Kidney Disease: My Story of Kidney Failure
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- เผยแพร่เมื่อ 22 เม.ย. 2023
- Part 1: • Kidney Disease: Functi...
I share my personal experience with Kidney Failure. In Nov of 2021 I reached End Stage Renal Failure (ESRF) and had to start on Peritoneal Dialysis to stay alive.
This video is for those with Chronic Kidney Disease who are headed toward Kidney Failure. I hope this video will help others suffering with Kidney Disease to not feel alone.
Did you find the misspelled word? Even my husband, (my spell checker) missed it. The life of someone with dyslexia.
Thank you for watching My Story!!
NOTE: My channel is for awareness, community and entertainment purposes only. Nothing on my channel is meant to be taken as medical advice. I am not a doctor nor am I medically trained. I'm a patient who is suffering from Kidney Failure caused by FSGS. I'm sharing my own experience and own opinions. Be your own health advocate as you work with your healthcare provider.
Baxter supplies my Cycler, PD fluids and supplies. My supplies are delivered to my home.
#kidneydisease #kidneyfailure #peritonealdialysis
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My daughter died of suicide in 2021 and was able to donate a number of her organs, including her kidneys.
It gives me peace to read about how her gift might help people running out of options. ♥️
So very sorry for your loss 💖
@@bts_vintagearmy3754 Do the doctors give kidney patients the list of donors names and phone numbers that they can contact?
I'm so sorry! I can't imagine having that much compaction for others during such a painful time. You are amazing! Thank you!
Your daughter is a HERO !!!!!! 💚💚💚💚💚💚💚💚♻️♻️♻️♻️♻️♻️♻️♻️. I’m still so very very sorry for your loss ‼️😘😘🙏🏼🙏🏼🙏🏼🙏🏼
@@kidneykeepingpeople sign their drivers license. !!!! It’s not compassion from family unless they make that decision. It the compassion of the donor. Who wanted others to go on. If she wasn’t. This is the gift of life. God bless her. I’m just sick it was under such circumstances 🙏🏼‼️💚☝️
You are my happy accident and I say that because I just found your videos by accident. I was diagnosed with 3rd stage kidney disease and your videos are helping me see so much right now. Im in the numb stage at the moment and don’t really know how to feel or what to do but your videos are a lifesaver! Literally a lifesaver! So thank you so much for doing these videos. Continue to stay strong and I hope you will post more videos about your journey. Much love Tami
Thank you so for your kind words! Eat as healthy as you can, watch your blood pressure to slow down your Kidney Disease.
Are you on dialysis yet?
God be with you always and keep healing you day by day. ❤❤❤🙏🙏🙏
Your experience must have been very scary and frustrating but I admire your positive attitude and willingness to work through the challenges and challenges to get better. The experiences you have shared is so inspirational specially to people who are impacted by the same challenges . God Bless You and I wish you all the Best ❤
I'm going thru the same feelings that you did. I cried for what you all went thru. I also hope I can push thru this difficult time(79yrs old). I also have diabetes,witch does not help. I pray that I can live a little longer. I have a lab test on May 1st. I hope my GFR will go up to 16 or higher. I'm at 14 now. Scared and frighted. Chuck.
Thanks for you comments! It is so stressful waiting for results! I hope your labs go well and your GFR rises.
@@kidneykeeping ThankYou!
Thank you for telling your story…
74 now caught Covid …really messed me up……. Better now somewhat but proteinuria daily …..sometimes not so much.
Stubborn to believe I’ll be okay…..delusional?
Strangely blood test showed no problems
I’m watching your videos starting today. I am in stage 5 GFR 12. My next appointment is in 2 weeks with labs also. I haven’t started dialysis as of yet . However, I have just last week finished the required testing and been approved by the transplant team to be put on the kidney transplant list . I plan to do PD when the time comes ….lately I’m feeling much worse , experiencing more symptoms, I feel that time is near for me.
@@katrose1701 You can do it Kat!
The flower that blooms in adversity is the most rare and beautiful of all. I've watched all your videos. You are a woman to respect and admire for the size of the fight in you and for your passion to help others. As you've learned the hard way, what we don't know can hurt us. Thank you for empowering us with your hard-earned knowledge and the sincerity with which you share it.
Wow, thank you!
