Since the question has been raised, what do patients (only, not professionals) think the difference is between adequate and optimal dialysis. What I’m curious about is how far will people go to get the best available outcomes. What will one sacrifice? Please consider that everything in life is reletive and to achieve the best in one thing might mean giving something else up. That includes things like how it affects other family members as well in addition to how it affects you.
Hi Rich
I think I get your question. For me when I started dialysis 27 months ago I was determined to have the Gold standard ie all the Nocturnal I could get. Only when reality set in, I just could not do it.
The whole process of doing dialysis was just so alien to me (I started training for Nocturnal my first day of dialysis) I needed those nights off to sleep and refresh (and have quality time with hubby) so for me optimal is a balance of pretty bloody good blood tests, feeling well and having 3 nights off a week.
Now 2 years later, I might be getting towards being psychologically ready to up the nights a bit to increase the optimal. For me Gold just ain’t gonna happen, but neither is “just adequate” ever.
Cheers
Hi Folks
Hey Rich
I too will more than likely never get to optimal, if by that you mean #'s that are dead on each and every time.I try hard to my best but being that I’m only human I did work very hard to get to nocturnal, In my area they are only two centers that offer home hemo, both 50 miles away.
Bob obrien
I would define optimal dialysis as having a high degree of bio-compatibility and most important to me deliver the most dialysis per minute/per unit of time.
For instance clearances increase with dialysate flow rates. My memory is that clearances increase 11% when dialysate flow is increased from 500 to 800 ml/minute. I want that 11%. I want a large, highly efficient artificial kidney. And I want it all to minimize to the extent possible the chronic inflammation response as the blood makes its way through the dialysis circuit.
Long time readers of this board may suspect I am reminiscing about the Aksys PHD and they’d be right.
Bill, it seems like you wnat the benefit of NHHD in the time one spends doing SDD. OK technology, you’ve got some catch up to do. Sounds like what you’re looking for are leakier filters and faster machines.
Mel and Bob, you’re both on the right track. Each of us has to make a decision to which modality is right for us. There’s no question that some are better than others, and I suppose everybody can go for Gold, but some may falter and only get Silver of Bronze. And most of the time it’s not due to faltering or one’s own fault, but one must weigh the other factors that affect their lifes. Bringing dialysis homew adds several additional comples layers to family life. There may be issues with other family members because now a part of the home becomes one’s personal treatment room. If any changes to plumbing is required that will affect other family members. If supplies need to be stored (like mine in the hallways outside our bedrooms) family static might arose. So it might not be a simple answer of “I want the optimal treatment available”. It must be weighed with everything else.
Hi All;
Adequate verses optimal dialysis… As a helper, My partner’s Quality of Life is the best it has been since the first few years when she was diagonised with ESRD… So does that mean that she is getting adequate or optimal dialysis??? For her and I Nocturnal dialysis while sleeping is the best it can get… You have to sleep so why not dialyze at the same time… NNHD (Nightly Nocturnal Hemo Dialyais) slow, gentle dialysis 6X/wk is best for us…It is adequate and optimal… Until there is a better procedure that will improve her quality of life we will continue down this path.
HemoHelper
HH, I applaud you and many other caregivers who allow their partners to “go for the Gold”. You will find that all of our spouses/mates/so’s sacrifice something to let the patient dialyze at home. But there also degrees to which some will sacrifice, or for the patient to ask for the sacrifice. I also know in-center patients who want to do HHD, but can’t or won’t because of their partner.
So here’s a shout out for all of the caregivers out there. We don’t take you for granted and appreciate everything you do, to whatever degree you do it. HHD, whether SDD or NHHD, has invariably improved the lives of us patients. By the definition of adequate vs. optimal, I may not be personally getting the optimal treatment vs. other people here. Does that mean I’m only getting adequate results? Perhaps! But my definition of adequate is higher on the sliding scale than those getting “adequate” dialysis in-center.
