How do most people start on dialysis?

Discussions for Patients, Family, and Friends HD For Patients
1

Hi Folks

I try to search for this but could not find what I needed.

How do most people go into dialysis?

For me it was a case that I got very sick , from having to self cath. I got a infection that spead to my kidneys. I was not aware of being put on dialysis till 3 days later when I woke up in a hospital bed in pain. Only to be told by a nurse what had happened. Then dumped into center, no options, no nothing, just told to go to center at this place and this time. And my doctor of 4 years was and still is a member of the group of renal doctor that run the centers in my area. The doctor that made the call to put on dialysis knows my doctor very well. And they were in disagreement over my tx, but the head doctor over rode my doctor. This whole thing has been a mess…

Bill, I’m working on things here about seeing what might or could be done to make a change. But you know as well as most people do that change to the system is hard and slow. And sometimes a person may need to look outside of the try and true route.
bobeleanor

2

[quote=bobeleanor;11562]Hi Folks

I try to search for this but could not find what I needed.

How do most people go into dialysis?

For me it was a case that I got very sick , from having to self cath. I got a infection that spead to my kidneys. I was not aware of being put on dialysis till 3 days later when I woke up in a hospital bed in pain. Only to be told by a nurse what had happened. Then dumped into center, no options, no nothing, just told to go to center at this place and this time. And my doctor of 4 years was and still is a member of the group of renal doctor that run the centers in my area. The doctor that made the call to put on dialysis knows my doctor very well. And they were in disagreement over my tx, but the head doctor over rode my doctor. This whole thing has been a mess…

Bill, I’m working on things here about seeing what might or could be done to make a change. But you know as well as most people do that change to the system is hard and slow. And sometimes a person may need to look outside of the try and true route.
bobeleanor[/quote]

I went from having 50% failure from age 17 until age 36 then in four months from 50% failure to 100%. The nice folks at Univeristy of Michigan Hospital gave excellent info on the various options PD, Hemo and some home hemo. They have a PA, Charles, who does a wonderful job. He also inserts the permacaths and the PD caths. I was leaning toward PD when things failed completely and quickly so I started on HD. Quite frankly, it was all difficult to swallow. It has taken me 6 years and trying every form of dialysis to finally feel like “I get it.”

After my first failed transplant the UM folks retrofitted my house for a Fresinius Machine which we used at home until my wife’s donated kidney finally rejected (it had stopped working due to FSGS months earlier).

After the nephrectomy, my friends at UM helped me to adjust to PD on a cycler at home. That worked o.k. though I gained 60 pounds, suffered from prophyria cutanae tarda (sp?) due to iron infusions and never had very good energy. I stayed on PD from 2003 - 2004 when I got a second transplant (cadaveric - University Wisconsin). That too failed due to FSGS.

After that I realized I was going to be on dialysis perhaps until my time is over so I didn’t see a need to be connected with a cutting edge hospital. I found a nephrologist in my community - who happened to have been interning at UM during my first tranplant/dialysis time - and have been local with her and no hopsital affiliation since 2005.

In 2006 I decided I wanted to try NxStage (I read about it in Nephrology News) so I went out and found DaVita @ Home in another city asked my doctor to get credentialled and am currently her only patient on NxStage. Her other patients are either on PD or HD at the local Fresinius Center.

That is it in a nutshell. Erich

3

Hi Eric

Thanks Tons . Tell me do you still have to go to center each month? And how far is your and / or center from your house?

