Hi,
I was just wanting some general advice please . I’m a wreck . My 12 year old son went into renal failure 4 years ago and can not have a transplant so we will be on heamodialysis long term . We are doung nocturnal Home heamo with the nxstage machine and chest catheter and all goung well. My son wants to use the fistula and get rid of chest catheter so he can swim etc .
He has a lower arm fistula which is 6 months old and we ( well the dialysis nurse ) have just tried to needle it for the first time today at the hospital with aim of making button holes .the nurses used topical Cream to numb it but it was still very painful and he cried through out which was hard to see . Anyway they couldn’t get it in properly as it seemed to clot at the end of the needle .it also moved . They are getting a scan tomorrow and we will try again . Starting asprin tonight too. It was a 17 needle ? He is of average height build of a 12 year older boy .
I was wanting general advice on how best to create the button holes . We are in the Uk and the nurses are very good but don’t created but use/create fistulas regulalry in children. I really want to do things properly for my boy and a avoid issues from doung this incorrectly due to not knowing.
I hope this makes sense .
Thank you so much
I hope Stuart will respond to your post soon.
In the meantime, the topical anesthetic needs to have time to numb the skin. If the nurse put it on and immediately tried to cannulate your son’s access, it probably didn’t have enough time to work. In the U.S. people put the EMLA or lidocaine/prilocaine cream on the skin over where they plan to cannulate, cover the area with plastic wrap for up to a couple of hours before trying to cannulate the dialysis access. Here’s an article that discusses use of topical anesthetics and dealing with pain and needle fear.
Here’s an article and some videos on cannulation that Stuart created.
Ok go to the home dialysis centeal and watch my videos on buttonholes. It is utmost importance to attach a 10 cc on the end and put one cc of normal saline in. Push the saline out and when cannulated put back pressure on the sirigen shown in the videos any further questions let me know
use tap cannulation just prori to cannulation
Hi there. So sorry to hear about this on such a young person. Does your son no longer urinate? Who convinced you home hemo was best option? We have patients on greater than 6 years without a change in their prescription with extraneal (icodextran). I know the world wants to push home hemodialysis on everyone and claim not everyone can do Peritoneal dialysis, but it’s based on person opinion and not science. I would never cannulate myself, my wife, my child. 30 minutes setup, 1.5 hour run, 20 minutes bleed time. That’s 10 hours a week attached to this involved with this disease. An entire pallet of supplies, and potential blood pressure drop.
We have to stop letting physicians not allow for patient choice. I am an advocate for quality of life. We provide people a life lived to the fullest by having 10 minutes of fill at night (no cycler). Drain in the morning attached to nothing, no machine involved.
There is a time and a place for hemodialysis. If your peritoneal dialysis membrane fails…we then give our patient HHD because it’s better than in-center. Please reach out to talk to our patient advocate, she’s been on PD 25 years ago, had a transplant for 20 years, did PD again, and now is on HHD with us.
One complaint I hear is about swimming in bathtubs. If you’re an Olympic swimmer then pd might not be optimal and that’s about the only factor. We have been having the surgeon do substernal pd caths so it’s not on the belly. Check that out too.
Joshua Dipzinski
888.kidney-0
ok, how are you coming along any more questions?
I’ve just logged back on … thank you so much for all the replies … I’m so touched and honestly so greatful - it helps so much to not feel so alone if you know what I mean .
The information is amazing as are the videos … I’m reading and making notes like I’m learning it like an exam !
The update from last week is the fistula scan was fine and the nurse got a needle in with the help of the scan as it showed the fistula was more superficial than she thought so the angle was changed and it was ok. He was in less pain and did tolerate it better and my son was really pleased it worked . Only did one needle and used one end of chest catheter to do the dialysis and will try both needles ok Tomorrow. The numbing cream helps but still it did hurt .
No thank you about the PD comments . he was on PD and we loved it - as travelled to my family with it and he was in school full time etc but it stopped working after a few years . he does not urinate and now has no kidneys so the heamo was the next step .
To be honest the chest catheter home heamo with nxstage nocturnal is great for him /us as he just sleeps and we have got quick at putting him on off and in a good routine with the supplies etc over the last 6 months . He has a normal ish life . He does good on the dialysis and eats and drinks more freely as it’s every other night and he does so much soccer and sport . I think that is why he wants the Cath out so he can do competition sport. Prior to the sudden kidney failure he did a lot of competition sport to a high level. Not Olympics standard but pretty high standard and that was a dream of his at 8 ! Me and his dad are not sporty types so struggle to
understand his love of sport and this is why he wants the line out so he can play /do more sport with less worry about the line. Although he will need to be careful with the fistula too.
When he first became ill he had sudden severe high blood pressure leading to seizures and him being put into a coma in intensive care for a while. We didn’t know if he was to have brain damage on coming round and nearly lost him a few times . So even though kidney failure is not what we want and so hard it could have been so much worse for him . He is a very resilient child tbh ( even compared to his older healthier brother ) so we gain some strength from him .
Sorry for goung on !
They trying again this week to establish the button holes and I will share this material with the unit as it looks so good and hopefully we can work together Thanking you for your help and time and knowledge and advice . It has helped me more than you will ever know .
I’m hoping tomorrow is ok and will keep you updated.
swaths did you get his buttonholes going?
did you get his buttonholes established?
I am sorry about your PD experience. New technology exists to prevent that decreased ability to stay in peritoneal dialysis long term. Using dextrose free solutions prevents excessive changes in membrane. Not using 2.5 and 4.25% solution prevents excessive fluid removal that causes loss of urine function. Best of luck with the buttonholes. I usually try to do 6-8 times with sharps before conversion. The Siracusa seem to be a little less harmful on the skin vs the creams.
Thanks
did you get your buttonhole established?
**go to YouTube and type in Stuart Mott Touch cannulation video this video shows the why to cannulated and maintain buttonhole’s **
i**f you have any questions call me at 573-826-8237