Struggling, but Feeling Great

[Bub]

I have posted several times about battling fluid overload.  Things are slowly getting better.  Each time I go in I have less to lose.  I have got to hit my dry weight by this Thursday (end of dialysis) but I think it is entirely possible. They are threatening to put me in hospital to get it under control if I cants. Apparently its more serious than I thought. 

Other issues  have arisen.  My phosphorus is really high so I have redoubled my efforts to take my binder.  My protein level is is very low.  I have some muscle man type whey protein powder approved by dietitian at my center. 

But all in all, I feel great (except when I am so heavy with fluid I cant breath).  Otherwise my energy level is very good for the first time in months. I feel like a man with kidneys (except for the inability to pee).
Sorry I am so boring.  All I ever talk about is myself.  Its all about me, me, me!

[del]

Glad you are doing better with the fluids. It is a VERY serious problem to be fluid overloaded. 

[KICKSTART]

We did try to warn you it was serious ! but its great to hear you might get there by yourself , trust me you wont want the hospital to do it !!! Every single drop will be monitored ! It is hard work there is no denying it , but once you get that fluid off it seems to become easier to keep it off ! Also the phosporus , its not just a case of taking binders , you really need to watch what you eat , i know , i know its all boring crap and trust me, we all get p'eed off with it .. honest ! 

[paris]

Good for you, Bub!  Sounds like you are trying to get everything under control.  All the restrictions are hard, but you can do it.      

[willowtreewren]

This is good news, Bub. And feeling better is such good incentive, right?

Kickstart is right about watching your phosphorus intake. You can do it! Just get used to which foods to avoid or reduce. And think about how that will help you feel even BETTER! Plus the living longer aspcet doesn't hurt! 

Keep up the good work!

Aleta

[Hanify]

Phos can be helped by trying to make your own food - i.e avoid prepackaged stuff.  Another hassle I know, but it's worth it.
Good luck.

[billybags]

Bub keep this up, watch the diet. You are doing well.

[lizabee]

Glad to hear that things are getting better!

[Jean]

It must feel really good to feel good again. Keep up the good work.

[Bub]

 
They rechecked my phos.  It originally was over 10 but is now down to 4.  Still a little higher than I want but I am now watching what I eat (and drink) and taking my phoslo religiously.

[okarol]

  Good news!

[Jean]

Way to go bub!!!!

[boswife]

   and your original post here cracked me up......"ME me me"..lol  But it is about you dang it!! For some reason this kidney ....we'll say *crap*,  makes it all about you, and me and everyone else involved.  It's so much thought about everything ya do that ya cant help but have to have more focus on your own self.  Im sure glad your doing better and sticking with your plan.  Its hard for me (even  as a caregiver) watching people comming into the center with seemingly no concern to take action to help themselves..  Im so glad,,, though i know its tough....that your giving it your all and its WORKING    keep strong until it becomes easy    or easier 

[Bub]

Boswife you understand.  I know my friends must be bored of me talking about dialysis and I don't blame them.  I even bore myself.  But I cant help it.  Dialysis has completely taken over my life.  Sometimes its hard to remember that dialysis is there for me, and not me there for dialysis.  I need a mantra.  "Dialysis is there for me --- I do not live to dialyize."

Now for a rant and a  pity party.Kidney failure and dialysis suck. I mean really, really sucks.  I cant eat many of foods that I really love.  Gosh darn it, I cant even have a glass of water for Pete's sake!  And dialysis is a part time job that doesn't pay a darn thing.  It steals 3 days of week of my time, takes time off from my work, it hurts like hell getting hooked up, leaves me feeling wasted and sick, and I am stuck with it for ever.  Not even bothering to talk about fistula problems.  Let me say only that I have my 8th fistulagram of the year scheduled.  And no matter what I do, no matter how hard I try, I feel like a failure.  First I my kidneys failed --- my fault.  Now my fluid gain is too much, or my potassium is too high, or my phosphorus is up.  Something is always out of whack. And speaking of failure, I had to go through the humiliating experience of filing bankruptcy because even with insurance my medical bills hit $60K in just a few months.

At least here I can talk of dialysis and know that anyone bothering to read my posts will know exactly what I am talking about. And know exactly how I feel.  That is sometimes hard to get across, especially at work.  So often I want to start defending myself (even when I am not being attacked) by explaining that I am not a lazy person, not lazy at all, I just am feeling so tired and so ill that I cant get as much done as I used to.  The people I work with seem to understand as best they can, but too often I get "But you look so good".  Or "You look fine".

Woo, thank you.  I feel much better getting that rant out.  No one may read a really long post hidden in an innocuous chain of posts, but it certainly was cathartic.

[willowtreewren]

I read it, Bub!

I was most concerned about the $60k in medical bills. Have you signed up for Medicare? They pick up where your primary insurance leaves off.

I understand, too, about feeling like a failure.... but gosh darn it. You are doing the best you can. I call that 100%!

Let me put it in perspective. As a teacher I would take a child who may not be the brightest bulb in the building who puts forth 100% effort over the gifted kid who coasts on 75%. (I'm not saying you aren't the the brightest bulb, Bub! LOL). But you are on board with trying to overcome all these hurdles. THAT COUNTS! You aren't a failure!

Sending hugs.

Aleta

[Hanify]

Bub, sometimes it does feel so endless - I think that's one of the hardest things to deal with (along with the fluid restrictions).  So don't beat yourself up about feeling bad - I'd be very surprised if you didn't, you're only human!!  You've had a hard road lately with your fluid, but it will get better as you get it down.  Then it won't be quite so hard.  Talk to someone at your clinic about seeing a counsellor - it's great to be able to vent on ihd but sometimes it's better talking to a real person too.  They should have someone thee you can hook up with that doesn't cost you anything.  Don't try to get through this on your own - lean on someone else when you need to.

[RichardMEL]

Maybe you could turn it around a bit and try and think of it as the part time job that doesn't pay you with money, but pays you with *life* ?!

It is very tough I know. At times it feels like what's the point? but the point is to keep you here, living, with us.

Remember Dialysis is here to help you live your life.. that's what is important.

[Bub]

I have signed up for medicacare.  Also have seen a new doctor and started taking something for depression.  I hope it makes me feel a little better.  Super stress form my kidney failure and my job is really stressful, so I needed to get a little help.  I changed personal care physicians also and really thing my new doctor will help.

[billybags]

Bub, I hope your new doctor and physician will help you to sort things out, depression is a terrible illness. I am thinking about you.

[boswife]

Aww Bub,, see your doing it again... Attacking what needs attacking..    That dang stress does terrible things to us.  I once told my son   "im glad your man enough to get help when ya need it."  I say the same to you...  DANG!!  your going through a LOT and and im glad some relief is there for you to get.  Give it time, you'll feel better and then get the strength to keep at it .  Wishing you all the best..