I haven’t been diagnosed with kidney disease at this point, but I am in my early seventies with diabetes which is well controlled. I want to thank you so much for making these videos. Staying as healthy as possible is a matter of learning about how your body functions. My blood work is pretty good for my age, but I have been lazy about some of my doctor’s recommendations. I lost my husband of 32 years about 15 months ago and the emotional turmoil has been very difficult, so taking care of myself physically hasn’t been at the top of my list. Your videos have been a jolting wake-up call for me. You are putting so much good into the world with these videos. I hope it comes back to you a thousand fold. You have my sincere gratitude.
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I am going through the same thing…mine started August 2020 and my kidney failure has progressed quickly too. I was in shock when it happen and going down hill so fast. I have 11 brothers & sisters and they all want to help but in a way I feel very much alone. I just can’t get out of this “funk”I am in. My body is failing and I can’t stop it. I feel tired all the time. My blood work shows that things are progressing fast. As we all know the kidneys don’t get better they just go down hill and every time tests are done you know that the results will be bad. I am just one step from dialysis and that scares me. Everything you talk about I have got. My doctors are good but it is a very scary place to be in your life. Not sure when my next step will happen but I feel like I am pulling away from everyone I love 💕…..I just don’t want to be or see anyone. I am so happy I have come across your video…like you I don’t know anyone else that is going through this kidney disease like I am….thank you so much for opening up and telling your story. You are the best. Take care xo
I'm sorry for what you are going through and it is scary. Especially when the progression is happening so quickly! You really don't have enough time to digest everything. The feelings your are experiencing make sense to me. It's so hard! Hang in there and keep trying to move forward. Some days will be better then others. Thank you for sharing your story.
Same here. Starting dialysis soon. 16% functioning. Blessings
This video is just what I needed right now. I'm like you, that I don't want to 'bother' people with my problems, but I'm getting to a point where I am going to need help navigating this health situation I'm in. Thank you for sharing, your words helped me so much
I'm happy to hear that my videos were of help. I hope you are able to find the help and support you need.
I went on a plant based diet and take Albutrix for protein supplements but staying on low protein, low sodium and low potassium and my GFR went from 34 to 44 in 3 weeks. There are so many cases on TH-cam about success following plant based diet. Why aren’t doctors telling us this? Time will tell if I continue to improve but I am thrilled with this positive direction.
Thank you for sharing your life. I really appreciate it. I'm so sorry that you had to go through it when covid started! My heart goes out to you.
In case you did not know, lithium can cause kidney failure. I suggest you talk to an attorney. The statute of limitations may have run out for a lawsuit. But check anyway. Steroids and high blood pressure medications can also result in kidney failure. A close relative of mine had a kidney transplant in 2021 after years of taking high blood pressure medications. I am in law school. I recommend you talk to an attorney. Doctors often treat symptoms without inquiring to ascertain the root cause of certain illnesses. In some cases, medications being prescribed are the root cause. But in this regard, there is a code of silence among doctors. Even if they did not prescribe the medication, they will not implicate another doctor's treatment. Many illnesses are classified as idiopathic, meaning "origin unknown." But the origin is known or knowable.
My psychiatrist, the one that prescribed the lithium, retired after learning that it could be the cause of my Kidney Failure. She also kept saying she wasn't the one who prescribed the lithium.
Thank you so much for sharing. So Sorry you are going through this. BLESS YOU.
Incredible story thank you so much for what you are doing and sharing your story because you are helping so many people. I needed this video now thank you so much 🙏🏽.
My older brother had kidney failure due to either high blood pressure and heavy drinking over the years. He lived through the kidney failure for 6 years. I’m a life insurance broker and I speak with many people with high blood pressure and diabetes, and I don’t want to scare folks but I like to say once diagnosed get life insurance immediately after diagnosed, the sooner the better for rates.
That’s ur older brothers problem
A lot of people have recoverd form kidney problem
Myself as an example my GFR was 3, passing urine was almost a problem
I recovered because I know God and also Indian Ayurvedic medicine
So u have no right to advice anyone to get a life insurance
It’s not a death sentence!!!!!!!!
If u, ur brother or ur family don’t know God
Don’t u ever give anyone an advice again
Because a lot of people will read this n this can lead those with little faith to be sucidal
If u have nothing to say shut ur trap up!!!
