I have read about these programs and asked my doctor about using them to improve my tx. I was surprised to here him say that he didn't think they were useful at all. He said they just change around how the fluid is pulled off and don't make any significant improvement to the tx. Do you think he really believes this or is callous to the way patients feel?

Also, I told him that dialysis shouldn't have to hurt. But he seems to think, yes, dialysis does need to hurt if thats what it takes to get the fluid off. I am not a fluid overloader, but dialysis hurts when the perimiters for my tx are not set correctly or available methodology is not used.

I also had a crazy nephrologist that stated he was from the "old school and that you have not had a good dialysis treatment until you cramped". Needless to say, I left him and his "old school" ways. And now I go to a nephrologist that will let me use UF profiling where most of the fluid is pulled at beginning and tapering down.

You most definitely do NOT have to hurt to have a good treatment.

#1-you are to be commended for not being a fluid abuser. that is NOT an easy task to acheive. Keep up the good work.

#2-when do you cramp the most? Is it towards the end of the treatment primarily? If so, then UF profiling is exactly what you need. Our physicians allow us as dialysis providers to have freedom in administering the UF profile to suit the patients needs. Sometimes it helps, sometimes it doesn't. It definitely does not hurt to try...

#3-the sodium profile is OK, but has a cost associated with it: you WILL be thirsty after treatment for about 4 hours or so. You can do your own sodium profiling by bringing a salty snack. Some of our patients even bring little packets of salt from the restaurants just in case they have a rough treatment.

#4-I would consider a new nephrologist if he/she pushes the philosophy that it is OK to be miserable on dialysis. That used to be the case, but not anymore. The quality of the equipment and the empowerment of knowledge have led (most of) us to a place where the only question now is "How well will you live on dialysis?" It is possible to live a nice relatively pain free life while on HD.

#5- you will always have an occasional bad treatment. I would never want to place the expectation out there that any patient should be able to have an ideal treatment every time. Sometimes, due to variables unknown, you will cramp, get nauseated, etc.

#6- ask yourself honestly: is the MD and staff working with you or not? If not, shop around and find some that will. Do NOT ever let them put you in a place you don't feel you should be. If you don't have some kind of a peace inside you that their service and advice is sound, then it is probably not sound. It is also possible that you need to consider any biases you have, unforgiveness, anger, and such that might taint your emotional status towards your caregivers and physician.

Wish you the best. Hang in there!

Kraftsims,
I really appreciate that a professional from another unit has stopped to help answer my questions.
My doctor and staff are decently good to me, but I find there is a serious lack of knowledge on their part when it comes to the tx.

I never cramp anymore, because I have learned how to gauge my dw and set a target weight. I do my own math always and double check everything on the tx. But around the last hour and a half, I begin to feel mentally diminished and then I start to feel physically bad. I feel pressure on my chest, weak and strained as my bps drop lower and lower (my doctor says I have text book bps) into the 90's, and I am concerned for my access. I have no appetite when I get off tx, because I feel sick (feel like I've been run over by a truck).

I go to sleep for the night (I get home at 9:30 pm) and I feel dried out and sore in my body. Sometimes I wake up around 4 a.m. as if it was 7 a.m. I'll get up and do something for awile and then I tire again and go back to sleep. When I wake up again, I continue to feel unwell until I eat breakfast. After breakfast, I finally feel back to normal.

For me, being on dialysis is like a Dr Jeckly/Mr. Hyde effect, because I feel ok up until dialysis, but by the time I reach the last hour or so of tx, begin to feel sick again lasting until the next morning. The on/off wellness of being I experience from dialysis, is very scary, because I feel so bad when I'm on the down side that I almost feel like giving up. But then the next day, I can't remember why I felt like giving up the day before.

My doctors and staff can not know what this is like, yet they seem to think its just normal for a dialysis patient. I consider myself a very strong person, but I could easily succomb to the voice of despair when I'm on the downside. It is extremely difficult to go into dialysis feeling good except for fluid that must come off, knowing that in a matter of hours I'm going to feel horrible again, and my staff thinks its just normal for a dialysis patient.

