I am so pleased to find a group that not only has some of the same problems that I have but who also can share their wisdom. My husband did 6 years of PD and after losing both of his kidneys to cancer, he is now on hemo. We did the center bit for about 6 months and then were accepted in a clinic that taught us home hemo. We are on NextStep. When we started out at home we went directly to nocturnal but we had problems with clotting and alarms. We were changed to daytime and now do 4 hours a day/ 6 days a week. Besides being a full time high school teacher I am also his nurse. I have to be home by 4:00-4:30 to get him on the machine so I can get to bed at night. We have now been on daytime hemo for 5 months and I would again like to try nocturnal. I have all summer off and I thought it would be a great time to try. My questions: for those of you on nocturnal, how long do you go? We were trying 8 hours and had more problems. Had 2 major blood clots. If we did 6 hours would that work better? What is the trick to going so long and not having blood clotting (we dripped heparin but it was not always successful). Hope to hear from some of you who successfully do this and can share your knowledge.
I need some clairification about what happened when the “blood clotted” - what exactly clotted and what were the details of the treatment when it happened - Blood flow, dialysate volume, Filtration Factor, etc… Also it’d help any of us answer your questions if we understood when in the treatment it happened and also how long you expected the treatment to last.
The other clarification that would help me understand your situation would be to understand what your heparin method you used. You wrote “we dripped heparin but it was not always successful”. Did you use a machine? At what rate did you give heparin? Not successful?
And - another question - do you recall your husband’s heparin protocol when he ran incenter?
In general the more dialysis the better. I think doing 6 hours is better than doing 4 and doing 8 hours is healthier than doing 6. However, against the marginal clinical improvements you have to weigh any logistical pluses and/or minuses.
It sounds like nocturnal would be a good fit so long as you and yours could sleep. Given that dialysis will never be convenient, what on off schedule would work best with your work schedule? Could you go back to sleep at 4 AM after getting you husband off the machine? One last thing I have to ask (so many questions) since I am someone who takes total responsibility for his treatments - why do you have to set up the machine? If he had the NxStage all set up he could be on within 10 minutes of you getting home, getting done after 4 hours +30 minutes of post-chores.
Bill
Thanks for your answer. I had problems with blood clots twice. Once I was disconnecting to give him back his blood. When I took the red connection off, to move it to the saline line, a glob of clotted blood fell out. Another time when I again was giving him back his blood we saw big clots of blood in the line. Again I discontinued. One time I attribute to the heparin pump, that didn’t work, although I had set it up. This was in the beginning of our at home experience, and I had only one day instruction to use the drip machine. I had the rate, time mix correct but it seems that you have to set the syringe up in a special way I had not done it correctly. We also had a few nights when the machine alarmed a lot. Even though he had done PD, he had problems sleeping with the Winton catheter and the moisture alarm on.
The incenter we attended was happy about me being at his treatments and they didn’t answer many of my questions. I knew we were going to eventually use at-home so I tried the best I could to understand the treatment. I wasn’t always at the beginning of the treatment but I did pick him up every time he was there. In fact the nurses tried to discourage us from doing home hemo…they said is was not safe.
My husband and I decided last night that we would try nocturnal this summer. I want to go back to the clinic we trained at and get another lesson on using the heparin drip machine and the alarm. I feel more confident about the NxStage machine from our present use.
My husband puts the machine up…bags and will get do the prime but he wants me to do the tubing etc. It takes me about 15 minutes. He has a tremor in his right hand and is afraid that he would contaminate the tubing. When I have time this summer, it would be a good time to go through the whole procedure with him and see if he could gather some courage doing the tubing.
My summer plan is to start at 6 hours a night….I can do back to sleep if I don’t have to worry about getting up again and then try 7 and 8. I am glad to hear that people are successful using the longer treatment. BTW he uses 25 dialysate and we were using 250 rate for 8 hours.
