Anyone else just freakin' tired all the time?

[Mom3]

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?

Kitkatz, do you find your exhaustion has increased a lot since your spouse became disabled? It may at least partially be the added stress on top of the dialysis?

I find working hard sometimes. I marvel that you are able to do it!!

Mom 3

[kitkatz]

Oh Lordy! You have no idea how tired I became with all of the hubby stuff added to it.  Exhaustion city!  It has gotten better, but is still there a lot.  I just keep going ya know like that Energizer Bunny.

[BigSky]

One of the most common complaints of dialysis patients is being tired, more commonly from post dialysis fatigue.  Most if not all doctors and the medical community fail to address the issue.

One thing that can help is to increase your endurance.  Yes that means exercise.

One other thing I know of that is said to help is deca durabolin.  Deca was the main choice for treatment of anemia before epo came out. 

Anyway a study was done in 99 that showed positive results from the use of deca in the areas of post dialysis fatigue.  However trying to get a doctor to actually prescribe an anabolic will more likely than not go over like a lead balloon.  Doctors hear the word "steroid" and freak.

Find the news release on the study at:

http://pub.ucsf.edu/newsservices/releases/2004010773/

[Joe Paul]

I just get so tired of not being able to do all the things i did before this disease. Thats both physical and mental issues. Was an auto mechanic all them years, and now its a chore just to change a tire. Walking is even a chore for me these days, as my back operation seems to be failing with the calcium/ phosphorus issues we all face. Call me "crunchy"

[Black]

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

Debilitating fatigue is one of the major symptoms of PKD, even for some patients with almost normal blood values.  There are different types of PKD.  PKD1 and PKD2 have been identified for a while -- still working on gene location of 3 and 4 -- the fatigue may be a characteristic of the particular type you have.  Currently there is not much to be gained by genetic testing to identify which type you have but in the future that may be part of the diagnostics and treatments.

My husband has days when he spends most of his time in bed and sleeps an hour at a time around the clock.  After a couple of days he rallies and has a few good days when takes a good nap or two but stays active the rest of the day.  That cycle started many, many months ago when his kidney function was still well above 50%, but it has gotten increasingly worse as his function has declined -- the span of bad days has gotten longer and the good days fewer.

You should also be sure you're not anemic - check ferritin(sp?) levels as well as hemoglobin, monitor your white blood cell count closely to check for cyst infections which may give no other evidence of their presence other than the elevated count, and be sure you are well informed on the latest testing and treatment for hypothyroidism.

Being soooo tired all of the time is almost as debilitating as chronic pain and PKD patients often have both.

BTW, the difference in the progression on you and your son may be due to a genetic mutation or a triggering mechanism which has affected the earlier manifestation and decline.  My husband's son at age 33 is now at the level of function my husband was at age 60.  Sometime it happens the other way and a parent dies young and the child lives to be on slightly affected in their 70s.  So far the fatigue also seems to be unpredictable and often appears to be unrelated to the decline in kidney function.

Be sure you emphasize the fatigue EVERY TIME you see the Neph.  I think those notes in my husband's records were partly responsible for him getting approved for disability less than two months after he applied.

Lorelle

[Mom3]

That is so helpful! I have wondered if it was all "in my head" or just depression or something! I am going beck to school next week but now I won't feel so guilty if I lie down on the couch after work!! Last year I tried to work a second job and I really thought it might kill me. I was so exhausted I honestly wasn't safe to drive home at times.

I do mention my fatigue but my doctors have never taken it at all seriously. and I'll just hope these new doctors will do so.

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!

I still WANT to work. Takes my mind off my worries and grief about my son (who has only ONE cyst in his kidneys!) and adds so much meaning to my life.

I'm sure Katharine feels the same about her job! Do you have help in the classroom, Katharine? An aide, assistant, associate or co-teacher? If not, is that a possibility?

Mom3

[BigSky]

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

The thing is to apply sooner than later.  In most cases you will be turned down by Social Security the first time you apply.  They pretty much do this to everyone as a way to delay the process in hopes the person will not reapply.  If denied reapply and that is usually when it will go through.  I have even heard of people already on dialysis that were denied the first time they applied. 

