Wondering which dialysis schedule would be a better option?

[graftgurl]

Hi everyone 

I just started in-center hemodialysis on Aug. 21st. It has been alright although I have been having problems with my graft and swelling in my legs, but that's another story.
What I'd like to know is how the people who do daily dialysis feel about it? Between the last 3-4 treatments I have gained more fluid weight than I did before and more than they really like. I have also been more out of breath and more tired. The fluid is more visible around my waist and in my legs (more than just the circulation problems with the graft). I don't know why this is happening because nothing has changed - my diet is the same, my fluid intake is the same, my meds are the same, etc. My lab work 3 weeks ago was perfect except for my protein level which was still very low. It is frustrating to no end. Why is this happening?     It is getting me down and I don't like it!! Does anyone have any ideas?

I was nauseated all of the time before I started dialysis and I hardly ever ate before 11 AM. Since I started dialysis my appetite has returned somewhat. I have begun eating breakfast when I first arrive at the dialysis center. I don't know if my dry weight changed because I am actually gaining weight or if all the gain is fluid. I honestly think it is fluid. And the last 3-4 treatments I have been pretty nauseated again. So much so that I have had to take medicine thru the venous line so I don't hurl everytime.    I take the same medicine at home on the days I'm not in treatment.

Maybe my body is just adapting to being on dialysis and now it is already requiring more fluid to be taken off? Help!!!

So, my question is this:  do you think daily dialysis would be a better option for me? What does it entail? Does it have to be done in-center or is it easier to do it at home? I am just thinking that if I remove the excess fluid on a daily basis then I wouldn't be so out of breath and my clothes would fit each day when I put them on (!). It is very disheartening to get dressed on off-days only to find your pants/shorts won't button like they did yesterday after dialysis. It is also ridiculous to me to be huffing and puffing after only walking to the car from my front door! The grocery store on those days is a joy   

If anyone else has been thru this, I would love to have your input. This is so unlike me. This problem is really getting me down. Not only do I look fat, but I feel fat. And yes, I truly do know I am NOT but when I gain 8 or 9 lbs. every two days, it makes me feel like the StayPuff Marshmallow Man. The whole thing is depressing. I was feeling so much better after beginning dialysis and I was getting my appetite and my memory back. Now I want it to stay back.   

[monrein]

What's your salt intake like?  Salt will hold fluid in your tissues and make it hard to take off.  More D is always better for controlling all aspects of the body so I'd advise more often if you can manage it.  Difficulty breathing isn't a good sign, usually indicates too much fluid.

[kennebecriver]

Hello "GraftGurl",

I've only been on hemodialysis since the end of September and I'm happy to say, it's going very well. (I guess I'm lucky!) I guess my only question to use is "what kind of diet are you on?" They put me on a low sodium, low potassium, low phosphorus, and high protein diet. I'm also limited to 1.5 liters of fluids a day. It's a hard diet to stick to, but I've had excellent results by doing so. I gain very little between sessions (I go 3 times a week for 4 hours) and they end up taking what I gain plus a little more everytime. I think you should talk with your dietitian and see what he/she thinks. Also, as far as home dialysis goes, from what I've heard, it's much better for you. That's because you get the toxins out of your body on a daily basis. I'm looking into this myself...as soon as I can, I'm going for it! I hope things work out for you...take care.

[graftgurl]

I guess I should have said from the start:  I'm on a low sodium, low potassium, low phosphorus, high protein diabetic/renal diet. Whew!!  I have done pretty well on it and only cheat occasionally and in very small amounts. My weight and my labs have been normal until the last 3-4 treatments. Nothing, including my diet has changed and that is why I am so frustrated. Some of the symptoms I had pre-dialysis, like the shortness of breath, insomnia, fluid retention, and nausea that had gotten better since I started treatment, have now returned. They will draw monthly labs again next week, but until then I would like to know why it has all changed so dramatically seemingly overnight. I am not a depressive type person, but I have also become very emotional since this has started. Is it from lack of sleep and feeling worse, lack of control, or is it a sign of something else? I welcome any input or comments anyone has to at least give me some ideas that I can further research. Thanks you guys    I can always find strength and support here. You guys are awesome!!   

