working or childcare

[Chilly59]

I wonder how many people here who are in stage 3B are still working at a physical job and do you feel tired? I am 64 and have a lot of family responsibilities. I’m finding I’m very tired the last while. I am a diabetic with neuropathy and perhaps it’s common to feel this way. I have not had any luck with getting to the root of the recent issue with blood in urine. Here in Canada, I can take a year to have a CT scan.

[Bassetmommer NKF Ambassador]

Just to answer your question, everyone is different. I worked up to 63 with stage 4. I had a ton of issues, tired all the time, shortness of breath, and felt like garbage. Turned out it was anemia and very low vit D... and the job that was making me so wiped out. Changed the diet, added Vit D and it really helped. Honestly, it was mostly the job..... I am more physical now and stage 5.

[Jayhawker]

I’m still working. I reached stage V in early Jan of 2017 and kept working. I had severe anemia but was treated for that with EPO injections, that helped a lot. In addition to how we each feel individually I suspect the nature of the job makes a big difference.

The general manager of my post office is in stage V and in dialysis—HD. He’s going through transplant eligibility evaluation now. But he has consistently worked throughout with some modifications to his work schedule to work around dialysis sessions. Some people I met as I attended transplant education sessions (pre-transplant) chsnged jobs do they could continue working. Others were able to continue with their regular job.

The job does need to be one that doesn’t add stress. For me, my job relaxes me…

Jayhawker

[Dana66CKD]

Have been retired since 2012. I was 56 y.o. then. Disabled due to amputation of lower extremities (partial feet) and right hand fingers. Couldn't do floor work, as was unable to stand 8 hr/day.Despite kidneys functioning for next 10 years @ stage 1, the AKI has caused progression to Stage 2-3A. I was very tired much of last year, but started walking, eating PB diet, drinking water as recommended. Have had tough days, as diet & lifestyle is an adjustment, but many good days too. I have heeded the words of many on this forum and am grateful for their knowledge and selflessness to share with all of us.❤😊

[jodaer]

Hi Chilly, lots of good advice above here. I have a different take on the tiredness. I'm tired all the time too. I hover between 3B and 4 CKD. I also am diabetic and have COPD. One of the symptoms of CKD is fatigue. That's lack of energy and nothing to do with needing more sleep or not, or blood levels. When one has a chronic disease, the body needs to work harder to make everything work right or close to right. Of you have more than 1 condition then it must work harder. Also, lots of meds have fatigue as a side effect. By all means get the tests and see what they say but also look at side effects of meds, maybe you can switch them out. Anyway, good luck and let us know how you are doing?

[barbara55109]

I am 60. Stage 4 CKD and several other serious health conditions. I have to work to keep health insurance. No job, no health care, no meds, no test, no transplant list. I am very tired, all the time. In addition to the chronic pain from avascular necrosis in both knees, from iv Prednisone, I now have osteoarthritis in my hands and facet joint deteriation in my lower spine. This is America where we are "free" to die without health care.

[Chilly59 in reply to barbara55109]

it’s just as bad here in Canada people are dying in hospital waiting rooms just not enough doctors for a population that has grown immensely in 2 years. I left work at 60 at my doctors advice. I live alone and when I became free I became childcare for my toddler granddaughter because I was free. It became exhausting driving there to do this and I tried to stop last year but was made to feel terrible now my neuropathy and kidney issues make me really want to scale it back it’s gone a terrible route with family. I’m so tired

[Jayhawker in reply to barbara55109]

There were several transplant patients at my center about your age or a little younger who were on Medicare pre transplant approved for coverage due to stage V CKD. They weren’t working. Is this an option for you?

Admittedly, I know very little about this. Perhaps others will weigh in on this topic.

Jayhawker

[Chilly59 in reply to Jayhawker]

I think that was meant for barbara55109. I have been retired for almost 4 years and I get the Canada Pensions. My responsibility is unpaid as it’s my granddaughter

[barbara55109 in reply to Jayhawker]

It is at least a two year process to get Social Security Disability. You have to stop work to apply. Anyone earning above "substantial gainful activity" of $1,470 per month is not even considered, no matter your health conditions. Because I have an advanced degree and can easily find non-physical work I never tried to apply at 30 when I nearly died. I am a knowledge worker. Now that I'm past 55 they are more flexible with knowledge workers, but it is still harder for us than for people with limited education who previously workers in physically demanding jobs. Once certified disabled, usually it's a two year wait to get Medicare, but Medicare will kick in if you are on ESRD and on dialysis. My eGFR got as low as 7 so I qualified to apply for a transplant. I've been able to get it up to 25 and have maintained in the mid 20s for 3 years. I'm hoping I can get a transplant without dialysis, but only time will tell. If I quit work not only would my family lose our housing, everyone else would lose health insurance as well. Our house and lifestyle are based on our two person income. My husband and our 23 year old is also on my insurance. It is very hard to keep working, but I simply have to. I'm lucky to have a knowledge worker job. So I've gone to work with immense pain, open wounds and more. I have generous sick and vacation time - especially since I use my vacation days for sick days. I've only been forced off payroll once due to a long hospitalization and recovery.

[Jayhawker in reply to barbara55109]

I did get to my transplant without dialysis. My GFR also plummeted to 8 at one point. Like you, I was able to get mine back up to between 18-21. At the time I was transplanted last Nov it was at 16.

As a university professor who teaches in an online graduate program, I have only had to be on campus for required meetings, eg, dept meetings, committee meetings, and the like. Also, my live zoom sessions for class are always in the evenings since my students are teachers who work during the daytime. I’ve been able to get to lab and doc appts during the daytime while meeting my job requirements fairly easily throughout all of this. Clearly I’m fortunate to have the job I’ve got.

In some ways it would have been better for me to be on Medicare part b when I received my transplant rather than my workplace insurance. The coverage for anti-rejection meds post transplant would have been much better. However, since my kidneys didn’t reach the point where I needed dialysis (I.e., my BP remained in check without medication, my electrolytes remained in check without medication, and I experienced no fluid retention, again without medication, I was not yet in need of dialysis. Frankly, I was only taking sodium bicarbonate daily for my kidneys. So what they were doing they were doing without medication support.

Well, it sounds like you have thoroughly explored your options with Medicare. I hope you are able to continue working.

Jayhawker