My quality of life sucks

[kickingandscreaming]

I have no energy, feel like a zombie: flacid and collapsed. My Hgb is good so that's not the explanation.  My clearance and bloodwork are good so that isn't it either.  It's hard to push through when I have so little ooomph.  I wake up in the morning and can't mobilize.  I read and then sometimes fall asleep again.  This is not a life worth living, i'm afraid.

[Michael Murphy]

Please take this complaint to your nephrologist either they are pulling too mush fluid, or your lab work may be out of wack. The exhaustion should be fixable.  I recently was suffering from Congestive Heart Failure, could not sleep reclining or laying down, kept telling my doctors no help.  Told doctors that I was stopping dialysis since I was so miserable.  Mentioned my problem to a urgent care doctor who pointed out I was a dialysis patient so I could have more fluid pulled and the problem should go away.  He was right it did.  Now I am in a running battle with nephrologist about pulling 3 to 4 kilos every session.  They say it may cause another heart attack, I keep pointing out if I start CHF again I will stop dialysis and die anyway. 

[cassandra]

I have no energy, feel like a zombie: flacid and collapsed. My Hgb is good so that's not the explanation.  My clearance and bloodwork are good so that isn't it either.  It's hard to push through when I have so little ooomph.  I wake up in the morning and can't mobilize.  I read and then sometimes fall asleep again.  This is not a life worth living, i'm afraid.

Hi KaS when I feel like that it's usually my dry weight being too low. Cramps etc aren't always presenting. Ask if you can increase your weight with 200 grams orso and see what happens (tell 'them' that you feel so crap you nearly didn't come in today, maybe try an increase?   .  ) Or just do it, I would increase till you feel better, or are obviously retaining fluid. My dry weight fluctuates between 61 and 64 kilos.

Good luck my darling, I hope you feel your chirpy self soon.

Lots of love, Cas

[kickingandscreaming]

But I do PD and my fluid control is one of the best things I do.  No swollen ankles at all, very steady weight and very good BP with an almost inconsequential dose of Metoprolal (12.5mg daily).  I don't think I'm dry, just the way I should be (from a fluid perspective). 

But I do have several heart issues: heart block (occasional very low pulse that causes fainting and is now regulated by a pacemaker; Atrial fibrillation, and a leaky mitral valve.)

[cassandra]

Mmmmm (thinking) you could still be dry or maybe the pacemaker needs adjustung? What bags (colour    ) do you use?

 

[kickingandscreaming]

I alternate between 2 greens and a green and yellow--every other night.  My manual exchange is always yellow and the "extra" fluid on the cycler is always yellow.

[Michael Murphy]

Cassandra may have hit your problem right on the head you may need a pacemaker tuneup.  If it's set too low you suffer the symptoms you are discribing I would go see your cardiologist for a check up.

[kickingandscreaming]

I'm due for a pacemaker eval. tomorrow.  So I will definitely bring this up.  Thnx.

[Charlie B53]

Have you been getting outside much lately?  When I get into my lazy moods for too many days at a time and fail to get outside I can easily fall deeper into a rut from the lack of light.

Long long ago living in Seattle with such a dark seasonal weather pattern I finally figured out that light therapy does make a huge difference in my behavior, attitude, and energy level.  I re-fit our bathroom lights by installing a couple of light 'bars' each having 5 or 6 bulbs.  The intense light brightness for the minutes I was in there every morning made a huge improvement in my wakefulness and energy.

Now living here in the mid-West we don't have such long periods of that Seattle type overcast weather so I am often able to take my book outside, sit in my chair in the sun and read. Most summer days the heat and humidity rapidly build up and send me back inside by Noon, but those couple three hours of light do make a big difference.

Give it a shot, you might feel the difference.

[kickingandscreaming]

You may be on to something, Charlie.  I used to walk several times a day and lately hardly at all.  It just takes too much effort. So that's part of it and the whole light issue.  I have low Vit. D level and I know that's a problem (working on it).

[Charlie B53]

Vit D was one of the things the Pain Dr checked.  Mine was barely registering at all.  Besides affecting energy Vit D is essential in handling pain.  I was a mess.

As a Renal Patient, the type of D they can prescribe isn't what more normal people can use effectively.  Dr had me taking two types, one a multi-mega size, until my levels started rising.  My pain control and energy became much better.

Talk to your Dr today.

And once back home, if you still don't have that energy for a walk, just sit in the sun with your book.  Sunlight on skin is a natural Vit D producer.

