Guilt

[willieandwinnie]

I wholeheartedly agree with drinkboy: the loved ones are happy to be caregivers. Actually, "happy" may not cut it here. There really is no word to describe how caregivers feel...except maybe "love". We love deeply, even through the most difficult times of fear, anger, loss of hope, and all the other negative feelings.

Don't feel guilty.

Right on annabanana 

[Wayne]

What does it mean when you are outputting protein in your urine

Long story short....it is one of the main issues with fsgs.  When I was initially diagnosed, I was releasing around 8 grams of protein in my urine over a 24 hour period, the normal functioning kidneys release about 850 mg.  One of the last 24 hour samples I did it was 38 grams...we don't do many 24 hour samples anymore b/c we know it is so high.  Basically what happens is the filters start releasing protein b/c they are damaged.  Obviously after a while they start releasing other things as well and the kidneys go to crap.

[kellyt]

I can't speak for everyone else, but I wasn't offended.  I have to agree with you, that except for my fistula I pretty much look the same I always did so people who don't know me have no clue that I am ill.  I also believe I act the same as far as personality.  And I hope you are right about feeling better after d...I have my neph visit next week and I believe we are going to try and finalize which way we are going to go.  I really want to try pd first and I think my neph finally agrees that we should give it a shot first.

I don't know if I have a good answer for that.  I overall don't really feel bad, I just have no energy.  I still produce a lot of urine, of course release a lot of protein with it.  I think since I don't "feel bad"  my doctor has wanted to hold it off as long as possible.  But we are certainly getting close now...I have started pushing it a little more than I used to.  It's my decision anyway, but I think my neph is honestly trying to look out for me.

Okay, this convinces me that you are the male version of me.  It sounds like you and I are almost in the exact same place in our disease and process.  I have complete faith in my Neph and trust he'll start me if and when needed at the right time.  Fatigue and muscle weakness are my only enemies at this point.  I don't know if you saw my post from yesterday, but the "committee" has accepted my sis-in-law for donation!  She was my 4th donor tested (she's my husband's sister).  We hope to do this in November before the holidays!  I'm stoked!



Edited: Fixed quote tag - okarol/admin

[Wayne]

That is awesome!!    I have a great friend that is the same type as me and wants to be tested, but he was a drug user several years ago, so I think they would reject him right off the bat.

[kellyt]

My advice (take it for what's it's worth       LOL)  is give him (your friend) your coordinators number and let him call.  If they don't feel he's a good candidate then they will reject him.  Just tell him to be 100% honest in his interview or psych eval.    But if he truly wants to "help", let him.  Who knows, right?   Because God forbid something happens to you he will know if his heart that he at least tried.  Some people just really want to help!  He sounds like a great friend!   Only two of my friends even offered.  One is a major smoker and there is absolutely no way she can or will quit.  My other friend stepped up just before my sis-in-law started her testing so they told her to wait (they'll only test one at a time).  I saw her this last weekend and now she is pregnant, so she wouldn't be able to test for a while anyway.  But the offer, and the fact that she called my coordinator, made her and I feel really special!   

[Wayne]

So true....what would it hurt?  It's not like the cost of his evals are coming out of my pocket.

[kellyt]

Exactly!   

[Lucinda]

Hi guys.....read the book, seen the movie....I know exactly what you are talking about.  Mind you, my husband pushed me really hard when I was really tired so I never felt guilty, just murderous.  Maybe I felt a tad guilty about feeling murderous....let me think about that. Nah!!!

Then Aranesp came along and I have been a ball of energy ever since.  At worst I am a little tired at the end of the day but I still front up to the gym most days, I have started up a new business, I'm renovating my house and I am running around after a new puppy yet my neph told me it is time to hit the dial.    So, I am going on holiday to Italy for three weeks in a couple of weeks and then I will start training when I get back.

I have total sympathy for those who are going through that dreaded tiredness that even when you walk up three steps, you are gasping for breath and your whole brain just feels like it is in a fog.  I remember on day I was so exhausted I was "walking" down the stairs on my backside sobbing because I couldn't work out how I was going to get back up the stairs again.  It is a disgusting feeling.

