thank you
You have such a touching way of expressing what alot of us are feeling. Thank you for putting yourself out there and sharing your thoughts and your journey 💚❤
I do not know if or when I may need dialysis, but my father was on peritonial dialysis 43 years ago, when it involved a huge machine and hours of being 'hooked up'. I have a brother that is doing hemo, and I am watching and processing all your videos so that I can make an informed decision should it become somethng I need to consider. I want to tell you thank you for being so transparent and for sharing YOUR JOURNEY... I know that everyone's journey is different, but you are really helping this farm wife from a small town. *U* Kathleen
It’s amazing how I learned so much from your videos. If you weren’t there at my training for PD I may not have survived it. Everyone is so impressed at my learning of doing the dialysis but without you it wouldn’t have been so good. The doctor was watching me closely. Can I do hemodialysis at home someday? That’s a whole different game. Thank you so much!!!
I'm so glad I came across this video I recently started and I'm feeling all these things I only started in July this year and I was only diagnosed a year ago so it's hard thank you for posting
Everything you speak is soo True.ive.i am soo sick & tired Every single day.I feel like a burden on my Husband.. i have been on the dreaded D for 18 years now and I am now contemplating Euthanasia.I just cannot handle it anymore.😢.
Ty for this video. I have stage 4. I’m struggling with the emotional part. And with the part of getting it thru to my family that this is not a cold I’ll get over it I’ve been told by my son he didn’t wanna talk bout it that I’ll be fine. And my mom avoids the topic all together. Family always called me a hypochondriac all my life, I wonder if they think I’m faking this,
Well, they took me off dialysis 2nights a week. Of course my heart was surrounded by fluid and lungs too. After 5days in a Rochester hospital, I have been relegated to 12hours a day peritoneal dialysis.
Thank you for this video! I have been on hemodialysis for about 5 months. A week from tomorrow I will have s PD cath placed. I’m really scared about infection. I am not a clean person and I have a lot of cats. I’m really worried. How common are infections? I’m 53 so being clean/ sterile isn’t in my wheel house as they say. You may never see this because this video was made months ago. But on the off chance… here I am.
Good video. Feeling a lot of these things. Were you able to work still? My doc told me Medicare takes care of all expenses. If not, we cannot afford this without my income. I hope she's right. Hoping I can still garden, too. Many unknowns.
I've been on dialysis for the last 10 years and I too have been sharing my journey "I AM NATALEE" on UA-cam. I recently started sharing my experiences and some of them are negative.
I've had several kidney stones in the last 15 years and just found out that I'm in stage 3 CKD. My eGFR went from 88 to 46 in six months' time. I have some symptoms, but mostly, I'm scared about the future. I'm struggling with the mental aspect. I have one question. Are you able to travel while on dialysis? Fortunately, I like staying at home but I'm concerned that I won't be able to take short trips out of town for one or two days to see family. Thank you for your videos.
a GFR in the 70s is still good and you are so far away from needing dialysis. You will likely never need dialysis if you take good care of your kidneys: good diet (little sugar and processed food, and as natural as you can), healthy sleep pattern (kidneys are sensitive to lack of sleep), avoiding toxins such as medications unless absolutely necessary and of course alcohol/drugs. Be careful with antibiotics, I’ve seen it damage people’s kidneys. You’re still young and can stop or even reverse kidney disease. Read as much as you can on health topics and watch interviews with experts on diet and health. Good luck. Edit to add: watch out for NSAIDs (painkillers such as ibuprofen, etc) they’re very damaging to the kidneys and were the start of the damage for mine.