Anyway even if denied the first time and approved at a later date, last I heard was that they are supposed to back pay a portion from the very first day you applied.

If people cannot qualify for Social Security because of limited work history there is also the SSI program that will pay in the event of disability when the person has no work history or not enough credits to qualify for disability from Social Security.

[Mom3]

Thanks Big Sky. My son is on SSI. The social workers told him it was automatic to be approved AFTER dialysis (but probably only if one is not working at all...) He was very disabled before he went on dialysis. Soaring blood pressures that couldn't be controlled, problems walking etc and he was STILL turned down just a couple of months before dialysis.

Apparently being young makes it a lot harder!! A reason to be glad I'm no longer young??

Mom 3

[angieskidney]

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!

Thank you! That is really appreciated! They asked me how long I can stand for before sitting and I didn't know what to tell them so I said an hour. I figure that way I would be covering my butt! Hopefully it works out! I will keep you all updated on this Thanks for caring 

[Black]

... So federal disability is an option BEFORE dialysis? ... Mom3

Yes, but it is extremely difficult for anyone w/ PKD to qualify until kidney failure actually starts and their creatinine is above 4.0, and even then some of the decision makers are reluctant to approve the claim and you have to appeal their rulings or reapply.  As BigSky said -- the sooner the better.  When it is finally approved, depending on circumstances, it may pay retroactive to when you first applied.

That's one of the main reasons why it is so important that ALL of your symptoms be noted at every doctor visit.  Patients who do not complain about the PKD fatigue, pain, insomnia, nausea, etc., at every visit will not have the documentation required for claim approval.  Also, if you put off your doctor visits for several months, and do not have frequent bloodwork it's harder to get approval.  My husband went at least once every three months, and then once a month, with blood drawn for complete testing before every visit.

He applied for disability at the end of January and his first check came in March.  I give the Neph a lot of the credit -- he made detailed notes.  (BTW, I told him he better make complete notes, because if Mike was turned down for disability when he got too sick and too tired to work, I was going to blame him. )

The last time he pushed himself and tried to work he had nausea, vomiting and diarrhea for almost two days.  He was trying to work out of town and I was soooo worried about him!  Mike hates not working and is hoping the NxStage will allow him to go back to work but he knows he can't work now -- he stays much too tired.  He has to push himself to do much other than his cooking and laundry.  We are so grateful for the disability checks -- not much $$$ but a huge help.  My business is small and was never intended to be our sole support.  With the disability checks we can make it, barring unforeseen problems, until he gets a NxStage machine and (we hope) gets back to work.

[Mom3]

You first directed me to this site and you have given me some great information Mrs. Black... I am not yet ready to go the disability route but is good to know it is out there, even prior to dialysis. 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!!)

[kitkatz]

Mom3
Since I am a special ed teacher I have an aide in my classroom.  She an I have worked together going on eight years now.  She is WONDERFUL.   Let me tell you how to get what you need from your school district while you are working.

1. Get a letter from the social worker at your clinic describing ESRD and dialysis.  Have them write that it is a debilitating disease that does not get better only worsens.
2. Have the doctor write you a diagnosis and a prognosis and a treatment plan for the school district to have on file.
3. Schedule a meeting with your principal and a union representative.  Be sure to tell the union rep what you are going to talk about at the meeting.
4. Think of 2 or 3 things you want from the district that will help you in the classroom
     a. an aide while kids are in the room with you.
     b. Frequent breaks, where another teacher will relieve you if needed.
     c. Longer lunch or break time.
     d. Or what ever you feel you want from them that will help you.
5. Then go talk to the principal of your site and ask for what you need.
6. If this does not get you anywhere, call the district office, Human Resources and tell them that you are asking for a 504 plan to be implemented at your school site.  They will jump pretty high after that request. Ask for what you want again.
7.  Go to the 504 meeting with your documents in hand with a union rep with you.  The 504 plan is accommodations made to your work site or schedule  because you have a handicapping condition.

