Welcome!

Discussions for Patients, Family, and Friends HD and PD Care Partners (all home dialysis)
1

I want to join Pat and welcome everyone to this new forum created for home hemodialysis care partners. I appreciate having a place where caregivers can ask questions and support and encourage each other. Caring for a loved one is a wonderful privilege, and both challenging and rewarding.

If you did not have an opportunity to hear today’s web seminar, “The Partner’s Role,” you can go to http://www.kidneysupport.net and click on the recording.

Please use this forum to post your questions and comments. We’d love to hear from you!

Blessings to you!
Laurie

2

Thanks for posting the link - I wanted to participate but there was no way due to work. I’d like to know if there are any other care partners who work full time and try to do the HD treatments 6 nights a week.

3

I should have added that my husband is on the Nx Stage system with the portable dialyzer - we dialyze approximately 2 1/2 hours 6 nights a week - that does not count setup and breakdown time.

4

Hi Jennilee,
Welcome to this forum. My husband Ralph is the “patient”. We also use the Nxstage.
I work 30 hrs a week Mon-Thur 8-4.
We do nocturnal 6 nights a week. I get him on about 9 to 9:15 and we are off about 5:15 in the morning.
Taking him off takes about 10-15 min and then I call into our center with all the particulars. I then feed the dog and take her for her morning walk. Then it is time for me to jump in the shower and off to work.
I meet 3 other people at about 7 for coffee/ me diet coke and a bagel, than off to work.
I will be glad to answer any questions you might have.
Being caregiver is not easy but when you love someone you do what needs to be done.
Last friday we celebrated our 44rd anniversary.
Our love and committment to each other is strong.
Pat

5

Thanks, Pat. We are not doing the nocturnal dialysis, so we generally do ours in the evenings 6 nights a week, as we both work during the day. Of course, one of the great things about the home system is that it frees up a lot more time for my husband on his job - he is a college professor, which is flexible, but this way he is not ducking out 3 times a week to go to the center. He did peritoneal, but we found that the overnight system just took too much time (10 hours) and the four times a day was too hard with him at work. So, this system is pretty much ideal, but it does tie you to the house 6 nights a week, which is new for me. However, my husband feels better on it, and he feels more in control of his own care, so that is worth any inconvenience. I also like the fact that we do it together, which lets me play more of a part in his care. Of course, if I have to go out of town or something, he can always make arrangements to be dialyzed at the center, and he also knows how to handle the majority of the dialysis himself, even sticking himself, if I’m running late or something. One reason we went to this system was also to make traveling easier, since this is portable machine. We hope to go overseas with it in the next couple of years. Thanks for letting me know how you all are handling it.

6

JenniLee, welcome and my hat is off to you for working and helping your husband with dialysis! Way to go! I know I feel so good when my hubby, Ted, feels well and I know I’m able to help him achieve that goal.
We are now retired and at home which is a real blessing. But we started home hemodialysis in 1994 on a big Fresenius E machine while we both were working full-time. We were the first people in our area, North FL, to do home hemodialysis at that time. I taught school and spent one summer with Ted in our clinic being trained. It was a lot more to learn than the NxStage machine, plus we had RO to give us purified water and had to mix 10 gallons of bicarb for each treatment, etc. We only did 3 days/week because back then, that was all that was reimbursed. I remember asking if we could do a 4th day and was told “no.” So, back then, we came home from work, started dialysis around 5 or 6, ate dinner on the machine and finished around 9 or 10 and still had to disinfect, clean up, etc. We ran T-Th-Sat so it only affected 2 workdays.

The sad part was that even with all that work, Ted didn’t feel much better. It was still 3x/week for 4 hours; sometimes we ran another 15 mins but it’s hard to sit that long. We had the convenience of home, which we loved, but we didn’t get any of the health benefits we now enjoy on NxStage, and Ted had to stick to the usual renal diet, etc. etc.

We did that for 6 years until Ted got a transplant. That worked about 5 yrs and when that failed, he was in-center for a short time and then we were able to train on NxStage in Jan 07.

I know it is not easy to dialyze every day, even harder when you’re working. But I applaud you for helping your husband!! The world needs many more wonderful wives like you who know that love = sacrifice and choose to walk that out each day.

Blessings to you!
Laurie

7

Thanks, Laurie. Its good to know that there are other patients out there who recognize the fact that the more dialysis you get, the better off you are. My husband has always advocated for more dialysis time, and he does feel better doing the six nights a week. Of course he can eat and drink more, but regardless of that, the more dialysis you get and the less time between treatments you go, the better you will feel. He used to get upset when he was at the center and they would try to cut his time for some reason, such as inclement weather - he would go back the next day and make it up! Too many dialysis patients want to spend as little time on the machine as possible, and while that is understandable, it is bad for their health.