Ur late brother will be ashamed of u
MR LIFE INSURANCE BROKER
Thank you so much for this authentic video, it is so encouraging while pointing out the shortcomings in our medical care.
Very moving journey,I watched the whole video. I absolutely empathise with you. Sending you lots of great hopes for the future.
Please don’t give up. I find your videos very inspiring. The strength it takes to send messages while you are so fragile is great. I do hope you can have some relief or comfort doing it. Lots of love ❤️
Thank you so so much for sharing your story. 💜
So moving! Thank you for your courage and goodness!❤️
Brave lady….. thank you for sharing your story with us.
Thank you for the videos. Very enlightening!
I want you to know that your strength in sharing your journey is truly inspiring. I can’t fully understand the pain you’re going through, but I’m here to listen, support, and stand by you. Your courage in facing this challenge head-on is remarkable, and I’m sending you my best wishes for strength, healing, and brighter days ahead!
I have just had an indication of my kidneys not functioning properly. I am grateful for your willingness to share your story... to help others as well as yourself. *U* Kathleen
I am so sorry, thank you so much for posting this video dear. You look so beautiful and strong and healthy now. I am in high hope you are doing well 🙏
Thanks for being so brave to tell your story..i have lost one kidney now the other one is failing ..so thanks again for all the infomation ..makes me feel a little stronger !
I am considering making a change from labor and delivery nursing to PD nursing. learning more about it and came across your videos. You videos, education from a patient perspective has shifted me even more to make the change and support patients that need that extra support and guidance, We as healthcare workers can enhance your very difficult experience or like you've stated here create trauma. I'm sorry the healthcare community contributed negatively to a already very difficult time for you and your family. Thank you for making purpose out of you trials.
My husband's going through the same thing your going through. He's going on pd also now in November. Thank you for sharing.
Watching this is heartbreaking. Thank you so much for sharing your story. The medical community FAILED you. I am so sorry.
Yes, they failed you! I'm a diabetic, have heart disease and bad kidney stones. I'm suffering for weeks with stones and Dr doesn't do much. Almost died and in coma for 9 days.
Talking about the day that your life permanently changed in a way you would prefer not to experience is really difficult. You did a great job. Talking about kidney failure is a big issue because doctors dismiss mildly out of whack lab results as no big deal, not to worry, etc. And it’s exactly when things are mildly off that you could very well turn the situation around.
❤ I think a good response is " how important is this to you?" This is what I suggested my sister say when people ask her why she was not married. People can be so insensitive. Thank you for your humor in a sad situation
I am a nurse, and I cried with you. HUGS
Thank you!
God bless you. I’m so sorry you were alone.
Thank you so much for your bravery and detailed information
You have been an inspiration, your strength keeps us fighting. I got the symptoms, but Thank God it went normal last month. I keep watching your videos as it inspires me. Across the globe you are being heard. May our Lord Bless you and heal you. God Bless you!
I cried through your video. It’s such a lonely place. I’m in training for PD and my brain just will not work. They seem frustrated with me and it’s embarrassing. Thank you for sharing your story. Best wishes.
Thank you for posting this. I have Alport Syndrome, which is a rare genetic kidney disease. It took me 20 years to even get a diagnosis. Not all Nephrologists are created equal ! My decline has been over years. I early on made the decision that I would not do dialysis. I have been exhausted since late stage 3 and the thought of adding another commitment to my already exhausted self was overwhelming. I prepared my family as well as I could and considered and responded to their objections. At stage 5, only this past week have I considered dialysis as an option. I don't know why I have opened to it and am not committed yet, but I am considering it. I have been pouring through videos and I am grateful for yours.
Thank you for your story. I took care of a family member on dialysis for seven years and there are so many challenges that would crop up unexpected. I’m sure that your story would help a lot of people - those who battle with the disease and the family because unless you these things first hand, it’s hard to imagine.
Thank you for your comment and taking care of your family member.