No matter which medical avenue an ESRD patient decides to take, your personal experiences and exhortations with CKD are priceless. Concerns for family and how they'll be affected by ESRD, especially, weight heavily and I'm so thankful you spoke of it. I'm quite old and made the decision for Conservative Care Management several years ago, but I've been drawn to your videos because you speak to the realities of coping with kidney disease. I've always rather have known the truth than run from it, and (imo), you are superb at helping folks to understand not only PD, but the challenges of dialysis in general. Thank you forever for all the time you put into your videos. They give folks a clearer vision of what seems quite murky in dialysis. I'll continue to watch your videos and hold you in the highest regard. The hope your insights bring into people's lives is invaluable also. Many, many thanks. I wish you and your family all the best.
You is a super nice lady🎉🎉🎉
U r fantastic. I am now at stage 4 failure and expect to be on dialysis sooner than later. You sharing your experience has been very helpful. Thankfully as a Canadian all costs that I have and will be faced with are paid for by the Canadian Kidney foundation. Very fortunate indeed. Good luck to you and best wishes to u and family
Thank you for your valuable and helpful videos, am crying 😭 you've described exactly how I'm feeling and it's ok to give myself permission to feel what I'm feeling. I love God and know He's holding me, but some days are so much harder than others. And it's hard to find someone to talk to, who understands. So thank you 🤗❤️🙏
I felt noticeably better after my first dialysis session. People commented how my complexion improved, which I didn’t realize looked bad.
Thank you for commenting. I'm at 16% and very nervous for the life changes dialysis will bring. Your comment us so encouraging. Thank you.
I unfortunately felt awful for probably the first 6 months on PD and still only feel so so. I have had cousins say my skin looks so much better!. I had no idea that it didn't!.
@@coffeeandhorses7991 I hope you start feeling better soon on pd. Are you following diet guidelines and trying to get some sort of exercise?
Thank you for all of these videos. I know it's hard, but they are so helpful to those of us that see them. I appreciate your time and effort so much!
Thank you, the perspective, feeling, you so beautifully express is most helpful. I know It does help to feel grateful, but when I’m low I don’t want to complain and retreat inside. Thanks for sharing these thoughts.
With much appreciation, Mary(6 months on PD and feeling better often🌺)
Listening to you - your bare honesty - makes me want to cry - tears in my eyes.
Your generosity is astonishing.
I have compassion for the way you or anybody would normally look at the situation at hand currently with kidney failure. The first thing I would want to do is escape the rough edges. My wife passed away from chemotherapy trying to treat the cancer. Fortunately we were able to understand a life-changing book material written by a Eckhart Tolle called, The Power of Now. It helps tame the conditioning of how we feel we're supposed to get somewhere better than where we are with a life-threatening problem. Also, it can curb the anxiety of the future for anyone.💜
I just wish I could hug you back to perfect health.
I have not seen anyone on this journey that has as strong a drive to persevere no matter what ones diagnosis may be.
You truly are loved❤ by many of us.
Every moment you are with your family is a Blessing for you all and each moment is a New Win for you!
Please feel my Mama Bear Hug all the way from NC.
YOU are helping so many out here by your candor; your truth, and those tips are just reminiscent of the commandments when things change. You are an AMAZING Soul.❤
I appreciate you sharing your emotional experiences. Really, our feelings involving these scenarios are the experience we have. Shining light on the darkness in our thoughts and feelings is how it’s dispelled. Society teaches us not be vocal about feelings and it handicaps a lot people during hard times.
I have gone through most of the emotional challenges you describe on my road to dialysis.
One thing I found hard, but eventually came to terms with, was the realization I could not control my health. Diet, exercise, etc. can be helpful, but my kidneys were going to fail no matter what. Just accepting something happening to me (kidney failure) was beyond my control took a lot of time and effort.
I am glad you touched on anger and bitterness about what life could’ve been before kidney failure. I held in a lot of anger and bitterness, until I learned to let go and accept there things affecting my body beyond my control.
Thank you for this amazing video, and channel.
Thanks for making this video , it really helped me and touched my feelings as I’m on this journey and not a talker , I am lost in the fog for sure but comforted to know not alone . Uk Lee
Thank you
"I'm rooting for you" - now I'm crying, thank you, I needed to hear that
You are a strong woman and an inspiration. .What you have shared is so honest and practical. I pray that you will see the help of the Lord in every way as you call upon His name.