8

Hi Everyone,
I am new to this forum and fairly new to dialysis. My husband has been on dialysis for almost a year and has it done at a center. We are seriously considering home dialysis. It will be Nxstage or this new procedure NanoDialysis.
My problem is that I’m very scared about doing this. I don’t know how I will be able to do the needles, and I’m so affraid of something going wrong.
Do you have any suggestions or encouragement.I would appreciate any advice.

Thanks so much,

JoAnn

9

Dear JoAnn,
I truly understand the fear you feel about doing dialysis; I had the same reaction when we first started! I think we all have. For myself, as a Christian, I pray and have learned to trust the Lord in a much deeper way since tackling something like dialysis that was so beyond my own ability. I have also learned not to let fear rob me of God’s greatest blessings.

And daily home dialysis has become a great blessing for my husband, Ted, and I. Ted feels so much better; it’s the difference between day & night! He started dialysis in 1988, has had 2 transplants, has done in-center dialysis 3x/week for many years, and we have done home dialysis for over 7 years now, first on a big Fresenius machine and over the past 19 months, on NxStage.

NxStage is much easier to use than the big clinic machines. It is still a lot to learn, and it is a commitment of time and energy each day - a commitment I think that is well worth it. You clinic will train you & help you along the way and it will get easier as you go.

I remember when I first learned to drive, many years ago. It was stick shift back then & I thought I’d never figure out how to use the clutch, shift gears, and drive all at the same time; I was terrified I’d hit something and hurt (or kill!) myself or someone else! I very much wanted to drive, so I set the fear aside as best I could and practiced (a lot!) until I finally felt confident.

We all face fearful situations in life. I encourage you to ask lots of questions - here, and at your clinic - and look ahead to the benefits you and your husband will enjoy. He can dialyze at home, be with you rather than away at a clinic, and he will feel much, much better. He’ll be able to eat a much more normal diet, drink a bit more, and he’ll have energy and a feeling of well-being again. You cannot get those benefits dialyzing just 3 days/week.

You will be trained along with your husband. You will not be alone doing the treatment. In fact, NxStage encourages the patient to do as much of the treatment as they can for themself, and that includes inserting the needles! Most pts can cannulate themselves. My husband cannot as his fistula is in the underside of his upper right arm. He cannot see it well and is right handed. He does do much of the rest of his treatment though. Dialysis is something we do together and the two of you together are stronger than one of you alone. Together, you can do it!

Keep your eye on the prize; the prize of a healthier husband who is well dialyzed! Ted feels better now than when he had his transplant. It makes me feel so good to know that each day I can do something to help him lead a healthy, happy life. I think of some other wives I know whose husbands have cancer or other serious diseases and there is little they can do. With dialysis, I have a choice. It’s hard work and the first few months seemed overwhelming. But I’m so glad we “took the plunge”, overcame our fears, and hung in there. I think you will be, too!

What is NanoDialysis? Is it available at your clinic? This is a new one to me!

Blessings to you, JoAnn. Please stay in touch ~
Laurie
Laurie@FutureChristianHomemakers.com

10

I think everyone feels overwhelmed about learning to help with the dialysis, especially about the needle sticks. However, they take the training as slow as you need to, until you feel comfortable with everything. Laurie’s analogy of learning to drive a stick shift is a good one - it’s one of those things that you think you will never be comfortable with at first, but one day you realize that you are doing it without even thinking about it (well, you should always be thinking when dialyzing, but you know what I mean). You always have your manuals to refer back to, plus you can call NxStage at any hour of the day or night if you have a question or problem, and they are very helpful.

I agree with Laurie that this system is much better for the patient - more dialysis means you feel better and can eat and drink more, and it’s much easier to work with this system too. Also, I find that patients who are doing this take more responsibility for their own health, and I like the fact that I am participating in something that is so much a part of my husband’s life.

11

My mom will start home dialysis. But we do have a dog. Do we have to give up on our dog?

12

Hi Helen,
You can keep your doggie! Store supplies out of the dog’s reach and when you’re connecting your mom to the machine, doing a dressing change (if she has a catheter), or anything that requires sterile connections, then keep the dog out of the room for that short time. Obviously, don’t let the dog lick your mom’s arm if she’s got needles in that arm, or chew on bloodlines - just common sense kind of precautions. We don’t have any pets, but I know other people do & enjoy their dog being near them once they are on the machine.

Maybe some other dog owner’s can give more tips than I can offer…

Blessings to you & your mom!
Laurie

13

Hi Laurie,

Thanks a lot for your reply. I am glad to hear that we might keep our doggy. Mom says that her doctor told her to give up the doggy.

