Hello- I'm new w/ lot of questions

Hello Everyone,

My name is Jennifer and my husband Dave, 35, has FSGS. He was diagnosed 3-1/2 years. We will start the home dialysis classes in July and was wondering if you all could give us some advice- we are both really scared!!

Dave is not one to ask questions but I have a million. I’ve been reading the forums and I’m tring to learn as much as possible. I certianly would appreceiate any information so we are better prepared.

Does dialysis hurt? What will he feel?
What are the important things to ask during the classes?
Does anyone have mulitple caregivers? (We have a 3 month old baby boy- Mason)
How often do emergencies happen? Do you feel prepared?
Is anyone else scared of needles?
Does anyone work fulltime? Are you tired?

Well- you can see my questions are scattered- anything will help!!! I look forward to hearing from you.

Thank you very much,

Hi jen,

I also have fsgs been on dialysis 7 yrs-diagnosed about 2 yrs earlier

1.does it hurt?-The process doesn’t hurt -needles might(you said something about fear of them so I assume you will be doing hemodialysis) Their are many things you can use for the pain so don’t be overly worried about that. Does he have a fistula or a graft? If he has a fistula I strongly recomend buttonholes(but that is a whole other subject)

2.what will he feel? He will have some of his blood outside of his body so he may feel a little cold. When I first started I was more sensitive so I could taste some of the medicines and saline that they used, but not anymore, besides it wasn’t a bad taste just that I could tell.

  1. what should you ask?I think it is important to ask absolutly what you should not do once you get home. I have heard some things that make me cringe such as having pets with you while you dialyze. Maybe after you hook up would be ok but I wouldn’t suggest it. If you have a mask on the dog should too-don’t you think? He licks his butt ya’ know lol. Everything else they will tell you (how to set up and what you need etc.)

4.multiple caregivers? I do have more than one my main one is also my main man, he is with 98% My sister is my other-both had to go to training though

5.emergencies?This will be different depending on what type of machine you use and if it is prone to malfunctions or not.
For me - a couple of times the power went out and I did the emergency takeoff procedure and there is nothing to it (maybe 2 times in 5 yrs)- so to answer you yes very

6.needles? When I was first starting I was VERY scared- now piece of cake

  1. working? when I first got on dialysis I worked it was very hard for me, but we have a car salesman in our home group and a car rental co. owner both work 40-60 hrs per week by the way and a mom who had 2 count em 2 babies on home hemo

8.am I tired? What a whopper of a question harder to answer than any of the others
I will always have FSGS so for my condition I am doing better than great. I work out now when I could barely walk b4, but I don’t feel like myself b4 I got sick. I have a new scale now! That old wellness scale got FSGS too!lol So yes I am tired compared to 10 yrs ago but no compared to yesterday. Hope that makes sense

Go to the center find someone that looks about his age or that is friendly and talk to them.
We are often afraid of what is unfamiliar to us maybe you will be more at ease.

Lastly kidney dialysis is a blessing from Jehovah-There is no other organ that could shut down and you still live! Live each day as if it was personally given as a life extension from God (like clemency from death row-if you will)even if it seems hard look at what a wonderful return you will receive on your investment!

Jennifer, it sounds like Dave has never done dialysis and he will be starting at home right off the bat. You’ve come to the right place. The most important advice anybody can give is to be positive. Life does go on. However,my own advice has always been that people should start off in-center so they can familiarize themselves with the procedd as they get their access formed. Personally, I also think people need to learn to hate dialysis in an in-center location to fully appreciate home hemo. Home means 6X vs.3X per week. But the benefits are so numerous to make it worthwhile. I’ve heard from my nephrodoc who in turn learned at conferences that most patients who fail at home are ones who started there in the first place.

I’m sure other are going to want to know what Dave’s treatment plan will be regarding which machine, clinic, etc.

Getting to your questions, I would suggest you break thiem into separate threads because you will get a slew of answers and it might be hard to keep everything straight, I’ll try to answer a few but please remember that dialysis is different fro every person.

Hurt? Not me, the only thing that can is cannulation (sticking) which most get used to.
Feeling? Probably nothing,
Things to ask in class? Separate Thread
Emergencies? Rarely. I did have a non-emergency problem tonight but was able to rectify w/one phone call. I always feel prepared, but that does come with experience and attitude.
Needles? No, but others may be scared since dhildhood. One will have to get over it then, or choose PD.
I know some who work fulltime, but most don’t.
Tired? Part of dialysis. Worse in-center.

Good luck and welcome.