[Charlie B53]

Forgot to mention, Wife also has a recent history of low Vit D.  She has had a lot of depression since losing  roughly half her vision in her right eye from excessive pressure before surgery to install a vent.  Dr's increased her 'happy pill' but even that wasn't enough.  Labs found her D VERY low, like 1%. The OTC Calcium and Vit d twice daily combined with six weeks of a weekly mega dose and her D level is at least on the chart again.  Still depressed, but not at all as bad as she was.

I still have a tough time getting her outside. Almost like she is glued to that couch and TV.

[smartcookie]

I hope your appointment for your pacemaker goes well, Kickingandscreaming!  How is your breathing?  Do you get short or breath easy?  Lung problems can go hand in hand with heart problems.

[kickingandscreaming]

I had to reschedule my pacemaker appointment because my dog went AWOL today and I was tied up going crazy trying to find her ( I did).  So I will go in about the pacemaker on Thursday.  My breathing is much better since I had them reduce my dose of Metoprolal (which exascerbates asthma).  I still am short of breath, but I can't tell if it's from the many heart issues I have or from asthma.  But I am less tired since reducing the beta blocker.

[LoneHighway]

I think I know how you feel.. I haven't even started yet and I wonder what will become of me, with no family and few real friends. But I lost a dear friend last year, he was 76, and I would wish for another 5 years of his company, and I bet there is someone who feels that way about you.

This afternoon I sat on my porch looking at the clouds and the sky and I thought "if I could stay just like this forever, that would be perfect." Sometimes it's enough to "just be."

[Charlie B53]

Weather has been soo dry here the yard is fading and becoming brown. I could get outside early but by Noon the heat and humidity would drive me into the shelter of the house AC.

Ain't going out this morning.  The rains finally came.  The yard really needs it.  The dirt has dried so bad there are uncountable cracks that go almost to the center of the earth, I think.  One year I stuck a yard stick into a crack.  Never touched anything.  I turn on the garden hose and stuck it into a crack, left it run for an hour.  Never did show any signs that I even turned on the water.  It just swallowed it all!

Other tan keeping me in the house about the only thing really bad about the rain is it's gonna make the grass grow, then I'll have to mow it.

[smartcookie]

When you go for your pacemaker appointment, ask about your breathing and if you would benefit from oxygen.  They use a pulse oximeter to see what your resting and working oxygen levels are.  You might qualify for something when you sleep, which should help give you some energy. I hope they can find something to help you feel better!  And tell your puppy to stay put until Mom is ready to go wandering with him/her!

[kickingandscreaming]

My resting oxygen is always in the high 90's so that's not it.  But I do get easily winded. Lately, when ever someone listens to my heart/lungs, they say there is hardly any air moving in there.

[Charlie B53]

Do you know if you snore?  Or have any sleep apnea?

I have both, they combine to deprive the brain of any real rest.  Other threads I have spelled out the details how both keep 'waking' the brain from restful sleep and the very real benefit of my using a CPAP in getting useful rest.

It has made such a remarkable difference that I will not even consider taking an afternoon nap with my CPAP.  I have actually worn out TWO machines already in 14 years.

Ask your Dr.  There is a neat briefcase size unit you can take home, plug in, and record your sleep.  Dr can analyze the results and can tell if you need a CPAP.  The first few nights you may wake up fighting the mask, but you will soon get used to it, then you will sleep very nicely.

[kickingandscreaming]

I don't know if I snore.  And my dog hasn't reported it to me.  I do know that I sleep all night in the very same position, so I'm not tossing and turning.

[Simon Dog]

Congratulations on being reunited with you AWOL buddy.  BTDT, know how nerve wracking it can be.

[kickingandscreaming]

Thank you, SD.  It was awful, but fortunately only lasted a few excruciating hours.

[GA_DAWG]

I know that usually when I get where I feel like I have no energy and no appetite, it is time to raise my dry weight. It also seems like at those times , I have to fight the feeling of being constantly thirsty as well.

[smartcookie]

How are you today, Kickingandscreaming?  I have been thinking of you!

[kickingandscreaming]

Thank you, Smartcookie.  I am still quite sluggish and unmotivated.  I need to force myself to do anything but sit in bed and read. And everything I do do makes me tired.  I seem to a run out of steam.  I felt soooo much better when I was at 6% kidney function  when my only symptom was slight fatigue from anemia.