Kidney Disease: My Life after Kidney Failure
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- Опубліковано 17 чер 2023
- Life does not end with Kidney Failure! This is a short video covering one of my busier days living with Kidney Failure. I do Peritoneal Dialysis for 8 hours every night using a machine called the cycler. During the day I'm free to do what ever I have enough energy for.
Thanks for watching!
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. Be your own health advocate as you work with your healthcare provider.
Baxter Health Corporation supplies my Cycler, PD fluids and supplies. My supplies are delivered to my home.
My clinic is Dialysis Clinic, Inc. ( DCi )
#Kidneydisease #Kidneyfailure #dialysis #kidneyfailuresymptoms #peritoneal
Thanks for sharing. I am a CKD patient as well and again wishing you the best on your health journey... Much love to you and your family 🙏💕🌹🌹🌹🌹🌹🌹
Thank you and all the best to you. I am praying for a miracle for you 🙏🙏🙏💕🌹
Thanks for sharing your life.
My pleasure!
Sweet Soul...I have zero energy and also miss gardening. I have buckets where I've planted red potatoes, white potatoes, hot pretty peppers, beautiful tomatoes,rose red radishes, Daikin and crunchy rainbow carrots. My buckets are like the 5 gallon paint buckets from Lowes but if you go to an ice cream establishment they sell the same Suze buckets used for like 50 cents each...look for those bargains! My yield is plenty for us and to share! I forgot my cantaloupe babies....they're in a bucket mound. And pumpkins for fall. Grow buckets are so nice! Less stooping, can tend to the plants more often, they are less buggy and it all smells so wildly delightful!!! Enjoy dear one.
You can also get the icing buckets from grocery stores that make cakes. You have to wash them out usually, but it's still worth it. They will usually give them to you free!
Thanks a great idea! Thank you.
I do have a couple of orange Lowes buckets. Your bucket garden sounds awesome!
Thank you for sharing this wonderful video. You are definitely an inspiration 👍. Please continue making these very important videos 🙏.
Thank you for your support!
Thank you for sharing your life. My husband has been on dialysis for 5 yrs. Because of one of your videos I'm being checked for kidney failure. Your list of symptoms were really an eye opener. I was diagnosed with Type 2 diabetes a year ago. I get so much encouragement watching your journey. You may try to have potted plants to help your green thumb. It may help to have that garden area cleared and maybe covered with plastic or cardboard and mulched to keep things under control until you can figure out what to do.
Much love, big hug!
Thank you for encouraging comment! I have a few bucket and I have a ton of cardboard with all the dialysis boxes!
Did you have a transplant?
I think it's great that you've got Trudy in your life. It's awesome to share your life with a dog. They're so loving and it's great that you feel secure having her with you when you're out enjoying a walk. That's great 😊 Thank you for sharing your journey with us. All the best
It really is! I wish I hadn't put off getting a pet for so long. I was waiting for the "perfect time" to get a pet until I realized that that just doesn't happen unless you make it happen.
I really enjoyed the vlog!
Thank you!
I'm glad to know that you don't have to get up right away in the morning if you don't want to! I hate being on an exact schedule.
At first I felt like I had to detach the moment Therapy ended. Now I just close the twist clamp (if I wake up) and go back to sleep.
no way! I was wondering why I felt a connection to you. I am also a violin/orchestra teacher. I was in the middle of competition season last year when at the competition (it's called UIL in Texas), I couldn't even conduct on stage. I kind of slumped into a chair as my kids played. Thankfully they had a good experience and did well, but my friends took one look at me and told me to go to the ER. I remember them transferring me to a much bigger hospital by ambulance and that's all I remember for about 10 days. I woke up in the ICU intubated and connected to a dialysis machine. It was the shock of my life and here I am 16 months later waiting on the transplant list. I used to teach private lessons too, but kidney disease took that away from me before I got to the hospital. I just turned 46 and teaching at school is so exhausting. It make me feel so badly that I don't have the energy really to work full time, but I have to as I have no kids or husband. Thank you for sharing your story, because it makes me feel not alone. No one around here really gets it - they all think I'm normal and am "better now." Which I'm sure you would agree that right now is not "all better." Do you mind sharing anything about your journey? How old are you? Thanks for making your videos and I am praying you get a kidney soon!! Your pup is a sweetheart. Mine keeps me going!!