Rich Berkowitz
NxStage 2/06
In-center 3/03

Rich is right! so so so so so so so right! You need to know what you have when you are at home and we don’t need any one messing up, so we have only good things to report to the government- so home hemo can get better funding! We have a girl now who they asked me to talk to more than once who whines and complaines all the time ! when she got her plumbing done she did it the cheap way she didn’t want to have the plumber run water lines from the basement upstairs so she had them put her water system on her second floor now lets think about this water system= water right? on carpet duh? anyway she is mad with the nurses that SHE gets water on the floor when she changes the cartridges. Amongst all the other things she is mad about -but just like Rich said she also came straight to the home program and quietly they probably want her to go in center. Consider that carefully

[QUOTE=Jen&Dave;13694]Hello Everyone,
My name is Jennifer and my husband Dave, 35, has FSGS. He was diagnosed 3-1/2 years. We will start the home dialysis classes in July and was wondering if you all could give us some advice- we are both really scared!! [/QUOTE]
Welcome to Home Dialysis Central, Jennifer. I think that anyone who isn’t scared at the thought of starting dialysis isn’t really fully processing it. So, being scared can be a good thing–especially if it motivates you to reach out and find support and information to ease your fears. We have both here. :slight_smile: Plus, you and Dave are somehow going through all this with a new, tiny baby–and probably not too much sleep! More power to you.

My mentor is the home hemo partner of a man who lost his kidney function while he was in medical school, and their first son was a small infant, too. Now, 34 years later, he still works full-time as a doctor. Last weekend, Nancy Spaeth stayed at my house while doing some geneology research. Her kidneys failed in 1966. You can have a full life together, and choosing home treatment is a great way to start.

The non-profit Medical Education Institute, which created this site, has another site you might also want to check out for background information before you start your classes:
Kidney School™ (http://www.kidneyschool.org is a kidney learning center in 16 modules, each on a different topic. You can go through the modules “live” or download the pdfs and read them. (In module 1, you can even meet Nancy Spaeth). You might want to start with the Coping module, but you can go to any module in any order, any time you like. And they’re free.

Can Dave work? Yes, if he gets good dialysis so he feels well. Keeping a job is more likely with home dialysis than with in-center treatment, and at 35, he has a lot of living ahead of him.

Is he also on the transplant list?

Wow! Thank you all so much for taking time to write back.

I will certianly talk to Dave about going to in-center. I have asked his neph. doctor to give us a tour of the center but they said “no”- reason- “it is too depressing and the people are very sick, you don’t want to see it.” So we have never seen in-center. I work fulltime so there will be times he will HAVE to go.

Dave is on 2 transplant lists, they say with his blood type, O negative, it will be at least 2-3 years. I am not a match and no other relatives have stepped up- most have hypertension anyway and can’t. Nephro. recommends a cadavor because of the FSGS- higher rejection rates.

Dave works fulltime now as a state trooper. He is very active and in good shape- except his kidneys. He works 2wks days/2wks nights. So i’ve been praying he will still be able to work- he absoulty loves what he does.

Again, thank you all so much!! I’ll post questions as they come- you all are such an amazing group!!


Jennifer, another option that would make it easier for Dave to keep his job is to start with PD instead of in-center hemo. Here is an article about why PD is a good first treatment: http://www.homedialysis.org/resources/tom/200602/. He would likely feel better and be much more likely to keep his job on PD than on in-center hemo, and lots of people successfully go from PD to home hemo.


Thank you- We reseached both PD and HD and were set on doing PD becasue of his job. We told his Doctors that we had choosen PD, they said great everything was set for PD. THEN at our first consutation meeting with the educators they tell us that he would not be able to lift anything over 20 lbs for 3months with PD. Dave can not do that with his job- he does not know what will happen from day to day. That is why we are not doing PD. Trust me- we both wish we could have started PD 1st.

Have you ever heard of the 20lb limit for 3 months?


Ohhh, Jennifer, that does make sense, actually. What you don’t want to do when you’re new on PD is anything that will raise intraabdominal pressure–and that could include lifting heavy items. In Dave’s work, there’s no way for him to predict when he might need to do that.

Okay, if that won’t work, I wonder if there might be an in-center nocturnal program in your area? That way, he could get used to the treatment while still getting the best possible care and feeling well enough to keep working. It’s harder to find those programs because we don’t have a complete list of them, but if you don’t mind telling us where you’re from, we could see what we can find. Also, that would mean sleeping at the center 3 nights/week–but only until you train for home.

Another option is to take a leave of absence from work for at least part of the time until he’s used to treatment, you get the training done, and he’s home. Beth can chime in here, but if the Dept. he works for has more than 50 employees, he should be eligible to take Family and Medical Leave Act time, which can be used in increments as small as 15 minutes at a time.


Your sugguestions are great- unfortunatly we live in an area where Noctural is not an option- I’ve already checked. Home hemo will be the way we go and Dave will have to go in center when I am unable to be with him. I hope he will be able to keep working- it will be trial and error for the first six months. His work has been very understanding about all of this- yet he hasn’t been on dyalysis either! Waiting to see how understanding they will be then- and yes he does have FMLA :). Pray for us!!