To all of you, as a caregiver, I do these sacrifices because I love my husband and do not want to let him go. So for me it is seffish! I know that doing Nocturnal home on Nxstage for 6 nights a week is giving him the most that I can do to keep him with me. The rest is up to God. I also know that because of his age and other health problems that we go through many bumps in the road. But that is OK too.
If it ment that doing dialysis 7 nights a week to get him to the Gold Standard I would do that too.
You all keep me going learning from you.
Pat
Rich;
I think that those that are having dialysis in Center is just there sustaining life and not getting better, but slowy having their quality of life taken away… So you really don’t get adequate dialysis in center… just life sustaining treatments… that is the way I felt and was the incentive for me to try to get better dialysis for my partner. I couldn’t see her continuing to have all those ups and downs with 3X/week treatments in center. She was full of life while on PD with very little food/liquid restrictions. Hemo in center was just awful…
Now the $64,000 question is “How can we get more patients/Neph to start with home dialysis programs?”… PD with the Baxter Home Choice or Hemo on the NxStage System One right now are the choices I would recogmend. My partner constantly tells friends that develope ESRD to try PD and now NHHD… as she is living proof that you can have kidney disease and still have a good quality of life.
HemoHelper
[QUOTE=Rich Berkowitz;14935]HH, I applaud you and many other caregivers who allow their partners to “go for the Gold”. You will find that all of our spouses/mates/so’s sacrifice something to let the patient dialyze at home. But there also degrees to which some will sacrifice, or for the patient to ask for the sacrifice. I also know in-center patients who want to do HHD, but can’t or won’t because of their partner.
So here’s a shout out for all of the caregivers out there. We don’t take you for granted and appreciate everything you do, to whatever degree you do it. HHD, whether SDD or NHHD, has invariably improved the lives of us patients. By the definition of adequate vs. optimal, I may not be personally getting the optimal treatment vs. other people here. Does that mean I’m only getting adequate results? Perhaps! But my definition of adequate is higher on the sliding scale than those getting “adequate” dialysis in-center.[/QUOTE]
Bill:
Can you feel the difference between the Aksys and the Nx Stage.
Erich
aka the riverdude
[QUOTE=Bill Peckham;14909]I would define optimal dialysis as having a high degree of bio-compatibility and most important to me deliver the most dialysis per minute/per unit of time.
For instance clearances increase with dialysate flow rates. My memory is that clearances increase 11% when dialysate flow is increased from 500 to 800 ml/minute. I want that 11%. I want a large, highly efficient artificial kidney. And I want it all to minimize to the extent possible the chronic inflammation response as the blood makes its way through the dialysis circuit.
Long time readers of this board may suspect I am reminiscing about the Aksys PHD and they’d be right.[/QUOTE]
I think that I loose my yardstick week to week so it is hard for me to compare and there is the whole tricks of memory that one remembers the good times more than the bad times. Putting aside the frustration/inconvenience with the Aksys’s downtime i.e. thinking about when it was humming along then yes.
I think in the 17 years I’ve been in dialysis I’ve never felt better than when I was using the Aksys PHD. I take a high natural hemoglobin as being an unambiguous sign of my receiving optimal dialysis and for long stretches (6 months, 8 months, etc) I had hemoglobins of 13 - 14.7 without EPO. I have not achieved that with the System One but I’m going to try nocturnal next month so perhaps that will give me a new yardstick.
[QUOTE=Bill Peckham;14996
I think in the 17 years I’ve been in dialysis I’ve never felt better than when I was using the Aksys PHD. I take a high natural hemoglobin as being an unambiguous sign of my receiving optimal dialysis and for long stretches (6 months, 8 months, etc) I had hemoglobins of 13 - 14.7 without EPO. I have not achieved that with the System One but I’m going to try nocturnal next month so perhaps that will give me a new yardstick.[/QUOTE]
Better in what ways? More energy, mainly, or something else?
Daily dialysis was less logistically impactful on my life, but more clinically impactful i.e. the PHD took less time out of my life and provided more dialysis. Again putting aside the issues it had early on with reliability and thinking of the periods when it hummed along.