thanks
bobeleanor

4

I was dianosed with the beginnings of kideny failure when I was 13. The doctor told me not to worry, that it was no big deal. He said that I would just have to go into the hospital three days a week for a few hours and besides your won’t fail untill your in your thirties or forties. Well he was wrong on many levels. I was 18 and living in San Francisco, I am from Arkansas. One morning I woke up and I couldn’t get up and my eyes were swollen shut. My partner at the time called 911 and the firemen came and carried me to the ambulance. I was told when I got to the hospital that I had a BP of 269 over 187. They asked me how I felt and I said I felt relazed and calm. Later we were told to call my family and get things in order. My partner asked what they meant by that. They took him aside and told him that I was probably going to die before the morning. Well somehow I made it through the night. The sent me home early in the morning and told me to come back after lunch and have a IJ catheter placed. I then went on dialysis at that hospital, General Hosiptal in SF. I was told about PD and Hemo, most of the information I got was against PD. I choose PD and had my catheter removed. Thus begone my constant struggle with the medical world. I went from one clinic to another and one doctor to another, because I was deamed non-compliant. This mostly had to do with my attitude that these people knew as much about what they were doing as bricks did. I continued to want explanations for their actions and continued to fight with each and eveyone of them. Some of them even seamed to have agendas that weren’t in my best interest. Being openly gay and on dialysis is not a great position to be in. I have had nurses that wouldn’t come near me. I even had one nurse come to my door with my dinner tray on one of those bed tables and she just rolled it towards my bed. She wouldn’t even come in my room, as if she would get AIDS from being in the same room as me. Nevermind the fact that I don’t have HIV or AIDS. I have had doctors ask me how long I have been HIV positive more then once. I always have to ask, what do you know that I don’t? They then look shocked and say, what you don’t have HIV? I return with, not since I last checked. It turns out that in my medical records on the front page in big bold black letters at the top it says, Practicing Homesexual. This always makes me laugh, So at one point did I decide I wanted to be a homosexual? As if I am training for some kind of olympics or something. The awfull thing is that my HIV status isn’t mentioned untill the third page. Not that any of these doctors would get that far before deciding that I’m HIV positive. The original doctor mentioned in this long drawn out post. Well I went back to him after being on dialysis for one year. I couldn’t handle it on my own and moved back to arkansas, what a big mistake on some levels. He actually said," it says here you lived in San Francisco, I thought all gay men were HIV positive there." He did turn out to be good in the end and I feel that his knowing me was positive for him. He got me on the right meds and he also helped convince me that things weren’t working for me in Arkansas and that I needed to go back to california. So know twelve years later I am with a super relaxed doctor who knows not to fight with me unless it is very important. He also knows to give me time, that I always say NO at first. If you give me a day or so to think it through I more then likely will say yes.
Anywho, I am not sure this is all on topic. I kinda needed to unload some of this. Thanks Bob for giving a place to get this out. By the way Bob, I like your idea about how dialysis should start. I read it in the thread about that bill passing. Having a more organized way to handle the beginning of dialysis would be great. I just don’t know how it could be implanted in our all ready understaffed and over occupied hospitals. Maybe if access to information about different centers and what not would be a good way to start. Like at the hospital they would give a packet of different information on Neph’s and clinics and treatment options. This still leaves it up to you to do what is needed. Which I know could be very hard for a person just going into failure. So it is not as good as your idea, which would keep the patient in a healthcare facility with people to help direct the patient in making choices for themselves.
Sorry for the long rant.
Peace;
LSB

5

Hey LSB

Rant On…
Man I thought I had a bad treatment from the the world of dialysis. At least with my spina bifida my early time in the medical world were with open and honest people. They could not do much but they look at me as a person that had a right to be treated with respect. I’m now 50 and have a
30 something telling me when and how high to jump. And he is working for and getting pay by the gov’t and my insurance company.

The idea of training in hospital can be done ,If the $$ that control things could be forced to do it. But that only way the dialysis and hospital world could get it done. Both worlds are very happy with the set up. There is nothing to make them change. Beth said that what areas where hospital are far away. So are centers.

bobeleanor

6

Thanks for sharing your story, LSB. I’m glad you got something out of being able to do so. So what was the cause of your kidney failure, if you don’t mind telling us? Were you getting follow up blood tests once a year or so to see how your kidneys were doing?

I ask because there are really two groups of people with CKD-5. One group (about 60% of folks) knows ahead of time–maybe years ahead of time–that they have a kidney problem. Presumably they can (or at least should) get monitoring to see how they’re doing, and there is time to do the kind of education that Bob describes. The other group is what we call “Urgent Start”. They are about 40% of folks with kidney failure–but may not know it at all until 3 months or less before they need dialysis.

In light of the data about having an HD catheter, I’d really like to see as many as possible of the urgent start folks starting on PD. They can learn it in a week, keep their jobs, have a fistula made for later–but avoid an HD catheter, and they learn that they’re in charge on a day-to-day basis (in-center HD folks are, too, most just don’t realize it. You did, which is why you ran into so many problems). If/when PD fails, they can switch to home HD.

