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.
[quote=Berkeley_Barb;11664]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
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[FONT=Comic Sans MS][COLOR=darkgreen]Barb,
did you notice a difference in how your husband felt on short term daily versus nocturnal? Just wondering if the switch back to nocturnal is because he felt better with nocturnal or that it will be easier on you. Both of course are important issues.
He must be a rather large man to have to run for four hours six days a week? That is one heck of a time commitment.
Is he too sick to manage his own treatments? My wife is a full time attorney. When I first came home on a Fresinius machine five years ago I was either too exhausted from working during the day and then later just too sick to manage my treatments so my wife was doing the same thing that you are now - working full time and nursing me in addition to caring for our 2-year old son. Because of that I changed to a PD cycler plus manual exchanges so that I could manage my treatments and thereby free up some of her desperately needed time. That worked for a while. In fact we even adopted another baby while I was on PD.
But, eventually I became too sick and she was doing more of setting up my machine and helping with supplies. So, after my most recent failed transplant I went to in-center which of course didn’t demand any of her time which was great.
I came home on NxStage in order to improve my long term outcome and short term health. But in my mind, the only way I could come home was if I didn’t create more of a burden to my wife. Since May I have been managing my 2.5 hrs - 3 hrs runs six times a week on my own. The hardest part for me was cannulation. But I went to the store and bought a can courage and ever since have been fine.
Maybe there are aspects of your husbands dialysis that he can take over to ease your burden. I know if he is like me he must feel incredibly guilty to take up some much of your time for his own benefit. To me y wife’s time is precious. I would much rather have her spending time with our now 7-year old son and 2-year old daughter than worrying about my dialysis. Also, while she is reluctant to take time for herself I know that it is vitally important for her to take her own time. Al too often our caregivers give up too much of themselves in order to save others and when this happens they can lose most of who they are including their health.
I hope returning to nocturnal works for you both. Peace, Erich
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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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[quote=Berkeley_Barb;11719]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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Barb,
I’ve been hemo dialyzing using my Stage by myself since April. I too have zero function but thankfully only hang 4 bags. I weigh 88 K. Unfortunately the only time my wife seems to get away is for night meetings which is away from us but still work. We are working on having the two of us get away.
The only two times that we have been away from our little ones is when she gave me one of her kidneys and when we went to Wisconsin for a cadevaric kidney. We just need to figure out a good babysitter for our darlings since family just isn’t available. We are working on it.
As a family we’ve still maintained a decent travel schedule having travelled to Jamaica on PD (we carried a weeks worth of dialysate wth us - had a bit of time explaining my boxes to Jamaican customs), we’ve done Orlando multiple times both on PD (dialyzing right in the Parks at Diney World) and hemo at DaVita Celebration a wonderful facility. And most recently, Lancaster, PA. That I would have to say was the most relaxing being able to come back to the room and hook up to my Stage after a long day of visiting.
I will pass on your salutation to Andria my wife. I think too often caregivers do not take the time or know where to find other caregivers to lean on for support. I think caregiving can be a very lonely world.
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