Anyhow Wayne, I am sure you are going to feel much better once you start on dialysis.  I will be interested to hear what your Neph has to say next week.  And just as an aside, I really must stop been so intermittent here.  Can't believe that I missed a newbie as cute as Drinkboy!!!  I think Drinkboy should meet KatieJayne.  Hang on, maybe I should check his intro and see if he is married first.  I'll do that and come right back if I have made an indecent suggestion.

[Wayne]

I will let you play match maker...I am going to stay out of it!   

[RichardMEL]

Wayne,

I think many of us feel your situation in our own ways and from our own perspectives.

Several things - YES the hourly wake up call at night to pee, and then not have that much come out.. that was the bane of my life for about the last 6-9 months before dialysis. About the only really GOOD thing dialysis has given me is a real nights sleep.. I may not pee much anymore.. but at least I'm not woken on the hour at night with the urge to go stand over the bowl!!! I so understand that (I am a FSGS man too).

On the guilt thing.. yes... absolutely it is very difficult when you feel you should be doing more and like you let your partner down. Iknow when I had a gf I often felt that. She said she understood but *I* knew inside that I could do better if I wasn't sick (and don't get me started on the whole "indoor sports" situation!!) but you know what.. you can't do much about it so you have to live with where you're at - and if you try and push yourself too hard (hello Lucinda, yes I'm talking to YOU!!!) then it could just make things worse for you (and by extension your partner/family).

I think the thing is that for some aspects of our lives, ESRD and Dialysis tend to put a lot of that on pause... or at least reduce what we can acomplish with our available energy. Yes, some days are better than others... some days you can just feel like total rubbish, and others like you could run a few miles. That doesn't help things either.

All I can suggest is to know that hopefully this will be a temporary situation. Hopefully starting dialysis will get you to a stable norm where you have enough energy and better feeling to do more, and thus feel like you're not letting down your wife more.. and when the day comes that you get a transplant, that hopefully it will really bring you a far more normal quality of life back and you can go do all those things you're hanging out to do (I know- I have a long list!!).

I'm sure you talk about how you feel with your wife, and she understands and just wants to support you (like Anna, etc) but that won't stop how you feel... I guess just plan for those days when you can do things better, and have the goal of a transplant really allowing you to live the way you SHOULD be living... rather than suffering.

(and yes I know, a transplant is NOT a cure, but another form of transplant.. but it's the best thing we have now in terms of quality of life).

[andisc40]

Isn't it funny that probably most of us would be offended if our partners or family were in this role reversal.  I feel a tremendous amount of guilt yet I would consider it my responsibility to love and care for my loved ones if they were in my position.  I want to start liking myself again.  I finally got to a place in my life where I  was in a great place.  Remarried with a new baby, I had life in a better perspective and really liked myself.  I stopped trying to be a supermom (something single moms do alot), and even started treating myself every once in a while without feeling selfish.

Fast forward 3 years and here I am feeling like a pathetic invalid.  I can't stand my appearance, my limitations, and half the time my tears that only pour out when no one is home to see.  I want to dance with my teenage girls again.  I want to do cartwheels in the front yard.  I want to watch my son and his academic team win there matches.  I want to be able to run to the ocean and full up the sand bucket full of water with the baby.  It was so easy to do that less than a year ago.  I know that so many others are worse off, and I appreciate all that I do have, but the truth is just this--I have lost my identity of who and what I am.  I don't want to take on this new identity.  I wish I could disappear like the old days when the pregnant teenage girl got sent off to the "place" and came back 9 months later like her old self.

I am ususally the most positive person anyone could meet.  I read  what I write and even wonder if it is me talking.  Maybe I am such a mess because I am trying to come off of prednisone and went from 60-40 10 days ago.  Either way, this is not easy no matter what excuse I put out there.

Remember when feeling guilty that this disease is not something that we asked for or something that we had control over.  We would all love to be healthy and happy without feeling as though we are burdening anyone else.  I know our loved ones are smart enough to know that as well.  My sister told me to keep my chin up the other day and instead of crying, we laughed hysterically knowing that as fat as my neck is now--I have no choice--it is permanently up


Great day to all

Andi

[Bajanne]