Thank you again,

If your husband chose to do PD, it probably would be necessary for him to take some time off for the surgery, healing, and training. If he chose to do CCPD, he’d have little or no fluid in his abdomen during the time he was off the cycler. This would reduce the chances that he’d develop a leak or a hernia, even if he had to occasionally lift something. From what I’'ve heard from PD nurse friends, if the catheter cuffs are sewn in correctly and the fluid exchanges aren’t too large, the chance of developing a leak is small. Straining to have a bowel movement, coughing, or lifting can cause cause intra-abdominal pressure. Having 2 L of fluid in the abdomen when you do that kind of straining can theoretically cause a hernia. However, from what I’ve read of research in PD, hernia and leaking is much more likely with CAPD than with CCPD and some people are more prone to hernias than others.

Dori discussed the FMLA briefly. People with kidney disease/kidney failure are protected under the Americans with Disabilities Act (ADA) if they work in companies with 15 or more employees. An employee with a disability has the right to request an accommodation that will allow him/her to perform the essential functions of his/her job. As long as the accommodation requested is not an undue burden (usually translates to money), the employer is supposed to accommodate the person with the disability. The employer is also not supposed to discriminate against the person with a disability (whether or not he/she asks for accommodation) in raises, promotions, etc. There are various ways that your husband could ask to be accommodated. For example, he could request to have a partner who could do lifting for him while his PD catheter is healing or he could ask for a shift that would work with your schedule so you could always help him do dialysis. If he worked days all the time, he could “job share” with someone who might prefer to work nights all the time. Some people just don’t do well with rotating shifts and he may find that someone he works with would appreciate having the same shift all the time for personal reasons too. He may be reluctant to ask, but I’d much rather see him ask for accommodation and be able to keep his job long-term than to see him try to “tough it out” and have to shift back and forth from in-center to home hemo and possibly not feel well enough (especially doing in-center dialysis) to continue to work. Having a job that you enjoy is too important in this world.

He could ask the nephrologist and the dialysis clinic about if it would be possible for him to be trained to do everything so if you weren’t available, he could do dialysis with a friend or neighbor as the extra pair of hands to get something when he’s on dialysis or make a phone call in an emergency. With short daily dialysis, this wouldn’t be asking too, too much of someone occasionally. And some patients have hired helpers. When I worked in dialysis, we had a patient who had a hired helper. We trained the technician to assure that she knew what she was doing and the patient was her employer. I don’t know if his health coverage would pay for a helper, but Medicare won’t pay for a helper.

Patients that do dialysis during the day (conventional 3 times a week or daily home hemo) generally have helpers. However, I know some patients on nocturnal home hemo who do not have partners. Even if they have a partner, both are sleeping while dialysis is going on so no one is actually watching every minute. Even though the machine makers have to say that a partner is recommended for the FDA to approve machines, the clinic sets the rules on whether a partner is required. It often depends on the level of trust between the patient and the clinic and, most importantly, whether the patient is medically stable.

I’d also ask the home training nurse if you can talk with patients who have been doing PD or home hemo for at least a year and who have talked with other patients. This is a great way to find out what it’s really like to do dialysis. Staff can tell you what it’s like from a clinical standpoint, but patients can give you the “lived experience.” The people that post on our message boards are another source of information and support.

Finally, I hate to hear staff describe their in-center clinic as depressing. It is true that in-center patients are likely to be more unstable than patients at home, but there are probably some dialysis shifts where patients are less ill than others. Besides, there are ways to make the clinic environment less depressing, including promoting exercise on dialysis, encouraging patients to bring in things to do while they dialyze instead of sleeping, educating and encouraging patients to do as much of their care as possible, and finally, encouraging staff to spend time talking with patients instead of talking with one another.

Can he do nocturnal at home? Hubby has been doing it since Oct. 06. He would be good for him to start in center. Really good advice is to take a leave of absence until he gets used to dialysis. It takes a while for your body to get used to the changes and a while for you to get used to it mentally.

I have been on home dialysis for about a year now. Your questions are all good and all answers are quite good also. MY experience to answer your questions are:
1.Does dialysis hurt? What will he feel?
Dialysis on its own does not hurt. The needling part does, but you learn to tolerate that pain quite fast (I don’t like to say that you get “used to” pain…who can?). If you keep your blood preassure in line, all goes fine. You might get dizzy or sick if the machine is taking more fluid than your boday can handle.
As a fact, once on dialysis you do not feel a thing.

