Are you about to start dialysis? Ask any questions come here and get the truth.

[willowtreewren]

My advice: Listen to the vascular surgeon. HE is the one who knows about fistulas.

[Malibu]

You guys are a hoot.

My husband (MM) is starting hemo dialysis Monday.
 
Here are my questions:

1.  To whomever has trained through Davita on home hemo:  Does it really take 4 whole weeks of 6 hours days to train?

2.  I had 2 other questions but forgot them during the registration process!  :O) I'll post when I remember them.

[Malibu]

I remembered!  ......laugh......

2.  Those of you on short daily home hemo:  when you first trained how long did they do your training hemo?  How did you feel after the first time? 

3.  Those on short daily home hemo:  Many have said they are wiped out after the 4 hr in center hemo.....is the short daily home better for you?  Do you feel better?  Are you wiped out after a treatment like the 4 hr people say they are?

4.  Eating while on the machine:  the training nurse said I can bring a 'snack only' for MM to eat while on the machine (there at the center during training), we will be there through lunch.  There is a reason people call us power grazers....we are not plump but we do like to eat and eat a full meal.  Why would the nurse say he can only have a snack at the lunch hour?

Thank you 

[jbeany]

1.  To whomever has trained through Davita on home hemo:  Does it really take 4 whole weeks of 6 hours days to train?

Training times vary from center to center.  I did 2 weeks of training to take home a NxStage, but I was thru a private center, and they sent me home when I was ready.  Other patients there have trained longer, just because they weren't comfortable alone after 2 weeks.

2.  Those of you on short daily home hemo:  when you first trained how long did they do your training hemo?  How did you feel after the first time? 

3.  Those on short daily home hemo:  Many have said they are wiped out after the 4 hr in center hemo.....is the short daily home better for you?  Do you feel better?  Are you wiped out after a treatment like the 4 hr people say they are?

4.  Eating while on the machine:  the training nurse said I can bring a 'snack only' for MM to eat while on the machine (there at the center during training), we will be there through lunch.  There is a reason people call us power grazers....we are not plump but we do like to eat and eat a full meal.  Why would the nurse say he can only have a snack at the lunch hour?

Thank you 

The Nxstage time varies depending on how much fluid you are pulling off.  The prescription isn't written for time, but rather for amounts of fluid to be processed.  I don't know what the time would be for a standard hemo machine.

I felt better from the first run, and never got the washed out feeling at all on home hemo.

They worry about choking and nausea if you over eat while hooked to the machine.  I'd just bring lots of little snacky things that will add up to a lunch, instead of a big heavy meal.

[Malibu]

Thanks so much for the info.  We will be on the Nxstage machine.  Okie Dokie about the little snackie things, will do.  I guess I'll hovel in the other room eating my full meal. 

[JennyGiggle]

Paul:  I agree about this site.  Actually l've learned more on here than from the doctor and the dialysis class combined.

I completely agree. Its as quick as they can get me out the door. I know the docs are busy, but until I found this forum, i felt really in the dark, things are starting to make more sense now!

[Choosin2bHappy]

my brother is in the process of seeing the surgeon for his fistula..he is having terrible night sweats right now and has been on dialysis since he went into the hospital for walking pneumonia on January 15th..it shut down his kidneys, he had congestive heart failure and also blood poisoning from the buildup of toxins..he was in critical care for weeks. The doctors didn't say much and we have no idea what to expect.  he was told he would feel better in a few weeks but after he got home from rehab, which was about a 5 week point for dialysis, he still isn't feeling the promised million bucks.  Big surprise.  Any help, especially from another person in his situation(wheelchair) would be great..he has had a few complications from a paralysis standpoint.  I get so mad since the doctors who don't specialize in this field are very insensitive to his needs.  Thanks for any input..it's MUCH appreciated!!!

[SkyDancer]

 Sorry to hear about your brother's troubles.My mom was in a similar situation when she started dialysis.She uses a wheelchair ( can walk with limited mobility ).She suffered through night sweats,no appetite, and was constantly tired.( At the time she was in a nursing home for rehab) she was the only patient that we knew of that was running their air conditioner in Oct. and Nov.