Yes, I'd like to have a staff that is educated, but finding another unit is easier said than done. The one redeeming value of my staff is that they will work with me, but its like I must be my own doctor, nurse and tech and direct them what to do.
Sodium modeling would not be worth it to me if it makes me thristy up until 4 hours after tx. I had this happen to me once when the sodium was set incorrectly and I thought I was going to die, it was so unbearable. I've been reading that there are other techniqes that produce efficient txs with excellant patient well being, but the techniques I read about (i.e backflushing, dialysate filters, eating while on tx. in place of expensive EPO meds etc.) are never used in my unit and never mentioned on the boards.

It has been alluded to of late that only long dialysis can improve patients' txs. I hope there are ways of customizing and improving the tx., because the way I get dialysis is no way to live.

Have you used these words with your staff and nephrologist? Your social worker? As an RN, I get concerned when I hear words like "I could easily succomb to the voice of despair when I'm on the downside. It is extremely difficult to go into dialysis feeling good except for fluid that must come off, knowing that in a matter of hours I'm going to feel horrible again."

Statements like these, to me, are flags that you aren't getting the correct prescription. Have you spoken to your social worker to explain the depth of pain after treatment? To your charge nurse? Have you mentioned that it is almost not bearable?

If you express your condition that clearly and no one listens, I would be concerned with the staff and physician.

Let me bring some balance...I've observed and concluded that no one will ever have a treatment where they don't feel a bit drained and tired afterwards. I've spoken with enough patients to believe that it might not be possible to have many treatments where you can walk out of the unit and feel like you have energy to do many things. It could be possible you are receiving the best we (mankind) have to offer. It might be one of those weigh out the positives and negatives and see if you consider the positive of a continued life worth it.

You made the statement "It is extremely difficult to go into dialysis feeling good except for fluid that must come off, knowing that in a matter of hours I'm going to feel horrible again...." Since I've become a dialysis educator 2+ years ago, I've begun to marvel at the complexity of the kidneys and what all they accomplish. Rest assured, you are having much more accomplished than just "fluid that must come off." I realize the fluid is the most visible and tangible portion of your lifestyle and treatment. I believe the fluid to be the tip of the iceberg. Under the surface, where you can't reallys sense or feel, you have tremendous amounts of toxins and electrolytes that become imbalanced. We do not, at this stage of the game, have the ability to correct these to normal levels. What we do, is to bring them down to levels of survival, but not optimal levels. My point being: in America, we have fast and furious dialysis (maximize the surface area, speed up the flows, enhance the concentration gradients) because Americans, generally speaking, don't like to stand in line, take turns, share resources, etc. I'm one of them. I speak out of my own world when I say this. Now, when you look at our culture, and we have the ability to rapidly get you back to nominally livable levels of toxins and electrolytes, that is exactly what we do. It makes your body hurt. You will almost always (I believe) have some kind of physical manifestation due to the rapid chemical rebalancing that occurs. It simply is hard on the body.

I've read of a few places around the globe that perform 6-8 hour treatments 3-5 times per week. The result is much easier on the body, less illness, prolonged life, etc. I'm not necessarily slamming American dialysis, just commenting that we want so much in such a short period of time that it will literally 'drain' your body and take time to recharge.

Have you considered peritoneal dialysis, nocturnal dialysis, transplant?

Merry Christmas and hang in there. You can do it. We are cheering for you. It IS worth it. It's got to be worth it or you wouldn't have stuck with it this long. You are a survivor. Don't forget that!

TO JANE: a lot of the symptoms that you complain of sound like the ones I had from re-use. Are you on re-use. Also, I've found that even meaming well, techs tend to take too much fluid off. Only the patient knows what %tage is food and what is fluid. You BP should remain fairly consistent. If not, something is wrong.

Kraftsims,
Please forgive me for not getting back to your post sooner. Somehow, I completely forgot to come back to this particular board.

I have been in two units now and both of them are essentially jiffy lubes. The training just is not there. The doctors and the staffs of both units have had very sabotaging attitudes as I guess they are in denial due to the fact that their lack of responsibility to be adequately educated and trained puts patients lives in jeapordy. I have no doubt that this is the problem and would transfer immediately if there was a competent unit near me.