  1. What are the important things to ask during the classes?
    Ask everithing that comes to mind. Each day after training you will come back home and questions will start dancing in your head. Write them down and ask, ask, ask…

  2. Does anyone have mulitple caregivers? (We have a 3 month old baby boy- Mason)
    I do dialysis alone at home while my wife goes to work. She was trained with me, but I feel capable to do it on my own. I have a phone next to me at all times, with speed dial for emergencies. I have never have to use it for that. I do reccomend you to get a non wireless phone, as when the power goes out you will allways be connected to your nurses, doctors and technicians.
    Sometimes things happen (remember that we are connected to a machine and machines sometimes have pproblems)…but I know how to react. Every day I learn something new…

How often do emergencies happen? Do you feel prepared?
Few times…more than “emergencies” are “issues” that can be resolved over the phone. At the beginning is scary, but then you know and react accordongly.

Is anyone else scared of needles?
I was QUITE A BIT. Is unnatural to insert a needle in your own body…It took me a while to get used to it. Now, I do buttomhole technique and I will not let anybody to needle me…funny the way our brains work.

Does anyone work fulltime? Are you tired?
I used to work full time, but after a year i could not handle it…I was very tired most of the time. I work from home now, with a laptop and I program meetings ahead of time and I program my dialysis with that in mind. I teach at night 3 days a week and I can handle that as I do dialysis before going to class…
Tired?..YES. But I do a bit here and a bit there. It bothers me, but is a side effect…
I hope this helps. These are my two cents woth…good luck!

There is also a lifting restriction with Hemodialysis too, especially if you have a fistula. Any overexertion can cause a problem there also.

Funny you’d mention that, Roy, because I just today–at Beth’s request–emailed someone from Fistula First to get some clarification on that. Some folks do heavy-duty weightlifting on HD with a fistula. I believe that the issue is holding something heavy across a fistula, which might lead to cutting off blood flow and risking a clot. When you do weight lifting, you hold the weights in your hands, not across your fistula arm…

But, as a State Trooper, you might well end up carrying someone heavy in your arms or picking up something using your arms and not just your hands, so that’s a really good point for someone with a wrist or forearm fistula (I’d think this would be less of a problem with an upper-outer arm fistula). If/when I hear back from the Fistula First person, I’ll post something here, too.

I have searched for research on how much weight someone with a vascular access can safely lift. Routinely patients are told to not lift heavy items when they have surgery to place a vascular access for dialysis. Unfortunately, no one tells patients when this restriction can be modified. It is important to restrict lifting anything heavy while the internal and external stitches are healing. However, I have known patients who were bodybuilders or regularly did exercises like push ups and had no problem with their access. It’s always a good idea to talk with your doctor before you lift bodybuilding weights. And everyone agrees that you should never allow anything to lie on your dialysis access that could stop the flow of blood through it.

There have been a number of studies that discuss the benefits of exercise for people on dialysis. The most recent study I can find was just published in May 2007 in the Journal of the American Society of Nephrology. It reports how a 12-week resistance training program including weightlifting during dialysis can help patients improve muscle attenuation and strength. Patients who exercised also reported significantly better sense of vitality compared with patients who did not exercise.

You can find other studies by looking on PubMed for “exercise” & “dialysis.”

The Life Options’ exercise materials are listed among its other free booklets:

I couldn’t do my job or travel with the NxStage by myself if there was a weight lifting restriction. I had my fistula placed in May of 1990 and had my first revision earlier this year - the only restriction I had heard (prior to the occasional internet question) was the restriction Dori outlined - placing a strap across the fistula (mine is right forearm) or wearing an elastic cuff, etc.

All after, as Beth says, post surgical resting. And I should also say that I limit my flexing immediately after dialysis to prevent a puncture site from opening, although that has never happened and I have gone straight to work after dialysis, with no thought to the punctures.

And let me just say to any entity in charge of jinxing, that I am providing this information as a courtesy. I am not bragging, I do knock on wood. I am grateful.

Jennifer, be sure and check with your center if you are able to switch back and forth between in center and home hemo. My center told me that once you are doing home hemo, in center hemo is only possible on rare occasions like machine failure, etc. They say it is some kind of insurance problem to do both. Hope they can help you out. In center would be a nice break on occasion, but for us it isn’t an option.

That sucks, mglover. Over here in Aussieland I consider it my right to go back incenter if I need a break from home dialysis. As dialysis is paid for by the government over here and me doing it at home is saving them a bucketload of money, if I need a break I expect to be able to have one without having to plead my case! Insurance sounds like it is used as an excuse all too often over there!

I find that very interesting because from what I understand our center only has to change the coding to whether you are home, in-center or in the hospital.
I know that if we went back to our center we would probably have to go farther than we did originally. Rubin has 3 centers. The one we started out in is running 3 slhifts a day for 6 days. One of the other centers would take us. We were told we would always have a spot at the Rubin, whether it is Clifton Park, Troy or Saratoga.