     Now I know about this 504 plan in the United States. It is a law here. Your work has to give you accommodations if you need them.  I have NEVER had to go this far.  Whatever I have needed the school site and district have given me.  I have a six hour aide. She was five hours the first few years, then I asked for an extra hour because I have kids six hours a day and I was getting exhausted running the room just one hour by myself.  I just have to work with them on getting a substitute aide in when my aide is out sick. 
     I love my school district.  They have rocked for me these last eight years. I have worked for them for ten years now!

Katherine

[Black]

... 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.

[Panda_9]

Ive given up saying Im tired. Last time I saw the doctor (not my usual one), he didnt even acknowledge it when I said Ive been really tired 

[Mom3]

My condition was first diagnosed from the enlargement in my liver. My gynecologist thought I had liver cancer and sent me for an ultra sound. When they found a LOT of liver cysts they said I needed to be checked for kidney cysts--and I ended up at the nephrologist.

I am carrying at least that much extra weight and the wt alone is somewhat of a handicapping condition! Bad for balance, too.

My school is a state agency and I am an "associate teacher" so I am not as valued as you probably are Katharine. (My professional career was in human services and I essentially gave it up to care for my son who became sick in the 7th grade. Still worked but needed no more than 40 hour weeks and knew I'd have absences so I had to get out of situations where I was virtually indispensable. Now if I'm out they can get someone to sub or in some cases actually do without me for a while. My work is not happy about working with me at all and I feel pretty insecure. We do have a teacher at our school who has had a transplant and they are really good to him. He is very valued because it is hard to get deaf ed/special ed teachers as you know.) It's a new year and we'll see how it goes!!

I'm really glad your school it doing what they should for you. Hopefully your educator's association backs you, too.

Sounds like they aren't teaching you restraint and all that, the way they did me. I went through the training but I was honest and said it will have to be a truly grave emergency and no other options of any kind before I try to use this stuff at this point in my life. Incidentally the transplanted teacher and a teacher on chemo were in my class...Not too realistic?

Wishing you the best with getting the NX stage. I believe that once dialysis is started things will look up, Mr and Mrs Black. I certainly hope so!

Hoping your year goes well. I'd value a job and employer who worked with me that way, too, Katharine. Work is a good medicine when it is going well...

Mom 3  (My computer just must have moods too. Spell ck is working again.)

[MelissaJean]

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. 

[angieskidney]

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. 

Wow only 17 days? And that is the Average Americans? Wow!

[kitkatz]

So, since I am not an average American I must not be awake those seventeen days. LOL  Just great!  Here I am thinking I am awake and at work and I am actually sleeping in.  I simply must notify someone about this lack of awakening!   

I have another friend in the same school district who is on dialysis and the district is acting like they want to get rid of her.  She is a teacher's aide and has been with the district since she started working at 18 years of age. She is 43 now.  Christ! You would think they would help a long term employee out. I am helping her get through the mess.

Yes I am a valued employee, since no one else would take my job!   They have been trying to hire an RSP teacher for our site for two years now.  Almost impossible to get people with any experience at all.

Katherine

[Panda_9]

... 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.

Your neph should be able to order the scans and tests. I definitely would be getting them done asap. While nephs specialise in kidneys, they do have a general knowledge of other areas, some more than others. If they suspect something is wrong they can get these tests done and refer you to the appropriate specialist. That is how it works here.

[Mom3]

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

[angieskidney]

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

Ya I could not have kept my old 12-hr shift job that I had for 9 years. I also could not have kept my Hot Deli 8hr shift job at the store I am still at. I am just glad they finally transferred me to a new department. I hope I can keep up. Just 5hr shifts 3 days a week. But I have been out of work for a year. I hope it doesn't tire me out. I still don't know my new position job description though.

When any of you are teaching how many hours do you work in a day?

[kitkatz]

I am at school from 7a.m. till 2p.m.  when I am teaching.  Sometimes on TTh I am there until 3p.m.

[angieskidney]

I am at school from 7a.m. till 2p.m.  when I am teaching.  Sometimes on TTh I am there until 3p.m.

wow that is an 8 hr day! That would tire me out

[kitkatz]

Sure enough!

[Panda_9]

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

OMG how can a liver that enlarged not be a problem!!! What are your LFTs like?