I Really HATE Dialysis!

[mcmkids]

OK, I am really disgusted now! My husband has been on PD for 2 months. At first, all went pretty well and then came the "low drain volume" alarms...no matter what he did, what position he was in..."low drain volume! So we went to the hospital so that he could have an X-ray. "OK! Now we see the problem!" they say, "your catheter is all kinked and coiled up!" So we are sent to the best surgeon they have, supposedly the guy that the ENTIRE CITY of Philadelphia is being sent to to untangle these bad boys. We meet him, "no problem" he says, "I will fix you up next Thursday!" Great! we bide our time until then, go in and my husband has the laparoscopic surgery. "Well," doc says to me post op, "I really didn't see anything major going on, no adhesions, no scar tissue. I just tucked it back in where it needed to be. I can't promise that it won't happen again." WHAT!?! Are you kidding me!  So we go home and the next day I am instructed to use a manual bag to flush him out and OF COURSE...slow, slow, slow draining AGAIN. Call our PD nurse (who is a wonderful nurse and we absolutely love her) who says, "he needs to poop." OK, so I ply him with dulcolax and he goes, I mean he is all pooped out.  I flush the catheter manually and we are really cooking! Draining fine. Now we are ready! So I get the cycler set up last night and we have lift off...until drain 1 of 4 when, you guessed it, "low drain volume". So now I am in tears and ready to shoot the machine and my husband (who has been through too much this year already) is ready to jump out the window!  After about an hour and a half of changing positions in bed, I make him get up to walk around and the thing starts draining fine.  He gets back to bed and lays on his right side (which is where he HATES to sleep because it is just very uncomfortable for him) and the thing doesn't make another peep the entire night. But...he didn't get any sleep either, because he was so uncomfortable. So here's the thing. There has to be a way that he could get the dialysis therapy he needs without having to stay awake all night. (I know we could probably do manuals during the day, but since we are so busy and active, we were hoping to avoid that!) Any ideas? Had we not been through open heart surgery, cancer, chemo, and now kidney failure, I think we would be a little bit better sports about this whole thing. But trust me, we have had it!  Sorry for that! Just needed to vent!

[drinkboy]

Sorry to hear about all your problems you are having.  I'm sure someone here will have some advice to offer for the drain issue..unfortunately, I can't really offer much on that except to mention it to your nurse/neph that you're still having the issue and see if they have any other ideas.  I hope you get the issue resolved soon.

[paul.karen]

What a mess for you both.
Im still predialysis but will be using the cycler as well.

Can he prop pillows under him while he sleeps to be in a more upright position.  That may help.  I hear siting up helps but that defeats the whole night time dialysis thing.
Maybe get him a LARGE bedpillow so when he does sleep on his right side he can lean back on the pillow for support.  Just a thought.
Have you tried to lower the cycler lower then the bed i hear this works sometimes.

Best of luck to the both of you.

[thegrammalady]

i don't have any answers for you because i do in center nocturnal. however you do need    feel free to vent any time you need to.

[David13]

It sounds as though that surgeon didn't do a good job.  He wasn't looking for adhesions, he was supposed to be getting the kinks out of it.  Did he mention if he found any kinks that he was able to uncoil? 

I would give his office a call and tell him that your husband is still having low drain alarms.

[mcmkids]

Thanks guys!  I spoke to our PD nurse again today and she said "no" to the sitting up for dialysis because with just having gone through surgery, she wanted to keep his intra abdominal pressures down, so she wants him to be lying down for his dialysis for the next week. I had suggested manual exchanges for the time being, but she said that we should just plug away at this for now. We are going in for his regular clinic appointment this Friday, so I can speak to the nephrologist again. If this problem keeps rearing it's ugly head, they will probably send him for another abdominal x-ray to see where the catheter is this time and then go from there. Just having the forum to actually let this all out helps me!

[paris]

That was why Epoman gave us this great place to come to.  Sorry things are not getting better.  You are among friends here and we all care. Come and rant anytime you need to.   

[G-Ma]

 

[MandaMe1986]

I'm sorry to hear about this. Anytime you need to come and let some stuff out do it.  Don't hold back.  I feel so bad for you two. 

[mcmkids]

Well, so far it has been BEARABLE. My husband is still getting some alarms, but it is usually when he hasn't had an adequate BM (so he is full of s--t!!) He has very little tolerance for all of this, so in the middle of the night, if he can't get the machine to quit alarming, he will just turn it off! I know what you are thinking, but he seems to feel BETTER when he skips a day or so. He has always felt better with more retained fluid and feels weak and drained when the machine pulls off too much fluid. He has been very, very lucky because his adequacies are usually good, he is still putting out lots and lots of urine (I am not kidding, I took home 2 jugs for his 24 hour urine this time!) and he is feeling well enough to play golf, do yard work, and umpire little league baseball! He had his PET test last week and we haven't heard any results yet. I just hope this all continues. We were given a list of local hospitals to contact to get on a list for transplant. Since we live just outside of Philadelphia, we have several excellent choices. Take care everyone and thanks a bunch for all of your support!!

[Hanify]

I also had low flow not long after starting with the machine, and they discovered the tube had flipped upsidedown.  I had to have an op, but they actually pinned the tube down to where it should be so it couldn't flip up again.  Haven't have the problem again (a year later).  Keep on at them.  I find often I feel like I'm hassling them, but Paul (my husband) steps in and won't take any rubbish.  You sound fantastic too.  Keep insisting!  You both should not have to put up with alarms at night.

[mcmkids]

The machine really doesn't alarm unless Matt hasn't had a BM. He really cleaned out yesterday and he had great dialysis last night with no alarms. The two nights prior were not as nice. He is on a pain patch for an old work injury. Because it is a narcotic it is constipating, so that is another fly in the ointment! The tube was revised once already and only about 6 weeks or so after it was placed.
I am a nurse, so I kind of handle everything. I set his machine up every night, order his supplies, disconnect him every morning, get his weight and BP and keep all of his tracking. The only thing I refuse to do is connect him to the machine at night. He is a night owl and I go to bed earlier than he does, so I have everything set up and he can connect himself when he comes to bed. I go to every clinic appointment and speak up if he doesn't. Everyone there knows I am a nurse, so they speak very plainly and "keep it real", because I am one of them.
His other problem is body image. He hates the tube. He calls himself "the science project" because he has an implanted IV port from when he had chemo last year and now his PD catheter. It is getting better as he gets more used to it and I got him a few of the belts and he wears them especially if he is going to be more active. All in all, he really has done remarkably well considering the year he has had!

[willowtreewren]

Your husband is lucky to have you by his side. 

He has so much going on. Come visit with us any time you want. It's great here. 

Aleta

[Hanify]

I can understand his point about the body image thing.  Tell him he's not alone there.  The funny thing is, for me, I had always been a bit overweight and was constantly making pathetic attempts to diet etc.  Was always a size 16 pretty much.  When I got sick I lost 25kgs, and turned into a size 10 which was what I'd always wanted. BUT in the meantime ended up on dialysis which means the 2 kg tummy, and a bloody tube.  So I'm finally skinny for the first time in my life, but I can't really enjoy it!  Honestly, it doesn't seem right eh?  Mind you, I still get a kick when a doctor or someone says "well, you're very small so that's good" - I've never been called small before.