I’ve been terribly sick for months- doctors won’t get me into other doctor for referrals- claiming the don’t get the referral and or claim they never get my blood work and or they don’t show for appointments- what I’m learning is they are forcing people into the hospital- if not leaving people terribly sick- I’m proud of you for sharing-
I have so much to say, I don’t know where to start. First off, I’m so glad you’re doing these videos. I hope you know how much it helps other people going through the same thing. Secondly, I never would have guessed you had kidney failure by looking at you. You look, young, beautiful and healthy. I like how you are just yourself while doing the video. You come across so real and so honest and very comfortable in front of the camera. Comfortable to be yourself, even if you feel emotional. The authenticity is everything. You have been through so much, and you seem so genuine and honest and good and kind. Your kids and your husband are indeed lucky to have you. I am so happy that you changed your mind about considering not doing dialysis. It must have been tough on everyone. Anyway, I just recently discovered your channel and I’m so glad I did. Again, thank you for doing these videos. It helps a lot of people suffering with kidney issues and it obviously helps you, too. A win win! Lastly, I wanted to ask if there is any movement on the kidney donor list. Is it primarily just a waiting game? I know the list is long. Are you open to maybe having a cadaver donor? Or focusing more on a living donor? Sorry for all the questions. I look forward to watching your videos. I hope you found a new pcp.
Thank you for your story on your kidney failure journey. It resonates in some ways with me. I Just moved into stage 5 kidney failure but have been a diabetic for 24 year, yet believed my blood pressure and diabetes were under control.
I too am disappointed that little seems to be able to be done about my high creatinine level, which computes to proteinuria, a very negative sign. I am not giving up yet and I hope to seek advice from another, more progressive clinician.
My regrets for you is that you are so young with this condition and may be on dialysis for many years. My thoughts and prayers are with you each day; I admire your strength and again am grateful to you for sharing.
You’re very brave,and to share most generous. But this is the truth
Thank you for sharing your incredible story. What an amazing, difficult personal experience. I am so sorry for such a hardship. I wish for your strength, your health and loving support. Again thank you for sharing.
Thanks for you comment
Since age 27 I had thrombocythemia which has now advanced to myelophybrosis less than a decade after that i developed glomerulonephritis (not sure if my previous condition led to this)
I was 35 then. I am now 55 and having been on similar treatments to what you have just discribed (prednisolone & cyclosporine) i am finally at stage 5 kidney failure with gfr fluctuating between 14 to 16
Unlike you who have lost function within 2 or 3 years, Ive battled with chronic auto immune for 20 years the treatment kind of worked until it didn't.
I felt similar guilt and helplessness too. I can relate to everything you just described so perfectly. I too will be starting on dialysis soon.
Thanks for sharing your story i hope you are getting all the love and support from friends and family
Im sending you healing thoughts ❤
Just found this and I don’t comment often but I wanted to thank you for sharing this with everyone. You are stronger than you know 💜. Best wishes to you in the future.
Thank you so much!
Thank you from Greece 🇬🇷 🙏 ❤
My BiPol meds are starting to hit my kidneys, too. I have been crying a lot. I have to get stronger and smarter on this whole thing. Thx for the Cathartic vid ❤😊
I am a new viewer, & relate to your journey so much. I’m so glad we’re on the other side of this.. I’ve been on hemo for 18months now, and I just got my PD Catheter last week. Thanks for all the informational videos & the kind & feel good words. Best wishes to you and yours! ❤️🩹
Thanks for watching. I hope PD goes well for you!
I'm also on lithium and saw my filtration rate is just below the normal limit, but nobody has said anything to me. I have a bunch of your symptoms (edema, urine changes, dry skin, scalp issues) and I funnily enough changed to a keto diet a few weeks ago to try to lose weight.
My TSH has been climbing for YEARS and only this week was I contacted to tell me it's getting too high and they're considering taking me off lithium completely.
It's so difficult communicating with Drs. They're so judgemental and so unwilling to listen. Especially to women. The fact your husband had to be the one to get through to them on your climbing creatinine. I take my husband with me too just in the hopes of added credibility.
I'm only 30 and I'm trying to get pregnant after a miscarriage, and them playing fast and loose with our health (and therefore fertility) feels completely abusive.
I'm sorry for what your experiencing! I've seen doctors attitudes change when I mention I'm bipolar. it's almost as if I've lost some creditability or something? Thinking of you!