I have never heard of clots forming in the way you described – usually if you use too little heparin the artificial kidney will clot, meaning the small, hollow fibers that the blood travels through will clot off or the other area where it is common to see clotting on a standard machine is in the drip chambers – right at the air/blood interface.
The NxStage doesn’t have drip chambers so I would have guessed that you’d first see clotting in the artificial kidney. I’m having trouble imagining how a clot could form at the red connection – which it sounds like you’re saying it was right at catheter. How big of a glob are we talking about?
How much heparin do you use for a bolus? And what rate of infusion did you try to set the machine for? Those infusion machines are a bit tricky. It is always a good idea to visually confirm it is working as you expect. If, like me, you are trying to infuse 1.5 cc an hour you should be able to confirm that .5 cc has been infused after 20 minutes.
After your four hour treatments is the artificial kidney very streaked?
The blood clot was right at the connection to the catheter. When I disconnected the red tubing, a 6 inch clot of blood came out of the catheter connection. I had only been using the machine for about 4 weeks although we had 8 weeks of training. I was surprised at myself in that I kept my cool and immediately disconnected him. I would rather he lose some blood than take that clot to his heart. The 2nd time he clotted we saw clots floating in his lines…I am not sure which line it was.
On nocturnal his heparin bolus was 3000 start-up and 4000 in the heparin drip machine. His artificial kidney during the 4 hour treatment is very clear, very little clotting. Tell me about the moisture alarm that you have to put on your site. I understand the reasoning but there has to be an easier way to wear it. My husband’s site was very disturbed by the weight of the alarm. Does it look like they might find something lighter to wear on the site?
Wow that would be disturbing. Was the artificial kidney clotted too? Do you recall were your pressure readings higher that run?
I wasn’t aware of the need to use moisture alarms with a catheter, particularly during day time dialysis. I was under the impression that the moisture alarm was to protect from a needle coming dislodged, can a catheter come disconnected? I’ve only used the moisture alarm when I did nocturnal.
That is not very much heparin. 3cc would be half my bolus and 4cc over 8 hours would only be .5cc per hour, one third my rate. How much heparin are you using for four hour runs?
We have been using a catheter for nocturnal for over 6 years and don’t use a moisture sensor. We have what they call locking boxes that fit over the connection of line to catheter. This prevents the lines from moving, therefore unable to unscrew themselves. Another thing I have heard of is once the lines are attached taping the connection, this will also prevent the lines from unscrewing. I am with Bill though, I wouldn’t think a line could come unscrewed if your running day treatments.
It’s not usual for me to have a clot in the catheter at the beginning of treatment but only once did I have one at the end of treatment and that was when I forgot to turn the heparin pump on. Like Bill I have never seen clots in the lines, On the Fresenius I have seen them in the drip chambers and dialyzor but not in a line.
Have the doctors and nurses talked with your husband and you about the benefits of getting a fistula or a graft instead of using a catheter? Research has shown that catheters are prone to having clots both small and large, having higher infection rates, and making it more difficult to get adequate dialysis. Some people cannot get a graft or fistula, but any type of access can be used for any type of home dialysis. It may ease your mind about the clots and give your husband better dialysis if he had a fistula or graft.
So far as his catheter is concerned, what did the training nurse tell you about how to prepare the catheter before and after dialysis? I remember nurses flushing the catheter lumens with saline before dialysis and I believe they flushed with saline and and packed the lumens with saline and heparin after dialysis. I’m not sure if this is still the procedure, but hopefully one of the patients on this board can tell you what he/she does with the catheter
At the beginning of treatment we flush the arterial line with a hep bolus.
We flush the venous line with 10cc of saline.
End of treatment we instill 10cc of saline in each line.
We instill 2cc of heparin in each line. After treatment we use a stronger heparin for installation.
It is not uncommon for patients to be put on small doses of coumadin to prevent clotting. We used to but don’t anymore.