7

Glomurelenalnephritis(SP?) from strept throat when I was a kid. No I did not get follow up blood tests my doctor didn’t suggest them. I had all but forgotten that I had kidney problems when they failed.
LSB

8

Just picture me rolling my eyes and shaking my head here. <Sigh> Clearly your pediatrician knew you’d run into problems–he warned your parents. Then it just somehow got lost over time, I suppose. This is exactly what is not supposed to happen, and I’m sorry that it did.

9

[quote=bobeleanor;11567]Hi Eric

Thanks Tons . Tell me do you still have to go to center each month? And how far is your and / or center from your house?

thanks
bobeleanor[/quote]

I go to DaVita @ Home in Flint which is just under one hour away monthly for dietician, social worker, nurse and blount needles and EPO. I see my neph in Lansing about 10 minutes away. My old Fresinius Center was 2 miles away. I often road my bike there which was a real liberating feeling.

Thanks for starting this thread. Erich

10

[quote=Leafsunbear;11571]Glomurelenalnephritis(SP?) from strept throat when I was a kid. No I did not get follow up blood tests my doctor didn’t suggest them. I had all but forgotten that I had kidney problems when they failed.
LSB[/quote]

Just about almost the same situation happened here. I was diagnosed at late birth and an abortion was offered to my mother, she disapproved/declined the abortion and went ahead to have me. From there on no followup.

Throughout time my health just got worse until the age of seven where I started dialysis at children’s hospital in San francisco.

Can you believe I am still here alive? I am glad my mother did not abort me. My choice was “LIFE”…

11

[QUOTE=Dori Schatell;11570]
In light of the data about having an HD catheter, I’d really like to see as many as possible of the urgent start folks starting on PD. They can learn it in a week, keep their jobs, have a fistula made for later–but avoid an HD catheter, and they learn that they’re in charge on a day-to-day basis (in-center HD folks are, too, most just don’t realize it. You did, which is why you ran into so many problems). If/when PD fails, they can switch to home HD.[/QUOTE]

What data are you referring to, Dori? What percentage of patients do you think could feel so well on PD that you think they could keep their jobs?

12

Heather, the DOPPS study–an international comparison of 12 countries that adjusts for age, gender, race, comorbidities, etc. has found (Kidney Int. 2002 Jan;61(1):305-16) that survival on HD is longer for people who start with a fistula or even a graft than with a catheter. Too many other studies to count have found that having an HD catheter creates a much-increased risk of infection and lower survival. This is part of the reason for the Fistula First breakthrough initiative.

Unfortunately, in successfully creating more fistulas in the US, we’ve also increased HD catheter use. In a perfect world, everyone would get the education they need to choose a treatment for kidney failure well in advance of needing one, and to get an access in place for that treatment. But it can take a few months for a fistula to be ready to use–and 40% of people start dialysis with less than 3 months advance warning. So, standard practice has been to put in an HD catheter and then get a fistula created down the road. Of course, these folks pretty much ALL end up on in-center hemo (and most probably don’t know there are any other options).

Each year year, more than 100,000 new people start dialysis–and half of them are under age 65, or “working-age.” Rather than putting in an HD catheter and automatically putting everyone on in-center HD, we could pay some attention to what is going on in people’s lives when their kidneys fail, and try to maintain those lives, including jobs if people still have them (folks who have not had their anemia treated–and 75% of predialysis folks don’t–are less likely to still be working 6 months before starting dialysis).

A well-placed PD catheter can be used the same day it is put in if the patient lies flat and low volumes of PD fluid are used. Or, better, it can be used normally within a week or two. So, if the 3 month lead time for a fistula isn’t available, PD offers a way to avoid a hemo catheter AND:
• It only takes a week to learn how to do PD
• PD maintains residual kidney function longer than in-center HD (longer and/or more frequent HD may do the same)
• People who choose PD are significantly more likely to get a transplant
• PD is more work-friendly than in-center HD
• A fistula can be created with plenty of time for it to mature
• Folks who start on PD may have fewer barriers to home HD if/when PD stops being effective

Etc., etc. We have an article on PD as a first therapy that you can read at: http://www.homedialysis.org/v1/rotating/0206topicofthemonth.shtml

