Is this kidney related?

[waltswife]

Hey other caregiver, may I trouble you for your input?  I know I've read all this on many other peoples messages but sometimes you just feel the need to ask anyway.  My hubby is tired all the time.  He wakes up and then every 3 hours needs a nap.  His night time BP is sky high.  He doesn't feel like eating, which is really, really not my hubby.  His creatinine (?) is 3.2 which isn't a bad number.  His ankles are starting to swell and his right side by the ribs hurts him.  So for those of us who watch and wait, does this seem like kidney stuff?  I've taken him to the doctors many time over the last few weeks to make sure it isn't his CHF, no sounds in the lungs, which is good.

My other thing is have you as caregivers turned off family and friends with worry over your loved one?  I try real hard not to dwell on his health, I've done everything I can do, but sometimes I can't help wanting someone to talk to about all this.  And I think I have burned out my support network.  Does anyone else feel that way? 

[boswife]

oh dear waltswife, before i even address the'illness' part, i gotta tell you, us 'partners' in this probably all have at least some of the feelings you are going through.  I'll only speak for myself here, but i tell ya, as of late, i feel i need to go to a 'group' of caregiver support type thing except....... im a people phobic in 'real life' so i cant even go talk to others (even couldnt tell my real hurts and concerns about it all to a psyke    ) about how hard it all is, and then, even if i was drug in there, well, i coudnt 'tell on' hubby as i am always way too worried i'll say something that someone will take wrong and then i would feel so horrably bad and that would just add to the whole stress of it all...lol  So yea, i sometimes squeek a bit out here, as i know that others are wonderful carring people and they wont hurt me.  I wish for you to spill all you need as the love shared here is amazing.  Im one who has family offering help all the time but im just too afraid of chasing them away by accepting it so will probably just hand it ALL over to them when i end up in the hospital myself..lol  They do beg as they know how much i do for him, and DO NOT want to have to take any of it over themselves, but as of yet, it's all about me and him.  Now, i will say, that im not fun in a conversation as of late either.  All i can add to anything is, Bo this and Bo that, and how i fight to keep an upbeat attitude  etcccccccc..  so, you see, i got my own vent out here, which is needed a bit more often..lol 

Now, as far as the "input" on his symptoms, i think yes, this is very possible kidney related..  It doesnt sound much like it by his creatinine, but are they giving you his GFR #'s to watch as well???  It shouldnt be all about numbers, but more how he feels, but if his kidney numbers are infact stable, then i would guess to check something else as well.  The swelling can also be lower heart functioning as well and should really be watched.  Bo gets swelling in legs, which, if not watched, will end up in in his lungs and has to be pulled out differently.   I do think it's 'dig' time.. Our poor men/or woman.  It hurts me so much to watch it all happen. I do also wish that i could step back and not constantly hurt so deeply about it..... all the dang time!!   Whew!!!  guess i needed all that.  I wish you the best, and if anything, i hope yu see 'your not alone' 

[WifeofDiaylsisPatient]

The last few years before my husband went on dialysis he was constantly sleeping.  He could barely stay awake more than an hour during the day without taking a nap.  6 months before he started dialysis his creatine level hovered around 3.2 to 3.4.  His appetite was fairly normal, but he had no energy, was fatigued all the time, did not sleep well at night, and he itched a lot.  The first thing I noticed when he went on dialysis is how much more alert he was, and that he stopped sleeping all day long.  He might now just take a short nap in the afternoon or a half hour nap in the morning.  It's nearly a complete 180.  Not saying that he feels a whole lot better, but he definitely is better since he started dialysis.  He's 78 years old.

[waltswife]

I want to thank you both for your input.  I guess like so many others, I just want to do something about all this.  And I feel real bad for both of you, with your problems dealing with low blood pressure.  It's got to be really hard to not call 911.  It bugs me when sometimes you just have to wait things out.  We're still pre-d, and high blood pressure is a problem.  Sometimes his numbers scare me, like 209/95.  But even though it drives me nuts I do just go to the doctor, get new prescriptions, and wait to see if they're going to work. 

When I first started reading on this forum, all I read was how much better people felt when they started dialysis.  Mainly because that was all I wanted to read.  Now I read what it's really like.  And nothing I can say would even begin to come close to the folk living it.

And Bo's wife, I've been following your postings for some time now.  You may not feel it, but you've been in my prayers.  You and so many others on this site.  I may not really know any of you, but I do think of you all often, and and thankful for all that you all share.

[Poppylicious]

Hi waltswife.  I'm afraid I can't answer your first query because kidney failure came crashing into our lives, rather than taking a slow meandering stroll in; one day it wasn't there and the next Blokey was having a cath inserted ready to start haemoD because his kidney function had gone from something like 59% to less than 10% [I'm making that up because I don't actually know, but his creatinine had dramatically spiked at 1600, which is 18.1 in AmeriSpeak].  However, he was VERY tired ALL the time (and still working full-time), he was HUGE (I actually had to take him to our GP on one occasion because a doctor who was treating him at a hospital kept telling him he was just fat [this was before we knew there was a major issue with his kidneys] and I knew that it wasn't just fat [I was right; wifey knows best, GP was excellent]) and he was suffering from minor ailments, such as, oh ... fluid leaking out of his legs.

With regards to having a support network I've been very lucky because my mum is my rock.  I put her through hell when I was a rebellious teenager and then I put her through hell again when I reached my thirties because she was the one person I could call when I was sad, or angry, or needed to vent about Blokey becoming ill.  She still is my rock, but things are a little better now we've had the transplant.  If my mum wasn't around I honestly have no idea who I would turn to, but I do know it definitely would NOT be my Mother-in-Law!  Everybody else seems rather detached from Blokey's kidney failure because they don't live with it and since childhood I've been very good at bottling up my feelings and not letting people know how bad stuff is; I've never been one for talking about me and besides, I prefer to listen.  I do write a blog (not so much now) and I think this helps me if I just want to release my own feelings about things.  Plus, I come here.  We all have a general understanding of what each other is going through and we may not be in physical contact but sometimes virtual contact can work just as well.

Sending you *huggles*.

I'll only speak for myself here, but i tell ya, as of late, i feel i need to go to a 'group' of caregiver support type thing except....... im a people phobic in 'real life' so i cant even go talk to others (even couldnt tell my real hurts and concerns about it all to a psyke    ) about how hard it all is, and then, even if i was drug in there, well, i coudnt 'tell on' hubby as i am always way too worried i'll say something that someone will take wrong and then i would feel so horrably bad and that would just add to the whole stress of it all...lol  So yea, i sometimes squeek a bit out here, as i know that others are wonderful carring people and they wont hurt me.

boswife, I genuinely could have written that, particularly the bit I've put into bold. *huggles* for you too!

[boswife]

Yes ms poppy    and I agree with your BOLD ness   

[Icare]

That is why IHD is a blessing! I was going though the same thing,no one to talk to about all that was going on. Our children are great but are all busy raising their families. They know how sick their mom is but don't want to deal with it. A lot of concerns and questions are answered by reading others posting.
As far as symptoms of kidney failure each person can be different. My wife had non of the usual symptoms.she would be walking and just black out and fall. She was on pain meds for neuropathy and she was overdosing because her kidneys were not remove the meds.