Ralph is on nocturnal Nxstage now and we are using the same amount of heperin as we did on the Freni. I put 8CC heperin in a small saline bag.
That run’s at 14cc per hr for usually 6.5 or 7 hrs. I stop heperin 1 hr before end of treatment. I also put 5.4cc bolus in the Venus line and 6CC saline in arterial line to start. We have had no problems so far.
I think you are not using enough heperin. But please check with your nurse/doctor for what is right for you.
All I know is we have a wonderful life with the nxstage! and can’t wait to start traveling.
Pat
They tried to put in a fistula and it didn’t succeed. He has small, rolly polly veins. Although we understand that catheters have more problems it is the only way he can be connected. We have been trained how to flush at the beginning and flush at the end with a heparin dose in the catheters. We do not use the moisture alarm during the day runs but we were trained that we had to have them during the nocturnal runs. He finds the alarm hurts because it tugs on his catheter.
There is a huge partnership between government, ESRD Networks, and providers to increase the percentage of patients with working fistulas. You might want to read and share this information with his nephrologist and vascular surgeon if they don’t already know what’s available to help in this effort. For example, vein mapping prior to attempting to put in a fistula increases the chances of creating a successful fistula. http://www.fistulafirst.org/
There are several types of moisture alarms. What type does he use?
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I wasn't aware of the need to use moisture alarms with a catheter, particularly during day time dialysis. I was under the impression that the moisture alarm was to protect from a needle coming dislodged, can a catheter come disconnected? I've only used the moisture alarm when I did nocturnal.
It seems that because the catheter is so delicate (it goes directly into his heart) that we have to make sure that it is protected. I have never seen it disconnect but it seems that it has happened.
I wasn’t aware of the need to use moisture alarms with a catheter, particularly during day time dialysis. I was under the impression that the moisture alarm was to protect from a needle coming dislodged, can a catheter come disconnected? I’ve only used the moisture alarm when I did nocturnal.
The moisture alarm is also use for the catheter. I guess that there is a worry about it disconnecting. Since the catheter is so delicate, it goes directly into the heart, and it is held in by 2 stitches, it is easly disturbed.
Actually he is not very large. Since he has no kidneys he has to use 5 bags. This takes over 3 hours. BTW: Tell your wife, from one caregiver to another, I think she is great. You are lucky to have a wife that is willing to help you. The one reason I would like to go back to nights is that it gives me a little time to my self after work. Now I can’t do any after school stuff with the kids nor can I attend meetings. My administration was been kind to me, but I would like a little time to myself. Let me ask a question…When your wife needs to be away from you…how do you get your dialysis done?
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I have been heartened to read your comments. I am a home hemo patient. I work every day and dialyze every other night for 3 hours. I was on the Aksys machine and loved it but with Noreast contracts folding I went back to Fresenius,which is like going from a computer to a manual typewriter. My husband does cannulation and caretaking during dialysys. Set-up goes to whoever gets home first. I have had lots of guilt about the time spent, now I look at it as time he can do other work, or time spent together. the guilt wasn’t getting either of us anywhere. I too wish more choice for him around his time. I go to the center for treatment when he has to travel anthat is actually a break for him. I very much would like to work with a portable machine in order to be more flexible in travel. I need some feedback about the Nx Stage machine and time spent in treatment. I am obese at 330 lbs. I have a 400 blood flow and use 3500 heparin bolus. What could I expect if I increased to daily treatment on the NX stage? I have an AV fistula
lwadsworth,
Hubby Ralph is 120K. We were very concerned about how Nxstage would do for him. He dialyses 6 nights a week. We use 60L of fluid with the Pureflow or a back up treatment when needed of 45L using the bags. He has been on Nxstage since Oct 30. and feels better than he did on the Freni doing 6 nights a week. He is on nocturnal so he sleeps while on Nxstage. On the days I work we are usually on about 9:15pm and off around 5:30AM. This allows me to get him off and put a new bag in the Pureflow, take a shower and go to work. We use a machine that they use in the hospital to deliver the heperin all night. We also use a bolus of 5.4cc in his Venus line. His blood pump speed depends on the hours he is on anywhere from 350 to 430.