13

quote>Just picture me rolling my eyes and shaking my head here. <Sigh> Clearly your pediatrician knew you’d run into problems–he warned your parents. Then it just somehow got lost over time, I suppose. This is exactly what is not supposed to happen, and I’m sorry that it did.<

Wow, you sure do seem to know everything. I am sorry, but you are wrong. Talk to my mom about it if you need verification. First of all the doctor was not my pediatrician. If you read my post you would realize that he was nephrologist, because after my failure when I went home he wa my neph. My mom was told the same thing I was. She did her own research and when I had some problems later on she tired to get tests done. I was in my father custody then and he would not get the tests done. Also I was amancipated at 16. You don’t have any place rolling your eyes and sighing. You have now idea what my situation was and you can just lump me in with what you have seen. Your experience is not all incompassing.

Also your stuff about HD caths and your info on PD. To hell with your statistics. Statistics are just a way for unrealistic people to hide behind their closed minds. I have had a HD cath for over a year and had no problems with it yet. I have diseased veins and am waiting till after the new year to go for a deep vein fistula. I have seen many people that have gone through more then three atempts at fistulas before success. Also about PD being more friendly for workers. Exactly how is having to do exchanges every day better for workers. Sure if you can use a cycler then ok, but not every PD patient can use a cycler or wants to. Also on HD you can plan your treatments around your job. I don’t see were you get off spouting such one sided info. Ok in certain cases you are right, hell you have the statistics to back yourself up. I happen to have exeperience and observations that says otherwise. I guess it would be good for to apologize for being so blunt, but I am not sorry. I see you post with this air that you seem to know all. You don’t, I don’t either, that is why I often say in my post that this is what I understand about something.
All I can really say is don’t ever roll your eyes at my situation when you don’t know what you are talking about.
Take care;
LSB

14

Sorry, LSB, I wasn’t trying to offend you. You wrote:

“I was dianosed with the beginnings of kideny failure when I was 13. The doctor told me not to worry, that it was no big deal. He said that I would just have to go into the hospital three days a week for a few hours and besides your won’t fail untill your in your thirties or forties. Well he was wrong on many levels.”

You didn’t specify that it was a nephrologist, and most kids see a pediatrician. Cearly your folks were told there could be problems down the line–your mom just wasn’t able to act the information, unfortunately.

Also your stuff about HD caths and your info on PD. To hell with your statistics. Statistics are just a way for unrealistic people to hide behind their closed minds.

Actually, statistics are a way to be sure that we move beyond any one person’s experience and look at the bigger picture. But you are exactly right that statistics do not apply to individuals. They only apply to groups and give you a sense of overall risk–that may or may not be true for your particular case.

I have had a HD cath for over a year and had no problems with it yet. I have diseased veins and am waiting till after the new year to go for a deep vein fistula. I have seen many people that have gone through more then three atempts at fistulas before success.

I’m glad your catheter is working for you. It’s true that some folks have a hard time getting a good fistula made–and if they’re doing in-center HD with blood flow rates of 450 or 500 (compared to 250 or 300 in Japan or Europe), it can be hard to keep even a good fistula working. But if someone can get a good fistula, it can last for 20 or 30+ years–and no other access can do that. (Although you can get a new catheter and use one for a long time. I just read about someone who’s had one for 7 years).

Also about PD being more friendly for workers. Exactly how is having to do exchanges every day better for workers. Sure if you can use a cycler then ok, but not every PD patient can use a cycler or wants to. Also on HD you can plan your treatments around your job. I don’t see were you get off spouting such one sided info.

You’re probably not going to like this, LSB, but this info is based on…statistics, not my own opinion. Beth and I have been working on a paper that looks at all new working-age dialysis patients in the US for a 10-year period, and PD is more work-friendly. CCPD has been gaining ground over CAPD, but even folks who do CAPD only need to do one exchange at work (lunchtime), and some people are able to work that out. On in-center HD, people are less likely to keep their jobs, for whatever reason. I could speculate about why that is, but we weren’t able to look at that.

At any rate, I’m sorry to hear that even though your kidney disease was known when you were a kid, your kidney failure came as a surprise when you were 18. That’s not the way it should happen.