Good to see another video. My psychiatric nurse is watching you now. She gives me my prolixin shot every two weeks. I have been lucky! My test came back and I only have to do peritoneal dialysis 5nights a week. I get to sleep with my wife and cat every Friday and Monday night. See how long that it last? Everything going well with dialysis. I applied for a job driving for a medical transportation company. I told them I’m on dialysis. She if they hire me? Keep up the fight and see you soon.
Thank you, thank you, thank you.
Thank you dearest Sister for sharing your precious experiences onKSD.May God bless you always.❤
Thank you for sharing this helpful video. I will keep it as a reminder. Thank you and God bless you 🙏.
This is such a great video..... I'm dealing with all this.... I feel like no one will understand all these emotions because I don't know anyone else dealing with severe kidney failure. I cried... just knowing someone else there understands and pushed through it is hope.
You have been such an inspiration to me... please continue making these videos if you can
Thank you for making this video.
I’m close to taking this journey and everything you touch on is very, very real to me. I’m really not weathering this well. All I see is a long, dark, painful tunnel with a bad ending. IgA Nephropathy is my kidney disease and although I have other health issues that I’ve been able to address and manage, the kidney failure is just too much.
I’ve lived with this disease since being diagnosed at 9 years of age. My IgA has been intermittent and throughout my life only occasionally raised its head because of a respiratory infection and then calmed down and basically disappeared, which it does but nobody had ever told me that. Then at 57 years the decline started and this time did not stop. It was slow at first but in the last two years has gained momentum. I’m now 63years and I believe at Stage 3 or 4 but my numbers are so erratic I can’t be sure and this of course brings in uncertainty. I will go on dialysis, but when? Now I have the money to do the things I actually looked forward to such as overseas travel, but it maybe too late. Do I have enough time left?
Initially my GP was of little help and sent me to a Nephrologist who didn’t seem overly concerned and sent me on my way with no additional medications. This is when I got mad because I knew there was something seriously wrong. I went to another Nephrologist that immediately put me on meds to lower my protein spill and immunosuppressants, to slow the IgA protein being released and a diuretic to extract water from my blood. I was already on high blood pressure and cholesterol meds, because of my age and the other conditions. He instructed me what to do to slow the decline. Why the hell had the other doctors failed to do this? I now know GPs know little about IgA treatment but I needed a competent Nephrologist and the first one I got was no help and if he was good could have done what the second Neph had done. All the evidence was there.
I’m angry, worried and depressed but your video has made me aware of what to expect. Most of the other videos are of happy, smiling patients hooked up with their happy smiling nurses checking the machine. They are like ads for washing powder or toothpaste. Everybody’s happy…and it’s all bullshit. It’s bloody miserable.
I'm rooting for you my dear.
I appreciate your videos so much. You're so brave to put it out there. I've lost 2 family members to kidney failure. One did dialysis, one did not.
Like I said, I'm rooting for you.
Thank you
You have such a touching way of expressing what alot of us are feeling. Thank you for putting yourself out there and sharing your thoughts and your journey 💚❤
I do not know if or when I may need dialysis, but my father was on peritonial dialysis 43 years ago, when it involved a huge machine and hours of being 'hooked up'. I have a brother that is doing hemo, and I am watching and processing all your videos so that I can make an informed decision should it become somethng I need to consider. I want to tell you thank you for being so transparent and for sharing YOUR JOURNEY... I know that everyone's journey is different, but you are really helping this farm wife from a small town. *U* Kathleen
Thank you for your kind words! I'm always happy to hear that my videos are helpful!
