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Very GOOD!

the tone, the range, the harmonies are everything! Congrats on pulling off a matt corby song <3

I've had bilateral nephrostomy tubes for 3 months. I get them replaced next week. Seen 8 different specialist and there is no etiology they say. Chronic inflammation. I wished I looked at this a couple months ago. Anything I now have learned I've learned from RUclips. My worst issue is keeping the the tube exit from skin stable. I've tried everything. Some hours it works and then it doesn't. Serrated knife on an open wound is how I best describe the pain if not stable. I only have one stitch attached and then a few just wrapped around it so it can go in and out at least a inch and a half . I've spent a fortune on trying different bandages/taping. No my insurance doesn't cover supplies. I wish there was a support group

New nephrostomy gal here! Your tips and positive video gave me hope that I'll be ok with these tubes. Thanks!

Thank you so much for this video. Lots of good advice with a positive attitude. It's taken away a few of my fears of having one. Do you have hi help changing the covers/dressing? I live alone so I think this might be challenging. P.s. the cats are very cute too!

Absolutely fire!!! Big love from the UK

I’ve had a nephrostomy tube twice for a total of 10 months. I’ve found that just leaving my bag free in bed allows me to sleep better rather than pinning it. If I’m wearing shorts or tight pants I carry my bag in a fanny pack. I wear biker shorts with a pocket sewn in under baggier clothes. Biggest tip for showering if your dressing keeps getting wet is to cover the dressing with glad press n seal. I also put a command hook in my shower just below my waist level to hang the bag on as I have a glass shower door!

Beautiful soul 🍃

Hi Maiia, greetings from Puerto Rico. I am going to have a nephrostomy procedure tomorrow morning. My main worry was to stay away from contaminating it. I have to use it for 3 months. My main problem is that so far, my creatinine / bun would not decrease to a safety level. That is the reason for this procedure, blessings!

Preciate you

Thank you!

Love your video I too have 2 bags and a second chance at life.... Keep being you 🎉

I just had tubes installed in both of my kidneys, it is a difficult learning curve for sure. I will be using the safety pins in the future. Great idea and thank you for sharing. I have purchased some shorts that have holding pouches in both legs and the bag seems to droop a lot as it fills up and hoping the safety pins will help.

i just had a change of bag from the big one to the small one.. it bothers me because the small one has a tube that is so very slow to drain down the bag unlike the big bag.. and that i know how much liquid my kidney produces back when i still have the big bag because it easily drains down the tube to the bag.. im concerned that liquid in my kidney might get trapped because of that and i'd rather be uncomfortable carrying a bigger bag than be comfortable with a small but is hard on my kidney

They are two liters urinary catheter bags which you can use during the night or day if you are staying at home. It wont be even have full after a night sleep. And they have a longer tibe as well.

Hi Maya same tubs nephrostomy I using from January 2024 but for night I using big bag.ask your doctor and you can sleep all night. The tub helps me a lot my blood work getting better every week. Wish you all the best. Greetings from Vancouver ❤

Hello have a nf tube and a super pubic tube also so i have a bag on each leg and i use a thing they make called a (stat- lock ) that sticks to the skin just above the bag on my legs the bag connects to that and it sure makes life easier the stat lock can stay stuck to my leg for about 4 weeks and holds all the weight of the bag with no straps, get so e and try them, i bought some on ebay.

When will you under reconstruction

My doc just told me today that I will need this. THANK YOU, Soooo much for sharing your experience. I have to admit, I’m really quite nervous about the whole thing. You have helped. God bless.

I'm only 4"8, and the bag and tube they gave me was at least 6 foot long. I kept accidentally stepping on it because it was not attached with anything. No straps to hold it just a small safety pin. No instructions nothing from the doctor.

Do you have the transcription of the music?

