I'm not even on dialysis yet and I get incredibly tired. I have wondered if it the PKD, the organ weight, the stress, the sleep loss--or perhaps worse-- just being over 50? ...Mom 3
So federal disability is an option BEFORE dialysis? I know anyone can get it in the US after dialysis starts but really thought it was not an option to even consider until that point. Thought I'd have to settle for a pittance from the state, if I got anything!Mom3
Now remember, Angie, the first few days will be exhausting. You will wonder why the hell are you so tired after only a few hours work and why are you doing this. Just get up and go to work, then go to dialysis. Relax and enjoy what you are doing. Remember to rest if you get too tired. I have to sit down sometimes when I am teaching and teach from a chair. Remember to eat breakfast so you remain strong for work. Start slowly and build up to full power after a few weeks. Enjoy yourself!
... So federal disability is an option BEFORE dialysis? ... Mom3
... Does your husband have PLD and an extremely enlarged liver also? I think that this liver weight is more of a problem than the nephrologists give credit to. After all the liver part is not really their area, right?Hope it goes well for your spouse on the Nx Stage machine and he will be able to do more and that Angie and Katharine do well on their jobs! Working when you have a chronic disease is truly hard.Mom3 (I re-read but that spell ck has gone out on me still again!!)
I have been tired all my life... first from Cystic Fibrosis, then diabetes, and now kidney failure. I was feeling really bummed out when I read in my Health Magazine that on average Americans feel "awake" only 17 days a year. That made me feel a lot better... maybe I am not so abnormal... I feel awake at least 17.
Quote from: Mom3 on July 30, 2006, 02:07:40 PM... Does your husband have PLD and an extremely enlarged liver also? I think that this liver weight is more of a problem than the nephrologists give credit to. After all the liver part is not really their area, right?Hope it goes well for your spouse on the Nx Stage machine and he will be able to do more and that Angie and Katharine do well on their jobs! Working when you have a chronic disease is truly hard.Mom3 (I re-read but that spell ck has gone out on me still again!!)Thanks for the good wishes! Were holding our breath and hoping that getting the NxStage is not difficult. I'll be calling the clinic in Atlanta again on Tues or Wed to confirm that he is still a go. I'm waiting until after his next Neph appointment on Tues, when we get results of his 24 hour urine collection and last blood draw so they can update his file in Atlanta.As far as his liver, we don't know. He may have all of the PKD effects - brain aneurysm, liver cysts, damaged heart valves and diverticulitis -- since we don't have insurance we're waiting until Medicare will pay for all of the testing. You're right about the Nephs not being that interested in the other disorders. His GP did suggest a brain scan once and the Neph did ask if he'd had one done or wanted one done -- but nothing else and nothing since that initial visit. From the expansion of his waistline I suspect both kidneys and his liver are severely enlarged. The rest of his body is not that fat, though he does have edema in his extremeties. He weighed between 205 and 220 for many years; he currently weighs about 270. I suspect the cysts and excess fluid account for almost 50 pounds of the gain. Carrying around that much excess weight has to be tiring.Have you ever had your liver, brain, heart, intestines checked? I would think the more organs involved the worse the symptoms would be, especially the fatigue.
I just hate that DaVita site advice to hold onto your job as if all jobs were created equal and it was just a simple choice!! Working with a chronic illness is always hard. Sometimes its impossible! Mom 3
I am at school from 7a.m. till 2p.m. when I am teaching. Sometimes on TTh I am there until 3p.m.
I had the brain scan after a concussion--no aneurysms.The specialist I was referred to for my liver, an elderly gastro enterologist, didn't know what PKD WAS and I had to explain it to him...! Basically I was told over and over that my 40 lbs of liver was no big deal since it was still functioning and I shouldn't worry about it.Pain, balance problems, pressure on the spleen that put me in the hospital for a week, a gall stone that would be very complicated to operate on (I take actigall and it works really well by the way!) but it's no big deal.My research on the internet has said for those of us who have extreme encystation of the liver it CAN BE a big deal, a really big deal ending up in surgery or liver dialysis, but locally so far the doctors just look at the labs and ignore the liver. Perhaps you'll have better luck with your liver, Mr. Black. I do hope so...My job is a glorified aide, Katharine. I am highly qualified under NCLB and ought to be valued, but I'm less valued than a certified teacher. The experience one has with trying to work and how one is treated on the job has a lot to do with what job one holds. And how you are accommodated--IF you are accommodated at all--can have everything to do with how exhausted you are and whether you can cope with holding the job. I just hate that DaVita site advice to hold onto your job as if all jobs were created equal and it was just a simple choice!! Working with a chronic illness is always hard. Sometimes its impossible! Mom 3