Is Home Dialysis for Everyone?

Good morning to you all. I am new to the forum. I have read many of your posts and I applaud you all for the undertaking of home dialysis while continuing with your regular life duties. I have a question though.

My husband had a stroke and he is on a ventilator and receiving dialysis 3 times a week. He is semi-conscious most of the time. The doctors say I can bring him home even though he has the ventilator, and he requires a nurse and a cna as well as my family to assist with his care. Is he a candidate for home dialysis?

Any info you could provide would be very helpful and I thank you. Bless you all.

Vernie,

I’m so sorry to hear that your husband is so ill.

We find that there are two groups of folks who do home dialysis. The first group–and the one most people think of–is active, independent folks who want better care and are willing to learn how to get it at home. They may or may not have partners–some folks do home dialysis by themselves, so partner involvement may be as low as 0%.

The second group is made up of folks who are very ill or frail and whose families prefer to care for them at home. So, partner involvement in these cases tends to be 100%. It’s actually hard to find a center that is even willing to care for someone who is on a ventilator, so you’ve been lucky so far.

Does your husband have an Advance Directive? Are you certain that his wish is to continue to have dialysis while semiconscious most of the time and on a ventilator? Is that your wish for him? How are his prospects for recovery from his stroke? I’m sure you can see where I’m going with this. One option that is sometimes not fully explained is the option of no treatment. Dialysis can be done, but it’s not always the right choice. This is something that only he can decide, with your help, and your spiritual advisor, his care team, and especially the social worker can help you think about it.

Hi Dori,

I do not know what an advance directive is so I am pretty sure he doesn’t have it. He is unable to speak and unaware of what is happening to him so I do not know if he prefers any type of care that he is receiving. I do know that he is fighting very hard to stay alive and has amazed the doctors with his determination.
My wish is what is best for him, my wants are second it is all about what is best for him and his recovery. This is 8 months later, his stroke was in July and miracles happen everyday, so…

The decisions that are made on his behalf are done my myself and our children who are all adults, and I believe and have seen that he is better when we are there with him, so we have been inquiring about home dialysis in order to facilitate his recovery.

Hi vernie46

As someone who is on dialysis 6 nights a wk. If your Family should want to go with a home program. Made no mistakes as to the work that will be there for someone or a group help thing to undertake…

The dialysis I do is a close too a full time job.( some may say is a full time job) And at times the mental outlook plays a big role in my life. I have a very strong and helpful wife. Who at times I don’t know why she puts up with me.

You need space , someone to make sure all supplies are ordered, and make sure that person understands what they need too do. You need to pick a type that fits things in your life … I’m a all for home hemo.

I have advance directive that says I will not go back into center. And I will not have other people do all my work. If I end up in wheel chair and can not handle my personal care then I want to stop. This is my own AD

I will Keep Your Family in my Thoughts and Prayers

bobeleanor

Hi Vernie,

An Advance Directive is a way to tell your loved ones and your doctor about your wishes in case something (like a stroke) happens to you medically and you can no longer communicate them. We should all have one–or, at the very least–talk about what you’d want so your family will know in case something happens. Here’s a Mayo Clinic website with some info: http://www.mayoclinic.com/print/living-wills/HA00014/METHOD=print.

I have no doubt that you are right about him doing better when you’re with him. It may be less hassle to learn how to do home treatments and deal with the equipment and ordering supplies and such than it is to transport him to a center and back 3x/week.

You can learn about different types of home dialysis on this site at: http://www.homedialysis.org/learn/types/ and find centers that train folks for home treatments at: http://search.homedialysis.org/locate/search/. Once you’ve had a chance to look those over, feel free to ask if you have more questions.

Hi bobeleanor,

Thanks for sharing. Your wife puts up with you because she loves you! I have space and dedicated family willing to help.

The advance directive is not a document we possess so for now all decisions are made by myself and the children. I realize this is a huge undertaking, but the longer he stays in the re-hab facilities the sicker he gets. He has almost died twice because of their incompetence and I do not want there to be a third time.

What is most important for me is the decision to do what is best for him and even though he has a ventilator we are more than willing to be trained so that he can come home. I am truly confused on what to do next. He is currently in ICU because of a botched up g-tube insertion and I have to draw the line somewhere.

Thank you for sharing and I applaud your success with home dialysis. Good luck and god bless you and your wife.

