How Does Home Hemodialysis Influence My Quality of Life?

By Bill Peckham

As I said yesterday I did well while I was on incenter dialysis but at home I am doing better, particularly now that I am doing frequent extended overnight hemodialysis. At the conference I reported that my Quality of Life (QoL) improved every time I increased my dose. Now 18+ years after taking up hemodialysis to manage my stage 5 chronic kidney disease (CKD5) I am enjoying my highest QoL yet. Dialyzing over night gives me both better clinical results and more free time. My already high QoL improved when I switched to extended treatments overnight. 

By improving my clinical experience of dialysis, frequent home hemodialysis has eliminated the post dialysis feeling of being hung over. After incenter dialysis I often felt literally hung over - headache, food doesn't sound good, dry mouth, weariness - I coped with this by going to bed. I'm fortunate to dialyze through the Northwest Kidney Centers which operates each one of their units with shifts starting after 5PM; dialyzing after work meant by the time I got home from dialysis it was time to go to bed.

When my dialysis frequency increased the hangovers went away. In place of nausea I felt hunger. I've gained 14kg since switch from incenter to frequent home hemo. I was under weight incenter, spicy food made me nauseous - mild salsa only. Dialyzing at home has made food more appealing while removing nearly all my dietary restrictions. I can have cereal with milk in the morning; with my nachos I love the hottest salsas. Getting more dialysis at home ended the hangovers and it also cleared the uremic fog.

I could think more clearly. My reading comprehension improved. I could win more consecutive games of Freecell once I started dialyzing frequently at home. These are solvable card puzzles that come with the Windows operating system. While I was incenter it was rare for me to be able to complete five games at a time. Once I was getting more dialysis I became bored with the game as I was able to win again and again. My ability to concentrate had returned.

Then with my latest increase in dose, provided by moving to extended overnight dialysis using the NxStage System One, not only have those areas improved once again but I have my evenings free. I haven't had my evenings free for over 18 years. This blog is due to my having my evenings free. As someone who self dialyzes I am very aware of the time and effort home dialysis requires - extended overnight dialysis requires less time and effort then any other modality I have tried - incenter included. Less effort. Feel better. Live longer. Extended overnight dialysis at home is a positive influence on my Quality of Life.

Comments

[Michael Fraase]

How do you sleep with the needles in your arm? The few times I've nodded off while on in-center dialysis, I've freaked everyone out -- including myself. I can't imagine not rolling over onto the needles or, worse, rolling over the other way and pulling them out.

My info: I use 14-gauge blunts with button-hole, but don't know how long that will last. So far so good after about a year.

[Andy Hoodless]

Hello Sir

I read you sleep with "needles in your arm" so I'm concluding you're having home Haemo not PD. May I ask, do you have a partner? I receive centre based haemodialysis and have been told I cannot have home dialysis as I am single. Hence no partner present should anything go wrong during home treatment.

Respectfully

Andy Hoodless UK

[Bill Peckham]

I live alone. At the conference I was at on Saturday I heard about other programs across the US that provide home hemodialysis to people who are single. At the same time some large programs do not support people who are single.

The most relevant example for you may be Canada where home self dialysis is supported and encouraged. The Toronto example.

[Erich Ditschman]

Bill:

I too am sharing the best QoL since the loss of my kidneys in 2001 now that I'm doing nocturnal home hemodialysis.

Do you find it diffuclt to revert back to three times weekly dialysis when you travel out of country? Or do you find yourself not travel out of country as much as you did because you don't want to have to rely on three times weekly dialysis?

Erich

[Torben Himmelstrup]

We (www.mdbc.dk) have developed a new home hemo night dialysis concept called FlexDialysis www.flexdialysis.dk . It gives you all the flexibility, as it is a new principle on multipass. No installations are needed, small and eayse to carry on when traveling etc. We just need some patients to express a need for this and someone who will manufacture this new and flexible home dialysis mashine. Will you use it? Please comment on this.