I just stumbled upon your video. And i want to thank you for sharing your story. I am not suffering from kidney failure but it's good to be aware of the causes, symptoms and treatment. You come across as such a kind and compassionate person who wants to help others like you feel better. You seem such a genuine person, so honest and also. It's so pleasant to listen to you. Like i can sit through right till the end. And last but not least, congratulations on your brave journey and being strong enough to go through this and come out so positive. Love ❤
Thank you for your encouragement and kind words.
I discovered your channel by accident. I am a Type 2 diabetic and reasonably controlled but there is the chance of progressing to kidney problems later. I have watched two of your videos so far and found them to be very good. Clear instruction combined with empathy from a patient`s perspective. Keep up the good work!
Thank you for your kind words!
Thank you for sharing your experience. It helps as I'm just about to start my peritoneal dialysis at home.Feels like their's someone who undergone the same process that I have. Maintaining positivity and faith specially on those times where you need to be in the room to have surgery was crucial. I recover quiet good after but the adjustments of having dialysis regularly was a challenge for me specially my body needs to tolerate the pain while draining. Still hoping that eventually, my body will get used to it. Hoping for the best for both of us and yes your right, thankful that their still ways for us to continue to live which is home PD.
Thank you for sharing....sure it must help so many.
Bless you for sharing such private feelings with us. My husband got his PD catheter a week ago, has known he has glomerulonephritis for 20 years, but it’s getting to the ‘pointy end’ now and we are both a bit scared, sad, disappointed. Your videos are helping. (We’re Australian.)
It is hard adjusting to Kidney Failure and all the things that come with it. Learning how to do PD can seem overwhelming and scary while training, but it'll get easier and you'll gain confidence the more you do it. I hope everything works out well for you both and that life can get back to some sort of "normal".
God Bless You! You are a strong and courteous woman! ❤️❤️❤️
Thank you for your kind words.
@@kidneykeeping Thank You. Sorry, I meant courageous woman!
I feel you because my father and my older brother died because of this disease. You have my prayers.
Thank you so much for educating us your followers more about this disease.
I'm so sorry for your loss! Thank you for your kind words.
I was on lithium for 10 years and I never thought it did anything for me so I quit taking it. Now I was just told by my family doctor I have very mild kidney disease. I was a RN for 23 years and I was studying about lithium and do you know the doc is supposed to do blood work every 6 months to check your lithium level. Mine never checked mine. I'm considering taking legal action. But, I want to say I'm so sorry for you you seem like such a sweet kind lady. I will pray for you if that's ok.
I didn't get my blood work done the whole time I was on lithium which was over 4 years. No one stressed to me that that was something I needed to do. Thank you for sharing your knowledge!
❤thank u for the word of encouragement. Im going through the same feelings that u did. Im gonna start my dialysis next week. Honestly, im scared, but i need to be strong for my family.
I wish you all the best. It is scary to be on edge of the unknown. You can be strong, and your family will hopefully be strong with you.
My late mother was a dialysis patient and i was here care giver. I whole heartily know one should have too go through this along it is definitely life altering. I would insist getting a counselor .Along with dialysis, my moms was a diabetic and dementia was developing as well. It was easy at first but it got better. She ended up in a hospital bed but there were others that would help me from time to time, but mostly it was me and her. God bless u.❤
Thank you for sharing your experience and the good advice of getting a counselor.
Thank you for sharing ❤
Oh my gosh Bethanie, you are so brave and authentic! Go ahead and cry, girl, we can take it ❤ I don't have kidney failure...yet. But other chronic conditions (leukemia/panhypopituitarism/fibromyalgia) require routine blood tests and my kidney enzymes are typically high. Perhaps because of these other conditions, no one seems to know. You are so right, when things get tough, you push through! I've had my share of clueless (or is it care-less?) docs too. Thank you for your vulnerability, which helps me to be less reticent in telling others my own story, (which is far more complex than revealed here.) You are a very special person!
Thank you for your comment and encouragement!
Absolutely amazing.
I have to admit I cried with you. Im really glad that you make these videos 😊.
Thank you for your kind words. Hope you're doing well!
@@kidneykeeping I'm as well as can be!.