I would say please talk to you doctor and see if you can do the Nxstage nocturnal. Nxstage doesnot have the OK for nocturnal yet, We are kind of testing the waters for size ( 120K). Good luck to you.
Pat
[QUOTE=Beth Witten MSW ACSW;11693]Have the doctors and nurses talked with your husband and you about the benefits of getting a fistula or a graft instead of using a catheter? Research has shown that catheters are prone to having clots both small and large, having higher infection rates, and making it more difficult to get adequate dialysis. Some people cannot get a graft or fistula, but any type of access can be used for any type of home dialysis. It may ease your mind about the clots and give your husband better dialysis if he had a fistula or graft.
So far as his catheter is concerned, what did the training nurse tell you about how to prepare the catheter before and after dialysis? I remember nurses flushing the catheter lumens with saline before dialysis and I believe they flushed with saline and and packed the lumens with saline and heparin after dialysis. I’m not sure if this is still the procedure, but hopefully one of the patients on this board can tell you what he/she does with the catheter
My partner has been doing Nightly home hemo dialysis for about 5 years. She has been using a cathater all this time… We have not seen any blood clots at the cathater… Using the Fresenius for about 4 1/2 years and only remember seeing clots in the venus chamber once or twice when I forgot to turn on the heperin pump and the dialyzer got clotted and had to remove her from the machine… But never any clots at the connectors at the cathater.
When you extract the heparin from the cathater do you see any clots in the syringe??? Squirt the blood from the syringe and see of you are getting a clot. there should be one everytime. If you are seeing clots I can’t see how they are getting past the dialyzer (filter). When we connect the patient I extract the heparin that is in the cathater lines and once a week flush the lines with saline before hooking up the patient. When I extract the heparin there is always a bit of clot in the syringe. (every treatment) the reason for the flush is to check if the cathater is working properly. If you feel any resistance in the syringe during the flush it is likely the cathater is not working properly and will have problems doing any treatment. Had that problem when we had to have the tips of the cathater replaced… They just loaded the cathater lines with TPA and it cleared un the clot in the lines. So the second time she had the tips replaced I had them load the lines with TPA and no problem with clotted line.
as for as the lines becoming disconnected… We have not had that problem also no infections or any problems. do not use anytype of leak detector. What we have found that works for us…
Before I attach the lines to the cathater:
I have the line connector wrapped with gauze soaked with betadine solution.
after 3+ minutes I attach a 3cc syringe and extract the heparin from the line. Keeping this betadine soaked gauze wrapped around the syringe & cathater connector until ready to hook patient to machine lines. do both red and blue lines that way.
then after I hook the lines up. I wrap a piece of tape around the connection and then wrap it with the betadine soaked gauze. (prevents infections)
I have a plastic box that I made that fits over the connections that is wrapped with the gauze. This keeps the gauze from drying out so when we get off after 7 hours the gauze is still wet with betadine.
As far as using heparine when we were in training for both machine Fresenius and NxStage while at the clinic we tried different bolus and loads until we were sure there was no clots in the dialyzer after the treatment. I have since leaving the training reduced my bolus and load/hour… as long as the dializer is clear of clots after the treatment. right now i bolus .8cc and set the heperin pump to .4cc/hour… for us after 7 hours the dializer is still clear except sometime there may be a streak in the dialyzer…
Hope this information helps
Hi Hemo Helper!
Although my family member on dialysis does not currently use a catheter, I am saving your post as it was full of valuble sounding info. that either, we, or someone we run across may need at some future time. Was the technique you described what you figured out yourself or the way you were trained? My conversion math is not too good- is .8ccs of heparin bolus equal to 8000 units?