Thank you for sharing your story. I'm so sorry that that you had to go through this. Teaching private lesson just a few days a week is so hard and exhausting! I can't imagine having to do it everyday! I'm glad that my videos are helpful to you. And you're right, being on dialysis does not magically turn everything back to normal. Not even close! I'm thinking about making a video that tells a little bit more about me but I'm not sure how much to share.... But I will be turning 42 this year!
A month ago, out of the blue, my husband had to go on dialysis. Needless to say, we are overwhelmed. Thankfully, I have been led to your channel and have been watching all I can. Thank you especially for the video about what you wish people understood. I have absorbed the ideas and I know it will help my husband. You are truly a gift from God to those of us who are lost in this labyrinth. By the way, I am also a lover of dogs and interestingly enough I really enjoy listening to the violin and am in the process of learning to play the ukulele. Thank you for sharing your experiences.
This video was such fun to watch! Just seeing how you're doing as the day progresses is informative and helpful to those not yet on dialysis but definitely headed for ESRD. I loved hearing you play the violin and also, the music you put in at various point in the video was cute and entertaining. I know it takes more work to do that, so thank you for your time. I love your videos.☺
Thank you! I almost completely cut out me playing so thank for your supportive comment and encouraging words.
Incredibly helpful. Thank you soooo much for making this video !
Id consider a greenstalk. They have sales and enjoying mine with a variety of berries, peppers, herbs and kale or lettuce.
So simple to assemble. Flowers are pretty too.
Grow bags work great for tomato, peppers or even potatoes..
We learn to modify as life throws bricks at us.🌼🌻
Great idea!
I'll have to look up a greenstalk. I have couple of pots in the garage. I just need to schedule a family day to "garden".
You are such a beautiful person. I can relate so much to you. You give me hope❤
Thanks so much for sharing. I loved it ❤
Glad you enjoyed it!
Hello. I’m a dialysis patient as well. I’ve been on dialysis for 15 years in center and I’m looking for other patients with their own channels who are sharing their life. I strive to be as athletic as possible. It’s nice to see someone else sharing their life. I encourage you to start the garden. I live off grid and I believe you can do it. My suggestion is to pick things that are more self sufficient. A grape trellis and perennial flowers. You have inspired me to share my garden more. I appreciate feedback from another patient if you feel like watching some of my videos. To be honest I’m a little shy about sharing dialysis stuff for some reason. Thanks.
Thanks for sharing your life. Take care and enjoy life!
So beautiful !! May God bless you and heal you. ❤️💕👍🏻🙏🙏
I can see that working while on dialysis is not always easy. I enjoyed seeing a day in your life b/c it gives insights to the real challenges we face. (like having to sit down alot) I am not on dialysis yet, as I am at the lower end of stage 4, but I can relate to alot of what you talked about in this video. Thanks for sharing!
I appreciate you. It is hard to decide what to use your energy on. At the end of the day I'm exhausted and so many thing I have to let go.
Thank you so much for sharing.
Learnt a lot always. ❤
So glad!
Nice. You play beautifully.
I enjoy watching your videos. They are very informative and honest. Thank you for taking us through your day. You seem like a genuine caring person and I pray God will bring a complete healing to your body 🙏. If you don’t have a relationship with Jesus I pray you will. He is our strength 🙏.
I will go in august to an nephrologist to see about my kidneys. My eGFR is 28. My creatinine blood is 1.9. My BUN is 28 and my Bun/creatinine ratio is 15.
My primary doctor doesn’t seem concerned but I am. I hope I’m worried for nothing but your videos that I have watched have helped me understand so much more. Thank you again.
Thank you for your kind words! And I think it's good that you are going in to see your Nephrologist!
i liked the video , very easy to watch
You are the favorite! Loves!
You're the best!