I will let her read these answers:):slight_smile: Thanks again

14

Hi Helen,
By all means KEEP your dog. I know we have a peekapoo that I would not trade for anything. When we first got her (she was a rescue) Ralph was already doing home dialysis (with the Fresenius machine & RO). She was taught to site at the door and watch. When we were done putting him, she was allowed to sit at the end of the bed. Take the time to train the dog to do what you want so you won’t have to worry.
A few time when there were alarms with the Nxstage she would sit right up and watch to be sure Ralph was OK. Having an animal is such a joy not only for Ralph but for me as well. As a caregiver I enjoy my time walking her and playing with her. (Stress release).
Good luck.
Pat

15

I can’t imagine why the doctor said no dog - just use common sense precautions like the others have mentioned - keep your dog out of the room while hooking up and unhooking and keep him out of the supplies, and you should be fine. Dialysis patients have to give up some things, they shouldn’t have to give up a beloved pet!

16

Helen, I asked some of the dog owners on our NxStage online group to share their experiences & tips on dialyzing at home and their dog. So watch for more answers. Is your mom going to train on NxStage? What type of home dialysis will she be doing?

Ask the doc why he thinks your mom should give up the dog. I’d be curious to know why he’d suggest such a thing! Pets are great companions and stress relievers, as Pat mentioned.

Hope you’ll stay in touch and let us know how you and your mom are doing. :slight_smile:

Blessings to you!
Laurie

17

I wish I could post the photo of my 66 pound Golden Retriever sitting on my lap while I’m hooked to the NxStage dialysis machine. I have never heard of anyone having to give up any pet because they had to start dialysis. Maybe a peritoneal dialysis patient would have to keep a pet out of a room while they did exchanges but that would be all. Connie, Cody’s Mom.

18

I have an eight year old standard Schnauzer named Ilsa who is part of our family. I do home hemodialysis and when I set up the equipment she is around but never gets in the way. When I started home hemo I would ask her to go the other side of the room and lie down until I released her. Now, once she sees me grab the needles she leaves the room. When she hears the machine running she returns and sits at my feet. I have never had a problem and all I did was some basic dog training, all simple stuff.

During non dialysis times Ilsa often sits in my lap even though she is 35 pounds but she seems to know that my lap is off limits during dialysis.

When I was on peritoneal dialysis the rules seemed to be a lot stricter and the dog had to leave the room when I connected or disconnected. No big deal, I just closed the door to the room until I was connected and then opened it.

My nephrologist and the clinic nurses know that I have a dog and that she sits with me while I dialyze. I even brought the dog to my home training clinic and she was a big hit. I did not take her past the waiting room and some of the patients were disappointed.

In my opinion you have to decide for yourself if you trust your dog to behave while you are on dialysis. Some breeds are a little high strung and others are a little “dopey” and uncontrollable. If this is the case you can simply put the dog in another room while you dialyze or if it is crate trained put it in a crate. Getting rid of the dog would be for me the very, very last resort.

Good luck,

Arnie

19

Thank you all very very much for your really very valuable answers. We are living in Turkey, and only a small percentage of homes do have pets here. In the last 10 years it increased but with bad results. Because the awareness of how to deal with pets is still quite low. This is the reason why pets are often abandondend. Thanks god since approximately 5 years we do have pet shelters for those abondended ones. But it is always essential that volunteers are working in these shelters to protect the dogs from unskilled workers. My doggy is also a rescue. She is trained not to enter the kitchen, bathrooms and my moms room. She never climbes sofas etc. And together with your answers I thinks I will succed to keep her.

Because I was not convinced by the doctors message regarding the doggy, my mom told me that her doctor wants to meet me and talk to me about the sterile conditions necessary - including why a dog could not be in the house. I will show this doctor your answers. Hope he or she reads english:-)

Your answer will really protect me and my doogy from a seperation.

Comming to the type of dialysis my mom will take: I think it is the one called Peridontal Dialysis. She is going to use a dialysys for 8 hours at night from her belly. what is the difference with NxStage? Is NxStage a newer method? Is it better ore more convenient?

Regards from Istanbul, Helen

20

Hi Helen,
Wow, all the way from Turkey! I hope you can translate the messages if the doc does not read English. Peritoneal dialysis is what your mom is going to do, from what you describe.

NxStage is hemodialysis done at home, but it is new here and not available overseas. Maybe someday, but I don’t know when. With hemodialysis, you have to access the blood stream directly, usually by placing needles into an access the surgeon creates in the arm (but also done with a catheter in the chest or neck area usually as a temporary access).

My husband has never been on peritoneal dialysis so I don’t know enough about it and the concerns about the dog. I think Arnie described the situation well; if you can keep the dog off the bed near your mom, or from interfering with the machine, and keep her away during the connect & disconnect times it should be no problem. You know the dog & her temperament and how you can control her best.

Go to the home page of this website, www.homedialysis.org and you will find more information on the types of dialysis, as well as a message board for PD (peritoneal dialysis) - that should also be helpful. Your English is great!!

Blessings to you!
Laurie