This was good
Thank you for making your channel and this video
Getting the PD catheter surgery in a few weeks
You hit it right on the head thank you
It’s amazing how I learned so much from your videos. If you weren’t there at my training for PD I may not have survived it. Everyone is so impressed at my learning of doing the dialysis but without you it wouldn’t have been so good. The doctor was watching me closely. Can I do hemodialysis at home someday? That’s a whole different game. Thank you so much!!!
I'm so glad that my videos were able to help you and thank you for telling me. I really appreciate that. And yes, you can do hemodialysis at home!
Yes, you absolutely can do hemodialysis at home. You will feel more free and in control of your life again. 😊 Wishing you the best of luck!
Thank you needed to hear this xxxx
What a beautiful person you are
A journal has help me I just started my journey 6 weeks ago .. thanks 🙏🏾
Thank you for your video. It has been very helpful 🤗
I'm so glad I came across this video I recently started and I'm feeling all these things I only started in July this year and I was only diagnosed a year ago so it's hard thank you for posting
Can you make a video on your renal diet? Satisfying food hacks?
Thank you
You are so inspiring to me
Everything you speak is soo True.ive.i am soo sick & tired Every single day.I feel like a burden on my Husband.. i have been on the dreaded D for 18 years now and I am now contemplating Euthanasia.I just cannot handle it anymore.😢.
Ty for this video. I have stage 4. I’m struggling with the emotional part. And with the part of getting it thru to my family that this is not a cold I’ll get over it I’ve been told by my son he didn’t wanna talk bout it that I’ll be fine. And my mom avoids the topic all together. Family always called me a hypochondriac all my life, I wonder if they think I’m faking this,
Well, they took me off dialysis 2nights a week. Of course my heart was surrounded by fluid and lungs too. After 5days in a Rochester hospital, I have been relegated to 12hours a day peritoneal dialysis.
Thank you for this video! I have been on hemodialysis for about 5 months. A week from tomorrow I will have s PD cath placed. I’m really scared about infection. I am not a clean person and I have a lot of cats. I’m really worried. How common are infections? I’m 53 so being clean/ sterile isn’t in my wheel house as they say. You may never see this because this video was made months ago. But on the off chance… here I am.
Good video. Feeling a lot of these things. Were you able to work still? My doc told me Medicare takes care of all expenses. If not, we cannot afford this without my income. I hope she's right. Hoping I can still garden, too. Many unknowns.
I've been on dialysis for the last 10 years and I too have been sharing my journey "I AM NATALEE" on UA-cam. I recently started sharing my experiences and some of them are negative.
I've had several kidney stones in the last 15 years and just found out that I'm in stage 3 CKD. My eGFR went from 88 to 46 in six months' time. I have some symptoms, but mostly, I'm scared about the future. I'm struggling with the mental aspect. I have one question. Are you able to travel while on dialysis? Fortunately, I like staying at home but I'm concerned that I won't be able to take short trips out of town for one or two days to see family. Thank you for your videos.
R u on the list for New kidney replacement
How much does PD vs. HD cost per year?
I’m 28 and my efrg is 73 -75 if I lose my kidneys I’m killing my self, I can’t live life in a hospital
Hey. You are quite young. Lots of possibilities. Take a deep breath, listen to some videos, find out the facts and your choices. Good luck.
a GFR in the 70s is still good and you are so far away from needing dialysis. You will likely never need dialysis if you take good care of your kidneys: good diet (little sugar and processed food, and as natural as you can), healthy sleep pattern (kidneys are sensitive to lack of sleep), avoiding toxins such as medications unless absolutely necessary and of course alcohol/drugs. Be careful with antibiotics, I’ve seen it damage people’s kidneys. You’re still young and can stop or even reverse kidney disease. Read as much as you can on health topics and watch interviews with experts on diet and health. Good luck. Edit to add: watch out for NSAIDs (painkillers such as ibuprofen, etc) they’re very damaging to the kidneys and were the start of the damage for mine.
I’m curious if you ever got off the lithium after your initial hospital visit.
Yes I did!