Umm... I just said you were ... :)
Keep living and keep enjoying yourself.
I have hypertension. I appreciate your 411 teaching.
Cardiologist in the morning. Seems they find more and more.
I consider corn syrup, sugar, greasy foods, and bakery as toxic,
i.e. pop, donuts, French fries, candy, one cream etc are poisons.
But years of abusing my body has taken it toll, damage is done.
I'm obese and pre diabetic, but unsure of my liver and kidneys.
This is kinda new to me, but I was diagnosed with high BP 2 years ago.
Keep doing these videos. You are helping so much. You are my hero. ❤❤❤ From Elkhart indiana. :)
I'm always so happy to hear that my video's are helping others. I visited Elkhart when I was a young. I have good memories of that city.
Pot gardening is manageable👍💕
I know you said that people have said they don't want to hear about your diet and food choices all the time, but I would LOVE to see you do "what I eat in a day" videos!!! (DAY=24hrs.) I watch athletes do "what I eat in a day" videos. I like the "cheat day" videos too!!! I have always loved food. But I went vegetarian 7 months ago and dropped a lot of weight. When I went vegan for health reasons, food quality became much more important to me. I'm interested in knowing how your food choices make you feel.(in your body, especially the next day). My dad had CHF, HBP, MI×2, and DEPRESSION). He used to calculate calories, chol. , fat, Na+, protein, carbs every day. If he had a cheat day, he would SUFFER the next day. 😢
That's a good idea for a video and I think it could be helpful. Thanks for the suggestion and encouragement.
Oh Danny boy the pipes the pipes are callin
From glen to glen and down the mountain side
The summers gone and all the roses falling
Tis you tis you, must go and I must bide.
When come you back in summer in the meadow or in tha valley hushed and white with snow
Tis ill be there in sunshine or in shadow
Oh Danny boy oh Danny boy i love you so😢
Sad little tune.
I love that you play the violin, amazing 🤩
Hi ma'am. Did you have accute Kidney or CKD?
I get through by doordashing daily. Even just an hour. I go right out at 8am. I got a hamburger today as a treat for protein since I can’t have ice cream or pop. I rode my bike twenty miles this week. It my back injury that is really putting a damper on things like that. I just try to make the most of the 16hours I have a day off the machine. I’m sure you’ll get that garden back. I have been getting iron IV’s at the clinic. Check into that? Making more red blood cells, which I was low with the anemia. I was surprised when my nurse team at the clinic thought I should consider smoking marijuana for kidney symptoms. They do it. Kinda disappointed. I have to trust these people with my life. There’s nowhere else to go without a two hour drive. I guess it’s 2023? I’m on seraquille so I go into a deep sleep. I don’t worry all night. If I wake up too early, I disconnect during the last hour and a half full of solution and do my banking ,shower, shave....... Kidney disease can be rough. Before dialysis 3weeks ago, I couldn’t walk to the car. I feel like I did three years ago. That much better. I wonder if my kidney doctor should have been helping me more? He just said dialysis was inevitable and there’s nothing you can do. He told me that 5years ago at 28%. I had to get below 18% before they considered doing anything. I have a fistula and it ruined my wrist and hand. Then they told me about peritoneal dialysis. You just can’t trust doctors. That’s why I’m getting dialysis. Too lazy to do bloodwork. They watched me suffer while they played tennis and when out to dinner?❤ I’m thinking of you and waiting for each video. My wife said your a wonderful violinist. Don’t get a fistula if it is going to hurt your hand. It will ruin your playing violin. I’m serious. I can’t write a letter without pain.
I'm so sorry that fistula injured your wrist and hand. I hadn't thought of that affecting my ability to play my violin, but your right!! It would be awful if I couldn't play anymore. I'm glad that you were able to go bike riding again and had a hamburger. I had a hard time switching from "save kidney's at all cost" to maintenance when it came to food.
Please don't let the water waste down the drain while you lather your hands. You could turn it off and then use a clean tissue or paper towel to turn it on/off again.
You're right. While filming, not only did I forget to open up my mini-caps before washing my hands, but I also left the water running!