I am referring to things such as energy, appetite, sleep, bone health etc.- any noticeable improvements here with AKSYS? Very interesting about the high natural hgb, but what else?
Bill
but I’m going to try nocturnal next month so perhaps that will give me a new yardstick.
I’ll be checking your postings to see what wil be your take on doing “nocturnal”
Richard C/O Jessie
Rich - We too wanted our mother to have the quality of life and the freedom. About five months ago, my brother and I came to see you to convince our mother to try Home Hemo as she was on PD for over 5 years. She is 4.9" and 46kg and was never able to handle the volume to have adquate dialysis.
We have convinced her to have the surgery and after the fistula surgery it required six weeks to recover, then we were at the hospital to create the buttonhole, took four weeks, and now we are at the clinic being trained and the nurses are estimating that it should take approximately 3 to 4 weeks or 3 months maximum.
Looking back, we realize she should have been on Hemo vs. PD because of her size. Already we can see the difference in the lab results. We see the benefits and now we want to move forward. But, we see a problem with the training period and the process.
The training seems overwhelming but, I would like to learn it and learn it correctly so that we can do it the right way at home. However, being a full time employee, and the only support partner for our mother, we asked if we can be trained at home after hours. Spending 4 hours in the morning at the clinic for additional 1 to 2 months, and having to already taken time off, I am afraid for my job security.
But, after looking into it, it sounds like the Medicare and Medicaid does not cover expenses for the technician to come out to train. Do you know anything on this nature at all? The ladies at the clinic have been tremendously supportive, but, it looks like to be trained at home, all cost would be out of pocket and was wondering if there were any options I may have missed.
Hi Helen,
Medicare does not restrict WHERE training can occur, but I’m not aware of any centers that do in-home training. Medicare DOES require a nurse–not a technician, though. And since nurses are in very short supply, and one-on-one training is very costly to do (some centers train folks in small groups), it’s probably not too likely that a nurse would be able to go to your mom’s home. It is worth asking what sort of flexibility might be possible in the training schedule, though. You are not the only folks to have work-time issues.
If your mom’s buttonholes are already done, and you are training for the NxStage machine, I sincerely doubt that training will take 3 months. I’ve never heard of anyone taking that long. Clearly, you want to be sure to train enough that you feel confident at home–and the training staff would never let your mom go home until that’s the case–but it still shouldn’t be that long. So, you may be more worried than you need to be…
Dori- I just feel like we’re stuck or literally I will have to look for another job in order to complete the training and get her situated. We’ve just began our training on the 11/19th and due to Thanksgiving day, we skipped Thursday, Saturday and Sunday, so my mother had 8 hours of treatment this week and today, she can’t even open her eyes from swelling. Even after speaking with the clinic to do a treatment on Saturday, was not an option. The nurse just went over more strict diet and fluid restrictions.
I can’t say for sure I will feel comfortable in inserting the needles to my mother in 2 weeks as I am naturally not good with needles. So to be realistic, I want to give myself at least a full month once I begin witht he inserting of the needles. At the end of the day, having a technician coming out to the house to do treatment until I am comfortable and paying out of pocket would be better than losing my job.
The nurses at the clinic said that the Medicare would not cover having the nurses to come out to train. I will look further into this.
Regardless, I know this is better option for my mother as we won’t have to go through what we are going through this week, cutting down her treatment hours because the clinic is closed.
Helen,
Perhaps your clinic can work with the nurse that trains you to work different hours to accomadate you.
When we were training the nurse came in at 7:00 so I could go to clinic with my hubby and insert needles,
while I was learning. I would leave and and they would work with him.
When we had to train on the machine she again worked early so I could take less time off work.
That really worked well for us. We trained from 7-10. I work from 8-4 so I only had to use 2.5 hrs for one week. ( we were already trained on the nocturnal Fresceius). We do nocturnal on the Nxstage 6 nights a week. It is great.
Your mom’s RX will be different. Our training people usely train new Nxstagers in 3 to 4 weeks.
Good luck.
It truly is worth the time spent to learn.
Pat