[monrein]

It does sound horribly frustrating graftgurl and I don't know what else to suggest to you but I sure do understand feeling emotional and upset about the lack of control.   So, I'm left wondering about the amount of dialysis.  Does your unit reuse kidneys?  Do you know your kt/v?  Please keep bugging your nurses and neph to work with you to figure out what's going on and keep us in the loop.   

[willieandwinnie]

graftgurl, I'm sorry your having so much trouble. Have you lost weight? Are they doing a profile on the machine? Have they tried to challenge your weight? Are they giving you back too much fluid? Is your end weight what was targeted? I have to totally agree with monrein, bug the nurses and the doctors to find out what is causing this. Keep us posted. 

[graftgurl]

Monrein,    for letting me into your reasoning. They do not reuse kidneys - I asked about that from the very start. Also, I don't have a clue what my kt/v is, but you can bet I will ask tomorrow!! I have been on the techs and nurses since all of this began 1 1 /2 weeks ago. Most of them look at me like they are clueless. I'm not trying to demean anyone (hey, I can't figure it out either) but I hate not knowing the cause and absolutely not having any control over it. I think I will talk to the nurse manager tomorrow to see if she has any insight or suggestions. If not, the doctor makes his rounds sometime next week and I will approach him for an answer. If the weight gain continues tomorrow, I will ask them to contact the dr. because I don't want to spend the next 3 days being short of breath, tired, bloated, and cranky    I don't think my daughter will be able to put up with me in that frame of mind and frankly, lately I have not been able to put up with myself  

willieandwinnie, I don't think I have lost weight, in fact I probably have gained a little since my appetite had improved somewhat after beginning dialysis, although the last 3-4 treatments that isn't true. They changed the profile on the machine 3 weeks ago that helped with the cramping I was having toward the end of treatment. I have only had one problem with it since then. I think they are also adding in a small amount of saline at the end to prevent the cramping. Surely that small amount is not adding liters of extra weight? I guess I'm not exactly sure what challenging my weight means so I don't really know how to answer that question. My end weight was great (losing 3-4 Kgs) until this problem started. The 2nd time I had gained so much weight, they tried to pull off extra that day, but when it came time to weigh in I had lost the least amount I had ever lost since the beginning. Now you can see why I'm frustrated. I appreciate all the questions, though. It helps me to focus on the possible problems and prompts me to ask more questions tomorrow.

I'll let you know what tomorrow brings.

[kidney4traci]

Hi graftgurl - sounds like you have had the same advise from others that I would say, so I probably do not have a lot to offer.  If you were cramping at the end of sessions three weeks ago, that seems to me they were pulling too much off.  If you have to pull 3-4 kilos each time, that can be hard on your body.  Home hemo is more of a gentler process, since it is done more often you generally feel better and also pull less.   Your diet is regulated more, and you have a bit more freedom.  Your kt/v is important to be sure your clearance is enough.  How many hours are you on at the clinic?  Maybe you need more right now.  Do you still pee?  That matters too.   The nausea is usually from the build up of the toxins and that is why I though you needed more treatment time.  Your main monthly lab should tell you that.  Once you get this maintained, you should start to feel better.  Consider home hemo - I love it so much more than being in center!!!

[graftgurl]

It's late and I can't stay on too long,  but I wanted to give an update on what happened when I went to D today.

When I arrived, I weighed myself as usual. I had gained back a little over 3 Kgs. That isn't too good for only 2 days. I spoke with the nurse manager (she just happened to be my nurse today) and we talked about the issue at length. I assured her that my diet, my meds, and the settings on the machine had not changed since I started having this problem. She said she doubted my true weight had changed that significantly. The only other thing we thought might be different is that my urine output has continued to fall since I began D. Before I started, I was peeing around 1200cc/d. I think it was so much because I was on a moderate dose of a diuretic (Lasix). My urine output dropped dramatically by the 3rd treatment and of course, the doctor had me stop the Lasix. Now I am not peeing much at all.