I watched your video last night after a beautiful weekend convention with my husband. I couldn't sleep well because it really really makes me so angry that your primary care did nothing! I live in a small town and 1 big health-care system pretty much rules the whole county seriously. They have damaged and yes even caused the untimely death and irascible injury to many people including some in my family. If anyone learns anything from this video LISTEN to your gut and seek a second opinion or a third whatever it takes because you ARE WORTH IT! Best wishes to you, keep going strong for those beautiful children and husband that really need you. Jah bless
Thank you for your thoughtful words. I too am frustrated that so many people have experiences with their doctors not being helpful! I agree with you, it is so important to get a second opinion!!
Thank you for this video I'm on dialysis now I felt the same way about life
It makes me furious to hear about your struggle with medical professionals. This is why patients need a strong advocate to support them. It's hard to be both the patient and to manage your care alone. My husband was a type 1 diabetic from childhood. He died from kidney failure and heart failure together. I gave him blood dialysis for about a year after his peritoneal failed and before he finally had to go to the center and that was when I was losing him. He was my best friend and love of my life so I spent most of my time researching and learning about the various diseases he was suffering from and especially kidney disease. My heart goes out to you and I am immensely impressed that you are sharing your story and helping others. I know your videos are helping so many people.
You are so very brave..my little brothers’ kidneys have failed and you hv helped my family understand what he has been going through..thank you immensely! 💜🙏🏼
Hi @annehaught4530 May I ask how old your brother is? My young son, 14 is experiencing kidney failure. We found out last September.
Thank you so much for sharing your journey. It was so helpful to hear your experiences. I’m sorry you’ve had to go through this, and I understand just how tough it really is. I also had kidney problems (cancer), and had my right kidney removed in July of 2021. I didn’t have any symptoms except consistent UTI’s. My doctor would mention that my urine test had blood in them, but never mention that I should have further testing. I also went through chemo, as the cancer had spread to a small area of my bladder. Going through all of this was very lonely as it happened during Covid too. The nurses and doctors were so overwhelmed and I understand that. I was fortunate to have an excellent team even if I sometimes went for long periods of no contact with anyone. My story is a bit different, but the feelings and emotions are quite similar. I never cried, I didn’t think about the future and pretty much shut down for awhile. I’m still dealing with some symptoms and am also still seeing my Urologist, Oncologist, and other specialists. Sending healing thoughts and please know you’re not alone. 🌟🌸🌟🌸
Thank you for sharing your story and for the kind comments! Covid made everything so much harder!
Hey how are you now 😢
Thank you for sharing your story
Thanks for watching!
Soo infornative and inspiring! Am 78 diagnosed ckd in 2013. Had sodium and potassium transfusion in
Lots of prayer for you
You have the same as me!!!!!! But I found out 22years ago and have been on medicine since. A lost pregnancy led to finding out about the kidneys. I was told that I shouldn't have children, so here I an 22yeard later without family. That has been hard. I was 28 when I found out. I was 6 y.o. when my father died from his kidney illness. So kidney disease has been a constant in my life. So I thank you for this video and I hope it will help someone!!!
Thank you❤
Thank you for sharing. I'm sorry that life had been hard and unfair for you!
The best nephro on utube is Sean Hashmi. His vids are very informative. He is also an authority on kidney diet.
Thank you for being so brave to share your story, Im a type 1 diabetic and have had kidney disease for a while now the tests come back abnormal or highly abnormal and yet have been left without help so i totally understand how you felt. At last im being sent for the scan and biopsy and the kidney clinic have been so tired and bones hurt plus my stomach is constantly bloated. cant eat much so am a bit worried it has got bad enough to merit Dialysis it is a lot of emotion considering how i feel and how my family see my decisions but Im hoping its at an earlier stage thank you for this it has helped me considerably blessings always love from london
I learned a lot after I got a kidney biopsy. I hope you are able to get the information you need. Thank you for your comment and sharing!
thank you it really means a ton to me
My kidneys got injured from a prescription medication I got needlessly from my doctor. My GFR dropped to below 70, and I felt terrible. Luckily they managed to recover some function and my GFR has been stable at mid 90s without any abnormal findings in my urine for the past several years, but it still never returned to how it was before the injury. Its a really horrifying and depressing experience, and I also got other organ damage as a result of that terrible medication. I was only 27 when it happened, so I can totally relate to how hard and stressful it is to even talk about it. I still sometimes get overwhelmed by anxiety that my kidneys might just regress and shutdown because of that insult they experienced, but i do my best to maintain what health I have left. I also cannot stress enough the importance of some form of physical exercise to maintain a lower blood pressure and optimal blood glucose.
i can understand how hard and how stress we been through all of this emotional feeling. i thought i could run away on the surgery day as i would not be able to accept how i am now. but for some reason came up to my mind and bring me back to surgery dam. its painful, it hurts when i look myself in mirror until i found your video to shares your experience. yeah, we have to flight with it. we have to live and love the way we are. thank you for letting me know im not alone. ❤❤ im hope you are doing well too
It's hard to accept so much change and be at peace with it! Thanks for your words they helped me!