15

Hi Folks

On the fistula first , while I agree that it is better , getting it is not a walk in park. and let face it most fistula that I’ve seen are ugly as sin. I went the whole year with cath, just had a fistula started on11/13/06. I found the cath works great but the draw back me is showering and working with that dressing on it. During the summer it would be bad almost every day due to the work I do. I found a cover for that worked well but they were and still are some $$.

The one of things that I will doing after the fist of the year is seeing my old medical team from years back. And talking to them on ideas. When I was in my early 20’s I was going to school for tool design, I always look at things and said it could be better. You have to know and understand that my age group came up under JFK ( my first memory of TV was JFK and his funeral) and we were the first real group to have TV’s, in most city house holds. Those of you who can recall JFK speech about how people can look at a problem. Some of us took that to mean what it meant. That we can slove most problems we are faced with if we work at it and get the help that is needed along the way.
bobeleanor

16

LSB, I think you totally misread what Dori was trying to say when she said she was rolling her eyes and shaking her head. One of the problems with email or message boards is that it’s hard to know the intent that someone had when they typed what they typed. I’m sure she said this because this is how 40% of people end up in kidney failure with little or no preparation and she was upset that this happened to you because you didn’t get more follow up care. It sounds like you took what she said as meant negatively toward you. I’m sure she didn’t intend for you to think she thought you did anything wrong. I suspect she was thinking that it was too bad that your nephrologist wasn’t more forceful in advising you and your parents, especially your custodial father, how important it was to get follow up care. Getting regular follow up care might have postponed your kidney failure. Neither of us know whether your father who had custody over you understood or believed that your kidney problems could get worse. Denial is a common reaction to kidney (or any health) problems. In any case, the result was that you didn’t get follow up care after your initial diagnosis which led you to nearly die and have to start dialysis on an emergency basis.

I’m really sorry that medical “professionals” treated you the way that they did just because you’re gay. I know some gay people on dialysis and suspect there are many others who are gay but haven’t come out because of just what you experienced. Medical professionals are taught how to protect themselves from infection and should treat everyone the same whether they do or do not have an infection. If they can’t do that or they’re afraid of getting infected, they should get out of the medical field. I hope people today don’t react like they did then, but I suspect some do. There needs to be more education in the medical community on how to treat people with dignity and respect no matter their gender, race, color, religion, sexual orientation, etc. The way you were treated was disrespectful. Your sexual orientation is no one else’s business and in my opinion should not be on the face sheet of your chart. You have the right to ask that to be removed if you believe it affects people’s treatment of you.

As you say, statistics are numbers and not people. However, they are the best we have to explain what happens to people with kidney disease and kidney failure. We use statistics to try to help us understand problems that have occurred so we can keep people from having experiences like yours. I know people who have catheters and haven’t had problems. I’m thrilled you’re one of them. However, data on hundreds of thousands or patients shows that for whatever reason, catheters are more likely to cause problems than grafts or fistulas. Maybe it’s because most patients with catheters are doing dialysis in-center and having multiple staff taking care of them and possibly not doing appropriate catheter care. Maybe it’s poor surgical technique that caused an infection. Maybe it’s because having a catheter in the upper chest can cause scarring of vessels to other places in the upper body. Maybe it’s because the catheter goes into the heart where it doesn’t take much to cause a problem. I’m glad your doing dialysis at home where you’re caring for your catheter because you probably take more pains with it than anyone else might.

Dori and I have been trying to understand how some people keep their jobs as their kidneys are failing while others can’t, looking at things like gender, race, other health conditions, treatment of anemia, choice of first treatment, etc. We hope to publish our data in a major medical journal so that doctors will know the types of things that they can to help people keep their jobs. Our goal is to help keep people with kidney disease and kidney failure from being forced to live in poverty or near poverty as many ESRD patients, especially those without partners, do.

CCPD is more work friendly because you don’t have to interrupt your day (unless you have to do a daytime CAPD exchange). The number of patients on CCPD is growing while the number of patients on CAPD is shrinking, probably in part because of the burden of doing multiple exchanges each day. We believe that home hemo is at least as work friendly as CCPD, but the number of patients on HHD is too small to do meaningful statistics.

