Woke up after a torrid and fairly sleepless night on Nocturnal feeling slightly queasy. Tried to wind down the clock and UF as far as it would allow then fainted in the bed! Forgot about giving saline! How bloody stupid!!! Too wiped out to think straight.
Husband just back from the loo was apparently extremely distraught seeing wife with eyes rolling and breathing funny also forgot about saline and I was in no condition to communicate.
THEN noticed a blood drip coming from where venous line goes into the dialyser. I had been losing blood ALL NIGHT! Crikey!
Finally surfaced enough to sqauwk “saline”!! Then tried to reinfuse all blood that was in line back into me and could only do half for some unknown reason. Would not reinfuse or empty Bibag.
Musn’t have screwed line into dialyser tight enough. Very scary morning.
Consequently, feeling rather “less than perky” this morning but I am alive amazingly…
Hi y’all,
Wow, I’m really sorry to hear that you went through all that, Beachy. I take it you are not using a bedwetting alarm to alert you to any fluid spill (including blood) while you’re sleeping? My sense is that these are very common in the US, but I don’t know about Oz.
Wow, pretty scary, beachy- glad you are o.k. I guess double checking to make sure all connections are tight is very important. And emergency procedures should be reviewed for patient and caregivers.
Things like that is what scares the heck out of me about Nocturnal…
The same thing can–and DOES–happen in-center. The FDA keeps a log of dialysis incidents. Since low venous pressure (from a line separation or needle pulling out) doesn’t trigger a machine alarm, it’s possible for quite a lot of blood loss to occur before anyone notices, and bedwetting alarms are generally NOT used in centers. This is one reason why it’s vital not to ever cover the access arm during a treatment.
For home nocturnal, because blood loss during sleep is what everyone worries about, alarms are usually used, which means this treatment is quite possibly safer than any other type.
That’s scary. Do you not have a blood leak alarm on the floor under your dialyzer, or is it that it wasn’t triggered? This is mandatory here for nocturnal, and all the alarms must be checked for proper operation prior to starting treatment every single time. An alarm that hasn’t been sounded prior to treatment is an unreliable alarm.
Blood leaks at the dialyzer connection can happen not only if you don’t tighten enough, but if you tighten too much. In the latter case, it can deform the threaded part of the plastic connector and then it may leak slowly. Same thing at the bloodline to needle line connection, and also anywhere in the blood circuit where there is a connection, even at the saline administration line where overtightening can crack the connector.
When I was on nocturnal, I always tried to stay awake the first hour so I could observe everything about the treatment, including paying special attention to those connectors. I used to pay very close attention to the bloodline/dialyzer connections during priming and recirculation with saline. If I noticed any water at all, I dried it and looked again. Most of the time it was just residual saline/dialysate from when I connected the dialysate lines to the dialyzer. But I remember a few times when I decided to tear down and start over because of a potentially flawed connection. Any time I happened to wake up, I took it as an opportunity to look everything over. I kept a little flashlight near my bed so I could quickly check connectors, needles and tape, without turning on the lights. And all values on the machine too. I usually used the opportunity to check my BP as well. And it’s not just a matter of user mistakes. There can be manufacturing problems that slipped through, and you can sometimes have a bad set of bloodlines. Always pull on the connectors to ensure they are bonded well to the bloodlines themselves, and ensure there are no crimps anywhere in the lines. If there are, don’t use that set, and report it.
I’m sure that this wasn’t the case here, Beachy, but for everyone, don’t become complacent as you gain experience. There is zero room for mistakes or inattention when it comes to hemodialysis, at home or in-centre, daytime or nocturnal. You absolutely have to ensure there are no blood leaks at any connection point before you go to sleep (and this requires a certain amount of running time - at least 30 minutes in my opinion). You have to have working alarms (and batteries). You have to pay special attention to blood pressure. If it’s on the low side before you start the treatment, call your nurse. It may be advisable to skip treatment that day or night.
It’s very important that as home hemo patients, we don’t delude ourselves about the risks involved.
Pierre
(just dropping in)
Thanks folks for your support. I think I actually cross threaded the connection and would have lost around 500mls. Hard to tell exactly as a even a little bit of blood makes an horrendously scary mess. Imagine what a real murder scene must look like, how could they ever hide all the evidence.
Had Hbg tested and I was okay. Has made me realise how important double checking everything is. Not my strong point as I tend to be a bit of a slacker, but not any more!!
We are only given one blood detector alarm for the arm, but I will be definitely lobbying for another.
Hey Pierre, if I keep telling scary stories will you keep posting? Thanks for the sound advice.