Thanks Maya! I just got this and doing everything that you suggested! 🙏

Thank you! I've had two nephrostomy tubes put in and am doing everything by trial and error 'cause nobody has told me anything. Only recently figured out to not have the bags strapped to my legs while I sleep - when I do I wake up with a full diaper and empty bags. I have a fistula between the cervix and the bladder so, the whole point of the tubes was to redirect the urine so it wouldn't be going to my bladder. Second round with cervical cancer - nephrostomy tubes for life now, but I need to stop all or 98% of the urine going to the bladder and out the fistula. It's not great for my emotional well-being.

Good job at approaching this with smile and making this video I think you will do very well best wishes.

Thank you for sharing. Just got one and this was super helpful.

(there aren't larger bags for overnights?)

I have had one nephrostomy tube installed on my left side...eleven times. They all fail. I have to go to the ER in Victoria and wait from 7 hours...shortest period...to 13 hours for the 20 minute replacement process. There is no showering. I was myself in a bucket. I shampoo my hair in the kitchen sink with the sprayer attachment. I have to check the bag frequently to make sure the tube is still flowing....I have to check for the "squish". If it stops, it's an hour drive to the ER, where my time has no value and I risk hydronephrosis during every long wait. I have a load limit to avoid pulling the tube out. Since the tube is stitched to my side, this is a painful event. The max load for me, through trial and error, is five pounds or 2.2 kilograms...a six pack of club soda. I have had this device installed since April 15, 2023 and it is now Dec 23, 2023. The surgery to remove my kidney stone, the reason I have the tube, has been postponed until some time in 2024. This is health care in British Columbia.

The person who recommended sewing a large pocket into a bathrobe was brilliant! It works great for getting around the house. And, you can safety pin a pocket into a bathrobe to test the idea and get the location right for you. Now, if only normal people wore bathrobes out of the house!

Is this just a temporary fix or permanent? I've been having a stent placed and removed 4 times already and they wanna do this. But I see the reviews and everyone complaint about having it and the infections and etc. I'm scared and don't wanna get this surgery done because I'm my own sole provider I can't afford not going to work

Do you know how to change the bag?

I loved your video i just got my tube and seeing you smiling and having a good attitude really helped! ❤

Thank you so much for sharing such practical advice -- it can be so harsh when you learn you need to make a life adjustment like this and seeing real people coping truly helps those of us in this situation.

Have two nephrostomies. Cancer problems. Have had them almost a year. Not much help from medical....most of my help comes from online. Miss getting out in the yard and running with grandkids. Had a pouch around my neck and carried my bags but neck started getting sores. Now just strapped to the legs. Can not be very positive about them, but still alive.

I have a nephrostomy tube but am urinating without a bag. I just urinate in the toilet bowl

Thank you for sharing your experience with NT. I recently had one placed in my right side and am still trying to adjust living with it. Your video is encouraging and full of tips to manage it. Thank you so much.

Hi Maya ! Im facing similar issue and currently undergoing same procedure as you had couple of infections post pyeloplasty …. Can you update how is your condition…. Honestly im kinda scared

Informative I appreciate you sharing this

I have two nephrostomy tubes, & when I go to sleep, I just lay the bags in the bed by my thigh. They don’t necessarily have to be pinned on the bed in order to drain. The reason why I wouldn’t pin it, is because you can simply turn over and pull the tubes out of your back, as you alluded to. I don’t have any problems with them draining, because there is a backflow prevention valve in the bag that prevents urine from going back into your kidneys, if that is a concern. Just my two cents! Great video tho!

stunning!

Jeeeeezzz. Goosebumb. Omg... Can't talk anymore

Im supposed to have rhis done Oct 5th

Thanx Maya. I relate to you as I also have a PUJ obstruction. Am getting a nephrostomy tube inserted tomorrow morning Thank you for sharing. I like your attitude 😉😉😉. I have learnt a lot from you.

Hi good clip cute kitty 🐱

Hi where did you buy nephrostomy tube and how much. Because my sister need Nephrostomy tube

You still have your nephrostromy bag?