It may take a while before he starts to feel good ( I don't know about the million bucks part ).Sometimes it depends on the patients clearance rate on dialysis and what their labs show.It takes a lot of patience on our parts when our family members are suffering.I hope things start looking up for you and your family soon.Take care

[graham]

Hello,

My mum who is 90 has recently been told that she has a reading of 14% kidney function. This was due to a possible overdose of Candasartan (16mg per day) which was prescribed for high blood pressure, a problem she has had for years. She was well up until December 2009 when she was taken to hospital for tests following a blood test that showed function had dropped to 15%. She was told then that dialysis was a probability. We are to attend a session with a specialist to talk about her condition and treatment on April 29th. She is also due to have an MRI scan shortly.

I have a few questions which I hope someone can help me with?

She has been given a choice of PD at home or HD at Ilkeston hospital, Derbys, near where she lives.  I have read some articles and literature on this and it all seems quite scary, especially given her age.
It has all been quite a shock to her as she had not realised that this would be a lifetime thing and she has up until now had fairly good health. She lives on her own and her initial reaction was to opt for PD at home, but I wonder how practical this may be? Is nursing care available throughout the day on the NHS or would she be expected to do all the procedure herself?

My opinion on this is that to start with at least it may be better to elect for HD at hospital, but I have heard that nocturnal sessions are better if possible. Does anyone have any knowledge regarding this at Ilkeston. I know that there are restrictions on diet, but I have not been able to find anywhere that discusses in detail what the limitations are or what happens if they are not followed?

I have also read that her life expectancy could be as little as a few months up to probably at most a couple of years? Can anyone confirm this? Do I tell her?

Finally, what is the prognosis if she elected not to have any dialysis in terms of life expectancy and what would her quality of life be compared with dialysis which I understand can leave people 'washed out', especially given her age.

She continues to have treatment for stubborn high blood pressure and is being monitored. In addition she is prone to a persistent UTI and is given low dose antibiotics for this, however I have also read that certain antibiotics can also adversely affect renal function?

Sorry for so many questions but this is all very new to me.

Regards
Graham

[billybags]

graham, Sorry to hear about your mum, I live in Bulwell so not to far from you. What can I say, if your mother goes on to do dialysis she will have two choices CAPD or Hemo, she will have to have a catheter inserted in to her peritoneal (tummy )or a line or fistula in her arm for Hemo. If she does PD she will have to do it 4 times a day 7 days a week. This is a gentler way of dialysis but can be time consuming especially if you are old and you would need to have room for all the fluids and paraphernalia that comes with it. Do you think she would be able to cope with this, I would not think so. Hemo is done normally 3 times a week and I believe you have a good dialysis unit where you are. You are picked up by hospital transport and taken to the unit and back.This is also time consuming, waiting a round for transport etc. but the onus is taken away from you doing any thing. You are mostly tired when you come off  Hemo. Diet is a main consideration, you have to watch what you eat and drink but the dietitian gives you good guidance about what to eat and drink. All in all it is a big thing for your mother but there is also a social side to it when my husband was on hemo at the city hospital there were lots of elderly people there. I notice you say her blood pressure is up it is probably because of the toxins in her body, dialysis will bring this down when it starts to clean them out. Hope this has been helpful.

[RichardMEL]

Graham - everyone is different and everyone's experiences will vary based on their root condition, anything else they suffer, and any other number of things. We have a lady in our unit right now - I am not certain of her age, but I reckon it is 85+ (you just don't ask a lady her age!!  ) and she is absolutely feisty! Already planning to visit her son in Moscow next year and do dialysis there. She had a bit of a rough start, but is settling down well and as I said is not going to let D slow her down! Some of it can even come down to attitude.

Given your mother's age I am sure the best would probably be to do hemo in center at least at first while she stabalises and they can monitor her etc. The choice between home PD, home hemo, in centre etc is really going to come down to what the docs think she can handle, and what she wants also.