I'm so sorry.
❤Good morning, thank you for these awesome beautiful videos.
They were shared with me. As a Renal Nurse, I'm on the side promoting kidney health. And As a dialysis nurse, Im offering hope to promote the positive.
Your videos promote the positive, thank you.
Thank you for your comment! I do want to be a voice of encouragement.
Thanks so much for sharing your experiences and the knowledge you've gained going through it all. I have an immunodeficiency disease, and have been struggling to find ways to manage it as my organs have one by one seemed to fail.
I became a vegan and developed a food list, eliminating foods that caused pain or negative symptoms. Over a year's time, I've developed a low Fodmap/low glycemic/ highly alkaline food list. It's restrictive, yes, but it's made it possible for me to have good days.
Since eating this way, I no longer have ulcerative colitis, and the diverticulitis has improved. I've lost 25 lbs. I'm able to hold down a part time job which pays my rent and gives me joy.
I'm taking part in a drug trial for repairing a fatty and scarred liver and just beginning to see a nephrologist as I'm having UTI now, and they've found a lesion on my left kidney.
After listening to your videos, I realize that I have probably had kidney disease for a while now. When there are so many problems to solve, it's hard to keep up, but I do believe that food can be poison or it can be medicine that heals.
Doctors seem to have NO CONCEPT of the importance of nutrition.
I agree that the world has a hard time differentiating between real food and 'food products.' It takes a lot of work and discipline to figure out what is best for you. Way to go!
Oh my gosh I hope you have a new doctor / new doctors 😢 I am sorry. ❤
I did get a new doctor and she is soo much better!
Doing peritoneal dialysis manual was hard at first but I have more energy today. I fainted in front of the nurse Friday. I have my machine coming Tuesday. It is a Baxter AMIA. It’s 10hours a day plus manually. Going for a haircut today. I wish you had the same machine and could do a video. I can have more fluid since I was dehydrated. Watching Indy 500. One last drain and done for today. Thanks for everything your my inspiration.
Thank you for your comments. I appreciate all of the experiences. I will be starting dialysis soon as I'm at 16%
I’ve been diagnosed with bi polar about two months ago. I be scared what will happen if I loose my transplant, and how will I deal with rejection, also my anxiety. I’m doing better now with my bi polar, and labs look good. May u get the best care. This video helped me a lot. I still deal with the feelings of why me so young. I was in my late teens when mine happened. I was fortunate at the end though.
I'm so glad you found this video helpful, and that you're coping with with your situation. The medicine that has been most difficult for me is the steroid Prednisone. It ups my anxiety and makes it harder for me to control my emotions. I'm sorry you are going through this. Hang in there!
🙏🙏. God will heal u
Wow your story is so similar to mine except I started Hemo-dialysis. I was forced to retire at 60 in 2020 due to the Covid-19 pandemic. A few months later my son brought home Covid to me he got from one of his patients. I felt sick for a few days then I was all better, so I thought. After a few doctor visits later, my doctor was having trouble controlling my blood pressure, meds were not working. Blood tests were not good, so I was sent to a Nephrologist and that's when I got the news my kidneys were failing and fast. Been on dialysis 3 months now and depression is real, but I power through it. I hope soon to start Peritoneal dialysis at home once I move into my new place. Thank you for sharing your journey. 🙏🏽🙏🏽
Thanks for sharing a part of your experience. I hope everything goes well with your move and staring PD at home!
Thank you for sharing your stories w/me. Im trying to hang on to my kidneys, but I’m not feeling well @ all. Im going 4 labs tomorrow.
So sorry your not feeling well. I hope you get answers from your labs!
Thank you for sharing
Thankful your better.