Thank you for sharing ! Have this procedure yesterday and trying to figure out how to shower .. your video helps a lot.

Fasten a pouch at side of bed ..no more pulling out tubes…was just released from hospital with two bags..figuring it out…seeing if bags come in larger sizes or stretches ..also a one handed release valve..pinch or flip style would be easier?

I had a nephrostomy earlier this week and for the most part I am fine--it's bruised and sore and the adhesive of the dressing is a bit itchy. The day of my surgery I had been throwing up literally all night the night before, horribly nauseous, with this dull, insistent pain in my back and side. Barely able to speak, I called the HMO Advice Nurse finally at 6:00AM, she consulted the on-call doc and I was told to come into the ER. Once there they rehydrated me, gave me intravenous pain meds and anti-nausea medication and within half an hour I felt dandy. Amazing how you can go from feeling the worst you've ever felt to feeling fine so quickly under the right care. Nevertheless, after a bunch of tests and consults with my various docs (I have stage IV bladder cancer, so there's a lot of 'em) the Urologist decided that I should have the nephrostomy to relieve pressure on my right kidney before they go on to do exploratory surgery to discover what is actually blocking my right ureterovesical junction, or rather to see if the calcification they found on the CT scan I had, is due to cancer or some other etiology. Surgery happened in the early afternoon and I was out with a tube and a bag by the evening. The insertion procedure wasn't too bad--being conscious when I was in the OR while they were prepping me for surgery wigged me out, cold hands and pens and iodine swabs, I was asking the nurses am I going to be aware of this because I don't want to be. Then they gave me Versed and Fentanyl and I was gone, I basically slept until it was all over and I had to get up off the operating table and back onto the gurney to be wheeled back to my ER room. After the pain meds wore off it wasn't too bad, I was moving a little gingerly but I dressed myself and walked out to my friend's truck and I was driven home. I spent most of the next day in bed, either sleeping to catch up from the night before or just resting, though I did get up and walk to a nearby pizzeria for lunch! The day after that through to writing this I'm back to my normal physical self, which is a bit hindered anyway as I have neuropathy from my right buttock down to my foot, but I can get around, cook, get out for walks and generally take care of myself, etc. I went back to hospital to have the site checked by a Nurse in the Urology Dept and she said it all looked good and then replaced the dressing. I agree with Maiia about not being squeamish about urine. Of course I hate having a bag and dealing with pee all day (I've had Foley catheters previously, too) but what're you gonna do? It is what it is, to use a redundant yet somehow exactly apposite phrase. I haven't tried pins, I just use a velcro belt around my waist and it drains just fine. Likewise I just keep the bag beside me in bed and it seems to keep filling. I would definitely get up and rip it out if I pinned it to the bed, I know. I did already forget once to close the valve on the bag properly, which was messy and unfortunate, at least I was at home alone. I haven't broached the shower yet, I've been getting by with a "lick and a promise" as my mother would have said, which actually involves being quite conscious of how I'm bathing myself. I'm supposed to be having surgery again next week, as I said, when they'll go in (no need to detail here exactly how this is achieved...😬) with a cystoscope to look at the offending site and probably take some biopsies, etc. If possible they'll place a stent or use some other procedure to bypass the issue which will obviate the need for the nephrostomy, but then I'll probably have a Foley catheter again for a week or so, so I won't be completely in the clear of bags and belts and valves, etc. There is a possibility that a stent or similar won't be feasible in my case, if so I will likely have the nephrostomy for the forseeable future. * I didn't plan to write this much, I was just going to describe my own nephrostomy insertion procedure since some posters on here appear to have horrible and inexcusable experiences--whereas mine was comparatively uneventful. Maiia's video is so helpful and comforting, I thought if I described my saga (I've only had it four days!) it might also offer some context for people who are about to, or have just had their own nephrostomy. Take care folks!

Thank you for making this video very helpful tips

Are you looking for more guests for your podcast? 😊