The thing is, I have long since stopped depending on the staff to give me my txs. Yes, they physically carry out the tx, but I have educated myself so that I can protect myself at all times. I am just at a point where I need either UF Modeling or Sodium Profiling etc., and I'm stuck at present as I'm not going to be a guinea pig for these procedures when my staff doesn't know how to perform them safely. And until I can get better directions on how to select the program that is correct for me, I don't feel to proceed with it.

Despite my staff's lack of training, they are very good people and would assist me if I figured out how to run the programs. Thats the shame of it - they should be skilled and would be tremendous workers if adequately trained. I can never count on them so I can move ahead - I have to get my own info each time I need to take a new step, and that can take excessive time resulting in a lot of hurtful dialysis.

Regarding your opinion that short dialysis has to be tiring to some extent and not without problems, I think that's what most staff believe, and I was starting to believe it, too, until I read the posts of a person who said its not the short dialysis that's the problem, but the lack of technical expertise! This person's child started off on in-center dialysis for two years and was experiencing terrible txs like most in-center patients do. He was able to get her into home hemo, found a machine that worked well with her (this is key as not all machines are the same), and through much trial and error learned how to develop an efficient, 3xweek tx of 4 1/2 hrs. with no symptoms or fatigue. She's had trouble free txs for 15 years and is in excellant health!

So, I sense I could be helped simply by adding Uf or Sodium programs to my tx and really believe that short dialysis txs can be made efficient and trouble free if the correct techincal expertise is used. For a tx to be good there should be no fatigue prior, during or post tx. To say otherwise is simply untrue.

My earlier post was to say that even a strong patient can despair very easily when dialysis is poor. Don't worry I won't quit, because I will not give up my attempt to get to an efficient tx. But most patients are not so strong and are going down the tubes everyday.

Anyway, thank you so much for your concern and encouragement and I hope you understand what my journey has been like. We need more nurse educators and together we need to get the facts to deliver efficient dialysis.

Jane, Training nurses with the company who make the machine you are on, will be happy to come in an train the staff regarding UF and Sodium profiling. This training is provided at no cost.
You could be there as the patient.

Honey,
I would LOVE it if you would come and train my staff in these procedures! But I feel I am in a Catch 22, because to suggest to my staff that I have located a nurse trainer who will travel to the unit and train them, would be taken as a big insult to them. I think in their mind they think they don't need anymore training..they think they ARE trained! This attitude is so engrained, that when I as a patient have to repectfully correct them or say I want something other than what they are doing (because I know they are making an uninformed choice), they think I'm an obcessing patient.
Almost every other patient is asleep unconcious unable to face their life on dialysis, and here I am, alert, and working so hard everyday to understand my txs, and they think I'm the crackpot. Now, deep down inside they do know I'm not a flake, because there have been times that some of them have acknowledged my growing knowledge or even complimented me for being an involved patient. But most of the time, they turn their noses up at me as I get in the way of their resistance to make correct choices for tx.

So, the question is, how do I have you come to train them if they already think they know it all and don't want anymore work? You know what I wish? I wish you nurse trainers had a course specifically for patients! I would of gotten into home hemo long ago if I could have, because it is impossible dealing with a staff that is so flighty and sabotaging, but nothing is offered in my area. I am serious.. if there was a course in how to run the tx, for patients, (like there is for home hemo patients), I would be the first to sign up, because I'm tired of dealing with a staff that undermines every tx.

For m. micone,

I am not on reuse. I got off that as soon as I saw what the risks were. I always had uncomfortable txs with it and a low grade fever post tx. No, solved that one and also do not cramp at all as I learned to gauge my dw and set my own goal.

Jane it is so nice to have you being involved in your tx. In our unit we incourage pt involvment; i.e. self cannulation, calculation of dw, and trying ways to make their tx better. We have the ultimate say but try to be flexilbe. From what your saying it sounds as if you do need sodium modeling. We have found that a slight increase in dry weight, 0.5kg may be needed to sustain bp.Try this, perhaps leaving on this additional wt maybe what you need.
Be encouraged.

Bahama,
It is interesting to read that your unit encourages patient self-care. I would love to be trained in self- care. I'd particiulary like to learn the buttonhole technique of sticking in order to prolong my access and wish I had someone to instruct me.

When you say to add .5 to my dw do you mean with sodium modeling or without?