She also spoke with me about fluid intake. I have not changed the amount I drink (I'm pretty sure). She said that with the amount of fluid they have been pulling and then the added saline at the end, I was probably more thirsty and possibly drinking more than I realized. I am very good about measuring out how much I should drink each day and making it stretch all day. However, I was thinking about when I took most of my meds at night. I have so many to take that I can't get them all down with just a little amount of fluid. I had not added the extra fluid from that situation into my accounting of what I had been drinking. After some discussion she also felt that the extra saline at the end of my treatment may indeed be playing a factor in the weight gain. So we decided to turn it off today and see what happened. We also decided to pull off a larger amount since I had 3 days until D again.

Well, I lost the most I have ever lost after one session. I lost 5 Kgs!!     I did experience a little cramping at the end, but it wasn't too bad. It was more like just being on the verge of cramping and it was mainly in my hands this time. The tech showed me some sympathy and actually put pressure on my needle sites instead of having me do it. Awwwwww.......
When I got home and looked in the mirror I was ecstatic. The person looking back at me was the old "me."  "Hi me!!"   I didn't have the gut/inner tube around the middle and my legs were not as swollen either. My daughter even commented on how thin I looked again. I hope that stopping the saline at the end will continue to work and that the cramping does not get any worse. It might be better during the week to pull a little less fluid off since D is every other day. I sincerely hope this is the solution.

Monrein - the kt/v was set at 1.4. In what little I have researched about the kt/v on the internet and from what the nurse told me today, this setting is right on target. My labs show it to be adequately removing toxins. Is there something else I should know about it?

Kidney4traci - thanks for the input.    That home hemo is a gentler process is the reason I was considering that option. I am at 3.5hrs T/T/S. I should also mention that they ran me for 3.75hrs today. I realize the nausea can be due to the build up of toxins and I think that is why it was so much better when I started D. I also have had trouble with slow digestion for several years due to nerve damage from the diabetes (37 years, type 1). I go thru spells with it sometimes and so the increased nausea may in fact be due to that problem and not D. I really think home hemo would be a better option for me, but I don't have anyone that could partner for me.  I know that you don't really have a partner, but how did you get through the training for home hemo without someone acting as your partner? I have nursing background so doing the actual treatment would not be a problem for me. However, my blood pressure at the center has been bottoming out during treatment and I don't think they will look on that kindly if I don't have a partner. Honestly though, if home hemo is longer and more gentle, I truly doubt my blood pressure would be a problem. Do you think so?

OK, I have to go to bed or I'm going to fall asleep in church tomorrow. Yeah!!!!     We get to turn our clocks back 1 hour tonite. I get a whole extra hour of sleep - I definitely need it!!

[pelagia]

  happy to hear that it went well yesterday!

[kidney4traci]

Glad to hear you had a better experience yesterday, and hope that goes well until Tue.  I went through training telling them that he would not come in to training, that he (my husband) had to work and that I would be the one to stick myself an do the treatments.  They just never said anything else.  Don't be fooled on the time though, I was 3 1/2 hours in center and down to 3 hours, 3x/wk -  then went on home and now I do 2 hours 20 min 5x/week and with set up time it is more time you spend on dialysis.  But, again I would not want to go back. 

Bottoming out to me means you have pulled off too much fluid.  When you start to feel any light headedness or cramping, you need to be aware to stop the pull or add fluid, especially important if you are alone.  I have an older daughter that helps too, at least she is around if I need.  I do everything myself though without problems.

[monrein]

graftgurl, here is a link that talks about Kt/V, and basically, what they consider adequate is in fact barely so, and is far from optimal.  It comes down to cost and that's why short daily or nocturnal are better choices in terms of how we feel.