Dialysis rant- You have been warned!

[kitkatz]

 
I am so sick of all of this crap right now.  A change to my dialysis schedule just screws with my life.  Appointments here and there with all these medical people.  No answers for why I am gaining weight when I have lowered my calorie intake and upped my physical activity.  Just pats on the back and the same damn old advice, keep at it, keep at it, you can do it.  Well what if I can't?  What if there is something physical that no one will even look for because I am such a long term dialysis patient?  Everything is either blamed on my weight or blamed on dialysis or some such complication of dialysis.  I cannot get a medical doctor to say hey wait a minute, what the heck is going on with you?  The transplant team wants me to jump through so many hoops.  I now have an apap machine that is hard to sleep with at night.  The masks are not comfortable and i need to call Kaiser about it.  UCLA wants this and that.  Everyone is watch the weight.  Well hell's bell, I am and it is going up.  Ever since my BP dropped, my weight goes up. 
I went to dialysis today 10-4.  I hate this schedule.  Should be better in a week because I then go MWF 2pm to 8 or 9pm.  I am sure tears will be involved sometime this week.  I see pulmonary people at UCLA on Monday, dialysis Tuesday 10-5, Wednesday nutrition class 6pm Kaiser, dialysis Thursday 10-5,  Friday pulmonary function test at Ontario Kaiser, Saturday dialysis 10-5. 

I so want a normal life.  I have never had one so this is all just ... 

[Michael Murphy]

Kitkatz, first thing is to make a appointment with a doctor who specializes in diets,  have then work with you, every one thinks eat less exercise more and you will lose weight.  Not so the body is a system designed to keep you alive, if it thinks you are in a famine situation it will do all it can to keep on weight. If it was easy everyone would be thin.  In my experience a weekend of normal eating would help break that cycle.  A dietician or a doctor would know.  Also any change is stressful and you just had two major changes, diet and schedule.  The schedule change should become easier as you adjust and the center helps find a time more to your liking.  One of the problems of ESRD I have found impacts me is the never ending medical appointments that make every day a challenge.  My advise is to do some me activity you like as often as the medical appointments so the good time  balances the bad. And finally remember that your work on this site has filled the world with thousands of people who like and admire you and are pulling for you.  I believe in Karma do good and it will come back to you  I will try to do good for someone and you can have my Karma points. Please be well, we need you.

[willowtreewren]

Rant away. You deserve to! I wish there were something I could do to help. 

Sending cyber hugs....

 

Aleta

[Charlie B53]

In the dozen years I have been using my CPAP, two times I had started getting tired again.  I  mean TIRED.  About like I was prior to my by-pass surgery, tired.  I don't remember how I thought of it, but I took my CPAP back in to be tested.  Failed miserably.  The Tech was surprised that I had worn out the machine as most people do not use them.  OK, new machine.  A number of years later same story.  Tired, finally had the unit tested, worn out again.   Now using my THIRD machine and feeling much better.

Get your macjhine tested.  If it is fine at least you can rule that out.  But if it is many years and well used, it may be part of your problem.

[Blake nighsonger]

I know just what your talking about. Rant on sister!

[cattlekid]

I agree with CharlieB.  My husband has been through three CPAP machines, I have been through two.  We are faithful users.  Also, if your weight is changing, your pressure settings may need changing as well.  My husband's pressure went down because he had gastric bypass and lost 90 lbs.  Mine went up because prednisone   

[kristina]

Hello kitkatz
I am very sorry and I do hope things get better soon for you.
Best wishes from Kristina.

P.S Could it be that all your recent medical check-ups put your body into a turmoil or shock and because of it
your body-metabolism has become a little slow right now and therefore your own food-process has slowed down considerably as a result?
... I mention this because when I first started with my dialysis-treatment my body went into some sort of shock
and so did my food-process, despite my regular walks around the block plus my regular very small portions of my vegetarian diet.
But at the time my metabolism became extremely slow and my body seemed to completely "stand still"
because of the shock my body went through when I started with my dialysis-treatment
and it is only now - over one year later - that my body seems to have "gone back to normal" again ...
Best wishes again from Kristina.

[justagirl2325]

I watch my husband go through very similar things, everything just gets blamed on dialysis or diabetes (and I guess that's true) but never what can he do to help make his problems better, there's never any resolution or solutions.

He's currently jumping through hoops in hope of a transplant too.  So I feel for you.

[Rerun]

There is this guy on my nocturnal shift who has a Cpap machine and I KNOW it is not fitting him right.  Well, his face is quite puffy, so maybe that is it but all night HOOONNNNkkkkkk   silence   HOOOONNNNkkkkkk  silence   HOOOONNNNkkkkkk.  I say in a loud voice  Will Someone Tell HIM his MASK is NOT Fitting correctly!!!    HOOONNNNNkkkkk

Good thing I'm tied down.        

[kickingandscreaming]

Will Someone Tell HIM his MASK is NOT Fitting correctly!!!    HOOONNNNNkkkkk

Why don't YOU tell him since you are clearly noticing it.  It would be service to him (and to everyone else who wants to sleep).

