We are on dialysis and now what? Some of us are or were holding paying jobs so now that you need this lfe saving support which category would you consider yourself to be in?
- Disabled
- Somewhat disabled
- Significantly disabled
Well I am currently disabled, although there are days I feel good, there are also days when doing the grocery shopping completely wears me out. I also don’t know how I could handle an 8 hour day only to come home and get on dialysis, especially having an 11 year old son and being a single parent. I basically would only have time to work, do dialysis and sleep, not much of a life for me.
Cathy S
self home hemo 9/04
PKD
As a renal social worker and rehab enthusiast who has worked with quite a few dialysis patients who either continued to work or returned to work after stabilizing on dialysis, is it possible to add a category that doesn’t presume that dialysis = disability?
Please don’t think I’m underestimating how hard it is for people on dialysis to work. I know people on dialysis have good and bad days, have workplaces that may not be understanding (sometimes downright discriminatory), and have many things to fit into 24 hours. I also know that unless those on disability have another source of income, they had a hard time emotionally and financially dealing with the change in lifestyle that disability brought.
I’d like to know if home hemodialysis, especially longer and more frequent dialysis, helps more people feel healthier so they can keep working if they’re working already or consider paid or unpaid work or taking classes if they’re not.
I would say functionally disabled (so I guess significantly disabled, I think) would fit me from just before I started dialysis. No energy, always tired, hospital time. I don’t know how I could possibly have worked doing dialysis 3 days per week. Anyway you slice it, it takes up half the day. You’re tired before, and you’re wiped out after. Then, there are the fistulagrams every once in a while, appointments for this or that, transplant evaluation workups and repeats every couple of years, etc. You’re basically on part-time outpatient life support, with significant and unpredictable medical involvement the rest of the time.
In my case, I never had the opportunity to find out if I could continue working, because I worked on term contracts and my project was simply not renewed once my last contract term was over. I had a lot of absences, being one of those who was very affected by being pre-dialysis, and I was hospitalized a couple of times at very inopportune times. To be perfectly honest, thinking back to that last year of working, I don’t think I was able to give my employer full value. I was just too sick most of the time, and my thinking just wasn’t as sharp as it used to be. I think it has something to do with body size. I tried to stay fit as much as possible through exercise, but it was a losing battle. Once I started dialysis, there was no chance of any regular income without going on disability. There really was no other option. It was either that or start finding a place to live on the street or under a bridge somewhere.
And then, once you are on dialysis, as a 50 year old, it’s kind of hard to find a job anyway. They can’t openly discriminate, but who wants to hire someone who is unable to be reliable. I mean, I was a professional of sorts, so, I don’t think flipping burgers or working the cash in a gas station would have been options for me.
Since starting daily hemo at home, I have more energy, I can eat and drink almost whatever I want, etc., but I do have to spend an awful lot of time doing dialysis every day but one. About one third of my nights, I sleep reasonably well, with few machine alarms, but that other third can be a killer. It’s not all rosy, despite the significant advantages. Some nights, you just get many alarms not related to line kinking, and there’s just no obvious reason for them. Can you imagine having to show up at an office in the morning following a long, mostly sleepless night? I’m not sure how full-time employment would fit in with that. It seems to me like life would be nothing but dialysis and work. I’ve already had a good 25 years of productive, loyal and very proactive work behind me, so, while I don’t think society owes me a living, I think I’ve already paid my dues, and paid into that government-run disability plan for years too. It’s not like they are doing me a favour, and it’s not welfare.
Once you are on disability, it’s kind of risky to re-enter the workforce in a permanent way, because health on dialysis is just too variable, in my opinion. This is especially so if you have family responsibilities. You’re feeling good one day, and terrible the next, plus, there always seems to be some complication that arises about something. You never know what medical problems are around the corner, and if you exit that disability system, it can take months or even a year to get back in it should you need it. So the only sure way for a stable, reliable income seems to be disability, even though it necessitates a severe downgrading of lifestyle.
I think younger, otherwise healthy people on daily nocturnal dialysis would be more likely to be able to continue working, and possibly on short daily hemo too. But I wouldn’t say it’s a given. It will vary from one person to the next. I think that to simply proclaim that daily hemodialysis at home will automatically give a person a normal life again is wishful thinking. It may or it may not.
Then there’s the transplant situation if you are listed, as I am. A call might come tomorrow, or 2 years from now. Last time I was called in as a backup recipient 2 years ago, I ended up spending the entire day in the hospital. This is completely unpredictable downtime. Moreover, I’ve seen some transplant recipients have a pretty hard time the first 6 months to a year, with frequent hospital admissions for one thing or another. How does one cope with that and work at the same time? For most, again, disability may be the only option that ensures at least a small but stable income. I know a number of people who proudly and stoically continued in full time jobs after they started dialysis, and who are now on disability or who have taken early retirement. They could handle it for a while, maybe a couple of years, maybe 3 or 4 years, but they just couldn’t sustain it in the long run.
I don’t work, but I do continue daily to struggle with getting back into some kind of shape. I expend a lot of effort taking care of myself. It’s a lot easier now that my hemoglobin is way up since doing daily hemo. And, I keep fairly active with various interests. Having troublesome asthma and respiratory allergies doesn’t help either.
And if all the above isn’t enough, over the past couple of weeks, I had to be at home for my dialysis machine supply delivery (bloodlines, dialyzers), the auxiliary supplies delivery (syringes, gauzes, tapes, heparin, fleet enema, etc.), the concentrates delivery (acid and bicarb jugs), the 3-monthly replacement of my carbon filters, and the 3-month planned maintenance on my machine, plus an unplanned technician visit to replace a pump in the Fresenius. All of these things are independent from the others, and they occur on different days. Except for the machine technicians, none of them are able to give me a specific time, only what day they will come. This happens on a monthly basis. This coming week, I have to dialyze one day at the dialysis centre because they need to do a transonic flow measurement on my fistula. It would be an understanding employer indeed who would accept so many absences on a regular basis.