Thanks Dori,

I will check out these sights. I currently have a lot to do. I want to make informed decisions not emotional ones and it has to be the best thing for him. Thanks again. I will keep you posted. God bless you.

Vernie,
Please check your private messages : )

Jane

Hi Vernie

A couple of questions you and your family might want to think on. Do you now go to a center and is the center clean and allow family members to sit with Your Husband? Is the center close and do they work with you on time?

I’m all for home hemo if the family members are more than willing to help as team. I don’t know how many family members you have in total, but each person will need a break from time to time and surport. I’m sure you and your family will also get postive feed back from this site. This site was a major help in my life.

Best To all

Bob OBrien

[QUOTE=vernie46;15746]Good morning to you all. I am new to the forum. I have read many of your posts and I applaud you all for the undertaking of home dialysis while continuing with your regular life duties. I have a question though.

My husband had a stroke and he is on a ventilator and receiving dialysis 3 times a week. He is semi-conscious most of the time. The doctors say I can bring him home even though he has the ventilator, and he requires a nurse and a cna as well as my family to assist with his care. Is he a candidate for home dialysis?

Any info you could provide would be very helpful and I thank you. Bless you all.[/QUOTE]

The Northwest Kidney Centers has provided home dialysis to people in your husband’s situation. Would the nurse and cna be able to assist with dialysis?

I think dialysis at home would be much easier on him - maybe you would consider every other day dialysis - most payers will support that choice. If you’re already providing 24/7 care every other day should be an option. Do you have specific concerns? I think it is likely that he would get better care at home than he would incenter.

I have talked with several families of patients who have loved ones who have had strokes and are on ventilators. They have looked into options for home dialysis including getting trained themseles or hiring someone who is already trained to do the dialysis for their loved one. Here are some things to consider.

It costs a dialysis clinic a lot of money to train a patient/family to do home dialysis and if someone has Medicare, the reimbursement is so low that it takes a year or longer to make up the cost of training so clinics want to train patients who will be healthy enough to stay on home dialysis longer than that. This may be one question to ask your husband’s nephrologist who would be the best doctor to evaluate that.

Typically training is done while the patient is receiving dialysis which generally means that the patient must go to the training site at least 3 times a week for up to 25 training sessions – this could be very hard on someone like your husband. The alternative would be to find a dialysis clinic that would train a patient in his/her home. Peritoneal dialysis training is much faster (usually requires 1-2 weeks of training 5 days a week). However, you’d need to ask his nephrologist if that’s an option with his other health needs.

If getting your husband back and forth to dialysis clinic too difficult, some people have hired trained nurses or technicians to do hemodialysis or peritoneal dialysis. You could look on our homepage to see if there are any “staff assisted home dialysis” programs in your area or ask your husband’s nephrologist if there are staff that you could hire part-time to dialyze him. Medicare does’t pay for this, but commercial insurance and some state Medicaid agencies do.

It sounds like you have a very close family. It must be very hard to see your husband the way he is now. It’s a huge responsibility to be the decision-maker in a situation like this. An advance directive (living will or durable power of attorney for healthcare) could have helped you advocate for your husband to get the treatment he wanted based on the quality of life he has/could be expected to achieve. Some people choose to have everything done while others refuse dialysis, long-term ventilator, feeding tube, even antibiotics for infection. I suspect many families talk with their minister, priest, rabbi or other spiritual advisor to help them through times like this. Good luck!

Good morning Beth,

Thank you for your post. You have given me a lot to think about, and yes it is difficult. I will speak with his doctors this week to evaluate our plan of bringing him home.Yes, I have spoken to my pastor. I believe we are doing what my husband would want, it is just all very overwhelming.

I pray, cry, fight and continue with my life but my husband is my primary focus. thank you again and have a wonderful day. God Bless You.

Personally, I feel, that home dialysis is a huge undertaking. I am unsure of the level of involvement you would receive with nursing care etc., but my gut feeling is too say, that this would be a tremendous undertaking, and learning curve for you. I do not mean to discourage you, but rather would encourage you to establish how much responsiblity you can handle, without burning the candle at both ends, if that makes any sense. It seems you have a lot on your plate, and perhaps at the moment it would be best if your husband was under a hospital/clinic care, to allow you some down time, to assist him further when he is at home.

Thank you for feeling comfortable enough to ask, I wish you and your husband well.

Kindest Regards,

Kidney Mom in Canada