As for how you feel - again it varies... washed out I guess yes is very common. Tired.. but other times quite a bit of energy(at least for me). More dialysis (eg: nocturnal) is better in general for everyone, but it may not be for your mother.

re diet - I guess there's not a lot of specifics because dietry restrictions can vary by person based on their specific situation. eg: some may be low in potassium and need more, while others may be high, so need less... and some may have a strict fluid restriction, and others not based on their output - it's definitely NOT a one size fits all situation. Generally though you need to watch foods high in potassium, phosphates and sometimes calcium. These are long lists so a dietician will go through that with your mother based on her labs and where she is at. It is reviewed on a regular basis (I just had mine this week ).

As for a choice to not do dialysis? Absolutely reasonable given your mother's age. She could last anywhere between 2 weeks and a few months - it's really hard to say because there are so many variables. Doing dialysis will keep her going of course. I guess it's her choice about HER quality of life at that point - not something we can really help decide.

I would say it's time for you, your mother, other family members to sit down with the neph and renal team and discuss all these issues.

[graham]

A big thank you to everyone for your help and support!

I think I know a lot of the medical stuff already after doing some research, but it always helps to talk it over with people who have been, or are there, so to speak.
It is more about how I break it to my mum really about what could happen. I don't want to give her false hope about it and at the same time I don't want to sound like a harbinger of doom. She thought at first that dialysis was a temporary thing and she would get better, so that is shock no.1. But as everyone's case and situation is different the statistics can be meaningless and therefore that is the way forward and to give her as best an outcome as is reasonable. She is in relatively good health and has a positive attitude, which I am sure can help. But, just a warning that time could be short. She is a sensible and practical soul who is very strong and would want to know the truth in order that she can put her things in order for peace of mind. I see her tomorrow and I was worried what I would say to her as everything seemed so negative, but now the path is clearer.

Thank you again for helping me with this. I am sure I will be in contact again.

Graham x

[graham]

I spoke to my mum today and she was quite accepting (though sad and disappointed and wary) of the situation after hearing her options, but had some questions I could not answer:

A couple of questions:

I understand that before hemodialysis an operation is needed to facilitate dialysis, usually involving the wrist and this happens 4-6 weeks before the start of dialysis?

Is there an equivalent operation, on the stomach, 4-6 weeks prior, for PD?

Lastly, my mum wants to know if she can bathe safely and comfortably with either of these options without danger of infection?

[monrein]

I've never done PD but someone will chime in on that I'm sure.  You could also do a site search for showering and peritoneal.

For hemo they create a fistula in the arm (as long as the veins are suitable...but if they aren't another possibility is a graft which is made of a synthetic material into which the needles are inserted).  Once it heals, showers are no problem.  If dialysis is required before the fistula has matured and is ready to use, they will put a catheter into the upper chest/neck area.  That is usually a temporary measure and showers are NOT recommended as the catheter goes right into the heart and infection could be serious indeed.  One potential issue for your Mum, because of her age, is the size and state of her veins and so a good vascular surgeon is important, as is vein mapping to see whether a fistula is a viable option.

[teniya]

my question is why do you people all hate dialysis? ive been on it since i was 15. I'm 18 now. I did hemo three years and just recently started PD. things are frustrating yes, but you could have it a lot worse. I went to the marysville davita in California for hemo and the greatest people worked there. they made it so easy. I wouldn't ever complain about it. I now am in PD and the nurses made the transition so easy. And even when i had unrelated trouble at home they made it easy as well. Dialysis keeps me, and all of you, alive. So why complain. It's saving your life. Good luck to you all, may you all get kidneys. But really there is NO reason to "hate" dialysis.

[Rerun]

Teniya, Please go introduce yourself and tell us your story (like the directions say).

Let's see.... you have not had to lose your job, make decisions about your young kids, get divorced due to your spouse not being able to handle the situation, lose you home because you can no longer PAY the mortgage and ride the bus because you can't drive anymore.