Cheers
Pierre, thank you so much for your detailed & sooo knowledgeable reply. You have some wonderful advice to share. Someone recently filled me in on the dialyzer-to-bloodline connection issue, and it does sound as if an alarm under the machine (at placed beneath the dialyzer) should also be mandatory.
Beachy, I’m so glad to see you back here and to hear that you’re okay! I’m guessing that having gone through this once, you’ll be extra-careful in the future, and so will anyone else reading this thread. Lots of folks can learn from your experience.
Thanks Dori. You too Beachy.
I would hate for a few incidents to put people off nocturnal hemo. With the proper precautions, it’s safe. It’s no less safe than short daily hemo or in-centre hemo, both of which have their own safety issues.
Consider this: since the transplant, everyone keeps asking me or telling me that I must feel so much better. I have to be honest with them and say that no, I don’t really. Why? Well I try to explain that I was on something called daily nocturnal hemodialysis, and that it kept me feeling pretty darned good. It meant that even a transplant didn’t offer much improvement over that. Of course, I still prefer the transplant, if only because I don’t have to be on dialysis or have my apartment cluttered with a bunch of supplies.
The type of alarm they provide here is a commercially-available water leak alarm which you just plop down on the floor where you want it. It’s made by Zircon. I’m not sure if the alarms are recalibrated for blood, but they are very sensitive. I had one under the R/O (because my R/O was in another room) and I put the second one right under my dialyzer. I never had any leaks the whole year and a half, but I did take a lot of precautions as I explained. Look, I’ve never been a details type of person in my whole life, but I didn’t take any chances with dialysis, no matter whether it was short daily or daily nocturnal.
[QUOTE=Pierre;10964]Thanks Dori. You too Beachy.
I would hate for a few incidents to put people off nocturnal hemo. With the proper precautions, it’s safe. It’s no less safe than short daily hemo or in-centre hemo, both of which have their own safety issues.
Consider this: since the transplant, everyone keeps asking me or telling me that I must feel so much better. I have to be honest with them and say that no, I don’t really. Why? Well I try to explain that I was on something called daily nocturnal hemodialysis, and that it kept me feeling pretty darned good. It meant that even a transplant didn’t offer much improvement over that. Of course, I still prefer the transplant, if only because I don’t have to be on dialysis or have my apartment cluttered with a bunch of supplies.
[/QUOTE]
As the wait list for transplants here in NSW is around 7 years I do apprecialte what you are saying, Pierre. It gives me hope and confidence that doing Nocturnal definitely is worth the effort (okay so I don’t do daily but it is still great). What happened to me is just the kick in the pants I needed to lift my game.
Stay well and enjoy each day.You deserve the best.
Beachy, One of the nurses that is teaching us the Nxstage also taught us the Fresienus for nocturnal. She drilled and drilled about making sure all connections are tight. ( Some times I need a plyers to loosen then when needed) She also drilled us about the use of alarms. Our RO was in a tray right next to the dialysis machine and when I put my hubby on and moved the dialyser to the right over the tray it than was right where the alarm was.
Let me tell you the alarms work. A few times the RO leaked and what a screech!
Just keep checking and double checking all connections. Nocturnal is truly wonderful. Keep smiling and Keep up the good work. Dialysis is the best.
Pat
Thanks for stopping in with the valuble safety advice, Pierre. Interesting that you say that the transplant does not make you feel better than nocturnal did, but that nocturnal kept you feeling very well. It seems transplant would be a whole lot less stress, though, since with txs one has to always protect oneself from tx errors, handle machine upkeep and inventory, deal with one’s emotions and the 2 cents of medical people/caregivers and be completely regimented etc. It is like a full time job.I would think someone with a transplant would feel much more free.
A transplant is great for what you say, ie. getting us off dialysis. Home dialysis is a lot of hard work, a lot of responsibility, and it takes a lot of sustained motivation. I did it because it was worth it for me. I knew I could be in a for long wait for a kidney after one failed live donor evaluation, and I wanted to put all the odds in my favour in terms of staying as healthy as possible while I waited. And after spending 2-1/2 years on in-centre hemo, daily nocturnal hemo gave me a lot of my life back. It really did. Luckily for me, I don’t think my wait was unusually long. It was just under 4 years. Many people wait longer.
But I think people should be realistic about a transplant. Unrealistic expectations are bound to lead to disappointment. It’s not a panacea, and while you don’t have to deal with dialysis, there are other challenges, especially the first 6 months to a year. I still think a transplant is the best treatment for kidney failure, though - as long as you don’t expect everything to be rosy at all times.
Pierre