Thank you for sharing. Can't be easy. I read in the comments that your nephrologist doesn't know what caused your issues. I am wondering if you had a flu shot prior to your symptoms started. Influenza vaccine has rarely been associated with vasculitis, acute kidney injury (AKI), nephrotic syndrome (NS) and glomerular diseases. It's very rare but there have been cases reported. I wish you all the best. You seem to be doing a great job managing your diagnosis.
I have fsgs i was diagnosed in 2002 and its been treated with just an ace inhibitor to lower the blood going through them xxxx i now have kidney stones and am having an operation on wed this week! Im worried sick of what they might find when they go in to explore my kidneys xxxx thankyou so much for your advice and honesty it really helped me xx
I hope everything goes well with your operation!
Yah my Mami took lithium for 30+years and her kidneys failed. I spent the last 8 years of her life whilst she was on dialysis doing lots of amazing things with her. I went every day where she was and took her out places, including concerts and other events. Even holidays and graduations. I am so sorry you seemed not to have access to family and friends 😢 God has always been with you. Remember you are his wonderful creation ✨️ ❤️
Thank you for sharing your story. Prayers for your complete recovery. Have you heard about bottle gourd. It is a vegetable some were able to lower their creatinine adding it to their daily meals. Ask your dietitian about this vegetable if you can have it. Good luck and best wishes.
I will check it out
I have a similar experience... I am a diabetic type 2, and no one has ever mentioned anything about my kidneys until I started having some infections last year and only this year did one of the doctors mention my GFR which is now at 17. I dont want to do dialysis but may be forced to, I'd rather go straight to transplant. I am single and live alone so I am experiencing several challenges with navigating everything. I have become sicker and sicker with edema, itching, fatigue, etc. They keep changing diuretics and none seem to work. I am also trying to eat much healthier and have researched tons and tons. I appreciate your story/video. I really hope I can improve my kidney function and if I have to, go straight to transplant without dialysis. I am not sure I could do it on my own for very long, it would drastically impact my quality of life but it would allow me to continue to work from home.
Sorry to hear you are going through this. Doing Dialysis does change your life and does affect your quality of life. And I think having to do it alone would make it even harder. But despite all that, I have more energy doing PD then I did when my Kidney's were failing (I also suffered from anemia) and with a GFR of 17 you really don't feel well.
Going straight to transplant is possible, but you will need to find a live donor. The transplant clinic you work with should help you with ways to find a donor.
I was diagnosed with stage 3 kidney disease about 3 years ago , but I also have Tuberous sclerosis which is a genetic disorder that’s causing my kidney disease, I am on blood pressure pills cholesterol and diabetes medication, I am 53 years old.
Thank you.
Hello !! You are my hero
Oh ❤ and hugs to you
Thank you!
Apart from the lithium and Nsaids, for muscular activity, did you do any form of weight lifting or some form of high intensity cardio on a weekly basis before you were diagnosed?
I had similar situation. In May 2022 visited PCP as generally feeling poor. After blood test, Dr had me lay down on examining table, covered me with blanket, then wheel chaired me to hospital room awaiting transfer to Kansas City hospital. Was admitted for six days with IGA Nephropathy, CKD Stage 4. Never a hint about any kidney problem before that date. Two lessons learned: a) part of problem was how little I knew about CKD symptoms as I took kidneys for granted, and b) long lead times to see a Nephrologist. I was impressed by the Nephrologist on-call at hospital so I asked if he would take me on as a new patient within his practice. He agreed and arranged for a timely first visit thereby cutting lead time from 3 months to 2 weeks.
Great comment! If you find a doctor you like, ask if they'll take you as a patient!!
I wish at least asked the Nephrologist from the hospital. I may have been able to get in earlier and I think that is key when dealing with CKD.
My wife was born with bad kidneys and the doctors at children’s hospital saved one and had to take the other. Fast forward to 2020 and she had a stroke. It was a struggle to get her kidney function back up to aceptable levels. She is currently at about 36%.
Taurine significantly increases estimated glomerular filtration rate (eGFR) in patients with chronic kidney disease (CKD) Stage 3 or greater when normalized to baseline values by the sixth month of treatment, and continues to improve significantly for up to 2.25 years.
Are you okay feeling better today God protect you Amen Hallelujah