Well, I have to go, because it’s time to setup my nocturnal treatment again. If I leave it too late, I get too sleepy. I do think this is a good topic for discussion though. I would like to express a more optimistic view, but, my views have been shaped by my own experience with esrd. I was 49 when I started dialysis, so, this is from the point of view of a 50-something who has already raised a family and done many different things in life. If I was 25 or 35, I might look at things differently.
I’m one of those people that does well on dialysis. When I started dialysis in 1990, after two years with a failing transplant, I was unemployed and unmotivated. I tell people that I spent the first three years in a hoping it would rain mood. I went to my treatments three times a week but other than the time I was in the center I did not think about CKD or do much other than distract myself by watching CNN - as if having to dialyze wasn’t depressing enough.
Finally I turned a corner and decided to try working but I found it very hard to go through the interview process, I always felt like I was apologizing for the gap in my employment history and just generally lacking the confidence to have a good interview. After knocking around a bit in temp jobs I took a shift through the Carpenters Union setting up a tradeshow - the 1995 Seattle Boat Show at the now just a memory Seattle Kingdome. I spent eight hours kicking out carpet; I thought I’d never make it through the night, it was a something like a 8pm to 4am shift. But I made it, and I came back. No interviews, no trying to explain anything. If you did the job and the forman wanted you back you got asked back.
So in January of ‘95 I started in the Union - it’s not the job I went to school for but working through the Union has its advantages. I do work for a great company. I was in Portland on Monday and Tuesday and drove down and back with the owner/President of the company. I was so tired coming back that about a hundred and twenty miles out of Seattle we switched seats and she drove the rest of the way back while I slept. I don’t normally get to sleep on the job but the company is very supportive of me in other ways and dialysis patients generally - Triumph will be the company setting up the Kidney Expo this fall and they’ve been donating signage to my kidney center for years.
So I’m with Beth - I want another category. Since going to daily home hemo I feel pretty normal. The people I work with lead busy lives - so do I. The people I work with have ailments and physical limitations - so do I. We all could do more, and we all do what we can. The area I come up short is in personal relationships but my dog and I get along great. My dog gets to go to work with me - another reason I’m happy with the company I work for.
Thanks Mel. I actually had a technician in last week who ended up putting a new pump inside the machine somewhere. So far since then, I haven’t had as many alarms - none at all most nights. They still do want me to have at least a 300 UF rate though. I’ve also doubled the amount of gauze I put under the needles, and I’m having a Transonic done this week to check the flow in my fistula (I have to dialyze in-centre that day).
I’ve noticed that about the blood pump stopped alarm, but it never occurred to me to press start pump first. I’ll try that. Thanks for the tip.
Pierre
Pierre writes:
And if all the above isn’t enough, over the past couple of weeks, I had to be at home for my dialysis machine supply delivery (bloodlines, dialyzers), the auxiliary supplies delivery (syringes, gauzes, tapes, heparin, fleet enema, etc.), the concentrates delivery (acid and bicarb jugs), the 3-monthly replacement of my carbon filters, and the 3-month planned maintenance on my machine, plus an unplanned technician visit to replace a pump in the Fresenius. All of these things are independent from the others, and they occur on different days. Except for the machine technicians, none of them are able to give me a specific time, only what day they will come. This happens on a monthly basis.
Is this typical of most home programs that as many as 6+ days a month must be taken up waiting for supplies/repairs?
Not all, I get deliveries once a month except for needles and epo (when I need it, haven’t for months and months) which I pick up at my center when I have my monthly appointment.
When you need a repair you need a repair, but I haven’t had a technician to my house in probably 5 months, in fact I was wondering about needing a routine maintenence service and will be calling them this week.
I would say at most I might have to be home 3-5 times a quarter, and I’m lucky my delivery is usually here by 8:30 am, and they bring it into the house and store it for me, per my instructions, right in the closet.
The example I gave was a worse case scenario, which happened to me this past month, and a month in which the every 3-months items happened to coincide - but these things do happen from time to time, and they are somewhat unpredictable.
Normally, I get 3 deliveries per month: machine supplies (dialyzers, bloodlines, buttonholes, etc.) from Fresenius, acid and bicarb concentrates from Baxter (these are 5 and 8 litre jugs, in boxes of 4 and 2 respectively - more storage space needed, but I don’t have to mix anything), and general supplies from the hospital (gauzes, syringes, syringe needles, tapes, etc.). If I had more storage room at home, I could get these every 2 months instead of every month. The hospital (my dialysis unit is part of a hospital) is currently working on consolidating the 3 deliveries into a single one to make it simpler for patients. I don’t have to be home personally to receive these, but in my case there is nobody else who can do it.
Biolabs comes every 3 months to replace the carbon tank, and the machine techs come every 3 months for the planned maintenance.
In addition to the above, there is the monthly clinic appointment, and a trip to the renal pharmacy at the hospital every 3 months or so for Eprex and Venofer (I usually go at the same time as my clinic appointment, except the time someone accidentally threw away my Eprex while cleaning out the fridge, thinking it was an old bag lunch 
).
I mention these things because it’s easy to become pollyannish about home dialysis. It’s a better treatment, not a cure, and does come with significant strings attached. I think a person should go into it aware of those things.
Pierre