[Charlie B53]

My second CPAP machine made noise.  But I slept through it.  This third one is quiet.  Same machine as the Wife has.  We sleep in separate rooms long before I ever got my first CPAP.  Not sure which bothered her more, my snoring, or the apnea.   She tells me that many times she would wake up scared to death that I was dead, it ws so quiet, I wasn't breathing.  Finally I would gasp a huge breathe and she'd almost wet herself.   One night she decided she had heard enough, picked up her pillow and moved into the other room.

Now she has her own machine and once in a while while I am up during the night I can her the air 'rush' from hers, and know her mask has moved and has a massive air leak.   So I go in and wake her up, tell her to put her mask on straight.  All quiet again.

Rerun, though you may be tied down with one arm, you have the other one free to start throwing things.   Take a bag of rocks in with you!  Apples, oranges, dozen eggs?  A few water balloons?   LOL, We could be giving Bob ideas for his next 'chapter'.

[Michael Murphy]

Kitkatz while not on nocturnal I have a 6:00 AM tee time.  Since I am now on 4 and a half hours and it's so early I prefer to sleep for a couple of hours it seems to make my sessions go faster.  But I can't sleep over the guy in the next chairs snoring unless I put on my headset and put on a mild playlist somI can't here anything but the music, I sleep like a rock.  The only problem this causes if one of the staff needs me awake they shake my arm, since my fistula arm is closes to the machine that's the one they grab. And since I try not to move that arm to avoid infiltration when waking I raise it up and it scares the hell out of me.

[kitkatz]

My CPAP/APAP machine is spanking brand new.  I picked it up April 1.  I need a new mask.  The two I have hurt my nose and face.

[Vt Big Rig]

I have had a CPAP for over a year. My wife actually says she kind of likes the "white noise". If it slips a little and "leaks" she wakes me up to adjust it.

After 40 years she still stays in the same bed. That is success in my book.

But I did not know they could "wear out."

[Charlie B53]

All things mechanical will eventually 'wear'.  Any compressor or air pump will eventually wear and lose tolerance making the pumping efficiency fail to maintain rated pressure and flow rate.  When this begins to happen with a CPAP the user loses sleep quality as insufficient air pressure allows us to revert to the apnea we have been using the machine to prevent.  We begin to feel that old tiredness we used to have and this may occur for quite some time before we realize that we are tired all the time again and something must be wrong.   Often shrug it off as aging.   It is aging, of the machine.   When you develop that tiredness again, take your CPAP in to be tested.

[kitkatz]

The perfect description for how I feel tonight after daytime dialysis.  I feel like 2 car wreck in the same garage.    I ache from head to toe tonight. 

[PrimeTimer]

I hope you feel better and are able to get some rest. So sorry this is happening to you.

[Tío Riñon]

If the CPAP machine isn't working, you might want to look into an appliance.  It is similar to the mouthguard used by football players.  I have sleep apnea, but couldn't tolerate the CPAP--especially while doing PD.  There were too many tubes and plugs with which to contend, not to mention the mask and suction.

I have gone to a dental specialist and he took a casting of my mouth and designed a piece for me.  We're still working out the kinks (a follow up sleep study), but I much prefer it to the CPAP.  It is smaller and more portable.  Everything I need can fit in a dentures case.

Good luck with whatever solution you choose!

[kitkatz]

I have a mouth appliance, UCLA wanted me on the CPAP machine for the pulmonary hypertension I have.  The appliance was treating the apnea right on the edge of okay.

[gothiclovemonkey]

 
im sorry you are dealing with this crap
im sorry we all are, in some form...
its taken me a few yeras to find a doc to listen to me! and at least attempt to figure things out. I get the same, its always because of dialysis, or because im obese.
One thing to remember, muscle weighs more than fat, so if your activities could cause muscle mass, it could explain the gain. also the low bp.  I have had the same issue, not sure if that is the case or not
<3

[Mr Sparky]

I am so sick of all of this crap right now.  A change to my dialysis schedule just screws with my life.  Appointments here and there with all these medical people.  No answers for why I am gaining weight when I have lowered my calorie intake and upped my physical activity.  Just pats on the back and the same damn old advice, keep at it, keep at it, you can do it.  Well what if I can't?  What if there is something physical that no one will even look for because I am such a long term dialysis patient?  Everything is either blamed on my weight or blamed on dialysis or some such complication of dialysis.  I cannot get a medical doctor to say hey wait a minute, what the heck is going on with you?  The transplant team wants me to jump through so many hoops.  I now have an apap machine that is hard to sleep with at night.  The masks are not comfortable and i need to call Kaiser about it.  UCLA wants this and that.  Everyone is watch the weight.  Well hell's bell, I am and it is going up.  Ever since my BP dropped, my weight goes up. 
I went to dialysis today 10-4.  I hate this schedule.  Should be better in a week because I then go MWF 2pm to 8 or 9pm.  I am sure tears will be involved sometime this week.  I see pulmonary people at UCLA on Monday, dialysis Tuesday 10-5, Wednesday nutrition class 6pm Kaiser, dialysis Thursday 10-5,  Friday pulmonary function test at Ontario Kaiser, Saturday dialysis 10-5. 

I so want a normal life.  I have never had one so this is all just ... 

Yeah, the dialysis schedule is ridiculous. It's like a damn sponge; sucks up everything!