I’ve worked with hundreds of patients over my lengthy nephrology social work career. I’ve become such a rehab enthusiast and promoter of employment for people with kidney disease and kidney failure who are physically and emotionally able to work because I’ve seen what a hard life it can be for those living on SSI and SSDI who worry about finding and paying for liveable housing, keeping their car running (or depending on undependable transportation), finding and affording health insurance to pay what Medicare doesn’t, paying routine bills, affording drugs, buying higher protein food, and trying to save a little money to go out to eat or go to a movie or buy something they want.

I hope you (and others on this board) don’t think we’re trying to ram work down people’s throats. We understand that there are patients that are retired because they wanted to retire or are too sick to work. We just hate to see people forced to retire when they’d like to keep working or return to work.

17

Beth

I will give you more of how can to be on dialysis on later post. I’m getting ready to go dialysis now. I like to give input on your and Dori work.
bobeleanor

18

[quote=Gus;11574]Just about almost the same situation happened here. I was diagnosed at late birth and an abortion was offered to my mother, she disapproved/declined the abortion and went ahead to have me. From there on no followup.

Throughout time my health just got worse until the age of seven where I started dialysis at children’s hospital in San francisco.

Can you believe I am still here alive? I am glad my mother did not abort me. My choice was “LIFE”…[/quote]

Gus,

I’m glad your mother didn’t abort you either, however, had she you wouldn’t have none.

You are incredible testament to being able to thrive while on dialysis. I’m glad I know you, cyberlly speaking.

Erich

19

Ralph had diabetes and high blood pressure for years. A great Dr. in Lake George NY told us the first year we were married that if Ralph did not watch his boarderline diabetes and blood pressure that many things could happen to his body including Kidney Failure. He was 29, I was 21 and we both thought it never could happen. Through the years he did TRY (I say that with tongue in cheek). That great Doctor use to call us from Lake Georg (long distance) at 6:30 in the morning to check on how he felt. When that Dr. passed away we started with a dr. in are area. He also was watching and sent us to a nephrologist that would just bring us into the office and say. Your numbers look ok see you in 6 mo. No talk about how to keep thing going in right direction. Ralph got so frustrated with him that he said I am not going to him again. I feel like I am wasting money. So he stopped going. When he got sick in 2001 we had to change to a different nephrologist. What a difference.
I only wish we had seen him first. I am sure with his help Ralph might still be off dialysis. But you know God only gives you what you can handle. So here we are doing dialysis. But rest assured. I talk to everyone and give so much information to diabetics and people with high blood pressure that sometimes I say to myself (SHUT UP ALREADY).
We’ll that is our story.
Pat

20

[quote=Leafsunbear;11579]quote>Just picture me rolling my eyes and shaking my head here. <Sigh> Clearly your pediatrician knew you’d run into problems–he warned your parents. Then it just somehow got lost over time, I suppose. This is exactly what is not supposed to happen, and I’m sorry that it did.<

LSB,

I got to tell you I didn’t read Dori’s post as you did. I’m sorry you found it negative. I read it as I believe Beth read it, that Dori was sorry to hear that your disease couldn’t be better followed and perhaps ESRD being put off for some time. I saw it as an empathetic post.

We need people like Dori and Beth who can be paid to look at the big picture. Sure we all have our own experiences but that is all that they are - our own experiences. Individually they are merely anectodal. “I saw this happen.” “She told me about this person.” “My experience is this.”

It is not until we step back and sample a large population of ESRD patients that we can begin to understand trends such as permacaths and infection rates, success rates at continuing work on various dialysis options, outcomes for PD versus HD, nocturnal HD versus 3x. I know you know all this. I’m guessing you read Dori’s post at a bad time. Lord knows you have had your share of them.

I’m thankful for the good work Dori and Beth are doing. I also understand that the only way to truly know ESRD is to live it, though compassionate intelligent people can certainly empathize with us as many do.

I was able I did work for a while on PD doing three exchanges in my office and then cycling 7 hours at night. As I posted previously it was not enough to keep me functioning and eventually I had to stop working. Even now being on NxStage 6x week I still do not have the consistent energy and focus to go back to work. So if I were to look at my experience I could conclude that no one on dialysis can work. But, I know that isn’t the case because of anectodal information that I get from this website, in-center discussions as well as from research via Nephrology News which concludes that many people can work while on both types of dialysis.

Erich