So, yeah, If I lived at home with mommy and daddy and had everything paid for I may not hate dialysis either.

Now go read the rules of this site and introduce yourself.  Then we may listen to you.     

[okarol]

I hate going to the dentist. Some people don't mind it as much as I do. Does that make me a negative person?  I am grateful that they save my teeth, but I will never LOVE dental work. Dialysis is not the same for every person and we need to be open to each other experiences. Even if you don't understand, perhaps you can accept that people respond to things in different ways.

[Stoday]

You wouldn't think it's so bad if you look at photos of patients on dialysis issued by companies. Grinning like idiots enjoying erotic stimulation...

[galvo]

You wouln't have been a model for these photos, would you, Stoday?

[Quickfeet]

Welcome Teniya, I'm glad D has gone well for you. This site wasn't created to hate on D. It was created to give people like us a place where we can say what we need to say and not be censored. Epoman, the one we all owe thanks for creating this site, explains it this way, "I started this site so dialysis patients can come and say what they really feel. "I hate dialysis, yeah it keeps me alive but I still despise it". I want people to be able to come here to vent and share their experiences. If you or someone you know are about to begin dialysis feel free to ask any questions. However be prepared, you will get the truth and sometimes the truth is hard."

See this thread - "Why I started this site, and what this site is all about. READ HERE FIRST."

I get my PD catheter tommorrow, and I hope my experience will be as good as yours.

[paris]

Teniya, take a few minutes and read through some threads. You will find this is a very positive and supportive site.  I think we would all trade in our bodies for healthy ones with no problems.  I hate kidney disease.  I hate that some people have cancer.  Doesn't make me negative.  I also hate that you have had to deal with all of this at such an early age.   Please go to the introduction section and tell us a little about yourself.  I look forward to more of your posts.

[RichardMEL]

Hey Teniya and welcome to IHD.

I never see the "hate" part of this site's name to be at all negative - even though it sounds that way. I'm so glad your experiences, so far, have been very positive - that's fantastic. Also perhaps you are one of the lucky ones and do not face many restrictions from dialsyis - eg: dietry, fluid etc which definitely is a pain in the arm to deal with. Maybe you even enjoyed some respite from school while having to do hemo (I imagine maybe I would have!!). As others have said this site is very supportive, yet honest about it. Some of us face different situations where it isn't plain sailing, or the disruptions to our lives, work, relationships because of this disease are very difficult to deal with at times. Yes, we are VERY lucky to have dialysis in its various forms as an option - unlike some others with organ failure, but that doesn't mean we need to think life is dandy with it. Yep, keeps us alive, but you need quality of life as well as quantity. Most of the time I feel the quality, but there are times when it's lacking. Each to their own. I still hope you will be part of our community and contribute!

RichardMEL, Moderator

[teniya]

well the fact that a person replied saying i had to live with mommy and daddy and had everything paid for. seems to me like this is a negative place. i wasnt insulting ANYONE. i simply asked and stated my opinion.

[Rerun]

well the fact that a person replied saying i had to live with mommy and daddy and had everything paid for. seems to me like this is a negative place. i wasnt insulting ANYONE. i simply asked and stated my opinion.

I am negative so don't let that offend you.  Go to "introduction" (like everyone else) and tell us about yourself and then I won't jump to conclusions.

             

[MooseMom]

It's not all wine and roses around here.  IHD can be a minefield if you let it because there are so many different sorts of people here who have many different kinds of experiences tainted by the spectre of illness and fear.  A lot of us are older and have lost so much because of kidney disease and/or dialysis, and many of us don't always feel grateful.  We don't judge people's emotions or reactions.  They are what they are, and we accept them on that basis.  Many people have good reasons to hate dialysis, and honestly, it is not your place to tell them that they are wrong.

This is not a negative place.  Far from it.  There are negative posts from people who are going through tough patches; this much is certainly true. Lordy, I complain with the best of 'em!  The rest of us come along and offer support, understanding and information.  I don't know what could be more positive than that.