My husband has just had a fistula on the forearm done. He is not on dialysis yet but will be soon. We really wanted to do PD dialysis overnight but was told that since my husband was a “big guy” he didn’t qualify. My father passed in 2002, but was on hemodialysis from approx 1980 to 1991 and again from 2001 to 2002. My husband wants to do hemodialysis from home, but I am nervous about it. I think he is making an uninformed decision because he doesn’t want to be inconvenienced by going to a clinic. I have read some of your posts and understand that you are a proponent for home dialysis. I am not a fan of needles and am afraid of having them inserted incorrectly. I feel as if he is making a decision without knowing or understanding what dialysis entails. I feel as if his Dr is making it sound as if it is going to be so simple and I don’t feel that way. I wasn’t happy with the placement of the fistula (center of the arm). My father’s was down at his wrist. I was told that this is where fistula’s are placed now. I want to support my husband. This is his body and a huge change for the both of us. I just don’t want him thinking that hemodialysis is going to be easy to do and not take it seriously. I have asked him to take a tour of a local clinic so he can see what dialysis is like before he makes a final decision, but the Dr’s have him convinced that doing dialysis from home is going to be a piece of cake. I know that dialysis has changed in the 12 years since I was exposed to it, but my husband is only 39 and I want him to make an informed decision based on reality, not fantasy. His fantasy is doing home dialysis is going to be so easy and not dangerous at all. I am really scared about this next stage of our life.
Dear Stella
Sory for being slow to reply - but I have been away, talking at a conference in New Zealand.
To try to answer some of the issues you have raised …
The first is the advised unsuitability of your husband for PD. Although you don’t give details, you say that he is a big guy and that PD has been seen as unsuitable on account of his size. Big people often present both technical difficulties for the surgical placement of a well- functioning Tenckhoff catheter as well as in terms of the efficiency and efficacy of the dialysis. PD simply doesn’t have the same pull-power for solutes or fluid and even if a catheter can be satisfactorily placed, PD can simply fail to remove enough accumulated toxins and/or fluid to provide adequate clearance. It is thus likely that this advice has been given on good grounds and with appropriate thought and consideration. I find myself needing to tell patients this, myself, from time to time.
Next, while you clearly are fearful of bringing dialysis into the home … and I fully understand that fear and uncertainty - it is a feeling all patients who ‘take dialysis home’ have and it is certainly something all family members fear too … it seems that at least your husband is keen to dialyse at home. To be honest, if home haemodialysis can be supported by your local dialysis team, it DOES offer the best outcome, the very best dialysis, and the very best general health, well-being and capacity for work and/or life engagement of any currently available dialysis modality. If his doctor is suggesting it, and making it sound simple, it reassures me on two counts that his advice is sound: clearly the doctor (and presumably also his clinic team) are familiar and comfortable with home haemodialysis = a HUGE plus; secondly, if so, and the team is a home-experienced team, the doctor would not be suggesting it if he didn’t think your husband -and you - are suited to it too.*
Scary … yes - it is, or can be, at first … but if you want the very best for your husband in terms of health, lifestyle and longevity, home delivers this - in spades - when compared to any option in centre-based care. A home experienced training and support team - as I am suspecting your husbands team is - wont send him home till he is safely and fully trained. This means training to manage and handle any of the technical issues that might arise - eg: power failures or machine problems etc.*
But, as regards any of the complications of dialysis that might threaten him … that is the whole point of home dialysis: by daily sing at home, treatment can be (1) slowed and (2) lengthened and (3) done more often … each and all three components of which make dialysis gentler, less stressful on the body, more efficient, and less likely to cause any medical complications.
Dialysis is never quite ‘a piece of cake’ - for anyone - but home haemodialysis is not complex, it is not hard once you have been trained, and it’s dangers are way, way less than those of facility care.
Imagine climbing into the drivers seat of a car - for the very first time - having never ever seen a car before. A round thing in front of you, dials, levers, knobs, buttons and lights and odd levers in the floor. Yet you were taught to drive it, drive it well, and, in the main, drive it safely.*
How? … Well, you were taught how. It is second nature now.
Learning to drive a dialysis machine is the same … easy when you know how and have been taught … and likely much safer than a car!
If your husband …
i) wants home dialysis … you say he does
ii) is deemed suited by his treating team … you say they say he is
… then to get the best outcomes for him, I believe that that is the way forward.
If you are scared - and is natural to be, and OK to be … who wouldn’t be - then talk to his managing team about your fears. Tell them of your anxieties, and work with them to allay - as best as possible - your fears.*
But … let him do it. It is his life and his choice in the end, and is his path to the best dialysis outcome he can get. Let him tread the path, even if the way seems fraught with dangers.*
It is hard to reassure, but truly, most of the dangers you fear are more in your mind than in reality - perhaps coloured by your experiences with your father in a different time and with - in those days - inferior systems.
Stella, I’d like to also suggest that you consider getting the book that Dr. Agar and I wrote–for folks JUST like you and your husband–called Help, I Need Dialysis!. (http://www.homedialysis.org. It may help you with the fear, and it will give you ALL of the reasons why it makes sense for him to go home if at all possible. He should put in his OWN needles–this is not something you should do. Home treatment is not so much about convenience; it’s about having the energy to keep a job, have a sex life, travel; having a better chance of staying out of the hospital and living longer; having cleaner blood and a far lower chance of long-term side effects like bone, nerve, and joint damage. Home is the way to go.
I also invite you to join our active Facebook group–which also has plenty of care partners. https://www.facebook.com/groups/122326728212/