Forgetful?

[Goofy]

Thanks for your replies.  I really, really, understand what you are saying.  I've thought about the fact that I could get sick and I know if I waited that long, I wouldn't be able to comprehend the whole PD process. Then my husband would have to help me until I was well enough to understand what I need to do.  (I know when I get really sick, I can't concentrate and don't want to either.  I just want to feel better). 

I want to be as independent as long as I can.  I'm always telling my kids when I get old I never want to be a burden on them and they shouldn't feel guilty if they had to put me in a nursing home.  But that's really a whole different subject.

My daughter is getting married out of state March 2010 and I was really trying to hold out until then.  But knowing myself, even if I could hold out, I'd think of some other excuse to wait!

Part of my whole indecisiveness is that my doctor told me a year ago I needed to start.  He has been on my back for the past year.  I even cancelled two trips in the past year because he said he was worried that I would get sick out of town and then end up in the ER.  So that is part of why I've gone this long without dialysis.  Then add the fact that I haven't gotten really sick, I think I can still wait. 

Remember I said I can't put it in words why I won't start .  I think what I said above is what I've been trying to say all along.

My next neph appointment is 10/5.  I really don't even want to go but I never miss my appointments so I'll go but I know there is going to be a long lecture!

[The Wife]

It sounds like you've convinced yourself that END STAGE RENAL FAILURE is not serious.  What about your children and husband?  What do they feel?  If you're not going to take care of yourself for you, how about doing this for them?

Prolonging the inevitable is is only going to make dialysis harder on you and in turn, your family will have more to deal with in the end.  Is this what you want?

I'm sorry Goofy but I don't think you're seeing things clearly. 

[RichardMEL]

I think we shouldn't harp on at Goofy. I guess the last thing she needs is everyone harping on at her and putting pressure on her to start. The only thing I would say to that is that there's a reason so many people are telling you what you don't really want to hear. I think The Wife makes a really good point that potentially it will be more difficult on your family and those you love the longer you hold out.

ABout your daughter's wedding in March - I have two things to say - wouldn't you rather be stable and well enough to attend then potentially not (and imagine if you did go there and somehow get fluid overloaded or something and then have problems - it could make things difficult for all concerned. Also of course you can make arrangements with dialysis to travel to an event like that - either arrange a session at the destination - or modify your schedule to fit it in. Dialysis will give you (hopefully) a stability and ability to enjoy the festivities.

As you yourself say you can continue to find excuses and rationalisations to put it off. That's your call.. but remember your doctor is only giving you lectures and being "on your back" because s/he wants the best for you and your health - as we all do.

[KICKSTART]

Goofy , all i can say is i understand you , you fear that once you start dialysis its Final , you are then on that road with no turning back , no cure ,no treatment that is going to cure it , just dialysis till you consider a transplant. I think the majority of us have had a hard time accepting kidney failure , i know i did as mine came out of the blue! Never a days illness , superfit , went to bed , got up in the morning and bang .. kidney failure (obviously there was a cause , i was told my bodies own anti bodies attacked my kidneys) I can understand you wanting to go on as 'normal' for as long as possible , i was the same , hoping dialysis was years away. Then i had a shock , i felt generally good , just a little out of breath , but nothing bad, till literally overnight i couldnt breath and was rushed in to hospital. I had no preparation for dialysis , it hadnt even been discussed. Maybe thats the problem for you? You have found out too much? You have time to dwell on what life is going to be like from talking to us ? I know i have to do dialysis , but it doesnt mean i have to lie down and accept it , even after all these years. You will still be you when you start , just a slightly different lifestyle, but one thing is for sure its a Life. Best wishes whatever you decide. KS.

[Bajanne]

I have been having that problem with words too.  And I pride myself on being a woman of words!!  And as Kellyt showed earlier, it isn't a problem with words like 'floccinaucinihilipilification', but words like 'phone', 'car' 'scissors' , etc.!!

[Bajanne]

Here a joke you might have heard before -
Three elderly sisters lived together; their ages were 98, 96, 94.
The 98-year old called downstairs from the bathroom saying she was in the tub and couldn't remember if she had finished bathing or was now starting.
The 96-year old called out to her to hold on, that she would come upstairs and sort her out.  Then halfway upstairs she stopped and could not remember if she was going up or down and called out to ask.
The 94-year old knocked on wood and said to herself "I hope I don't get like these two", then she called out to them "Hold on, I am coming to sort you two out, just as soon as I see who is at the door!"

[KICKSTART]

floc ..what i cant even pron..pro pru.. say it, nevermind spell it !

[dwcrawford]

I think we shouldn’t harp on anyone about anything.  From what I know about Goofy she’s really not all that goofy and she will make the right decision for her in the end.  This is just a process for her and all I can do is maybe say what was right for me (as she is experiencing some of the same feelings I had and that Richard and others helped me work through).

I promised never to post again in any serious matters, but what can I say, I just lied again.

Goofy, I was not sick at all before dialysis.  I am not sick now almost five months later.  Actually I feel no different from then to now other than the changes dialysis have made in my life.  Others tell me that I look a lot better (and my vanity alone says that is good).  I will tell you one of the main things that made me go forward.  It was an amazing trust in my nephrologists and respect for him and his father.  Also the extra length they went to in order to get me started out right.  I also give lots of credit to Richardmel and to Zack but again, they didn’t harp on me but rather set an example with how they lived life and dialysis at the same time..

Now, what is good about dialysis?  On the surface nothing, but I have watched entire  movies from start to finish (having a four hour break from life three times a week).  I think I really like movies now.  Never before did I stop in the museum districts two or three times monthly just to see what is new.  But since I drive right through six times per week, I might as well stop if I’m running a little ahead of schedule.  It’s really a nice thing.  Last, and most important for me, is that I’ve never had so many friendly people around me from so many different ethnic groups and at the same time.  The UN could all take dialysis and maybe learn something from my center.  Who would ever have thought I’d develop a close friendship with a Vietnamese woman and an African Man.  This is amazing.

So Goofy, whatever you chose to do will be right for you.  I have faith in you.  And one more quick thing in closing:  Since starting dialysis I have been in great shape.  Labs are “almost” perfect, I’m on a non restrictive diet, and I am the only patient (according to my nurse) who gets NO meds.  My doctors all agree it is because I had none of the initial symptoms and therefore it all works better.  So it was positive I started before I got to feeling ill.

No advice.  Just my experience.  So, I am boring.  Most old dudes are!

[MandaMe1986]

Danny you are anything but boring...haha
 
Goofy best of luck to you.  I know this is a hard decision to make.

Just for the recored I can't remember crap!

[dwcrawford]

I have been having that problem with words too.  And I pride myself on being a woman of words!!  And as Kellyt showed earlier, it isn't a problem with words like 'floccinaucinihilipilification', but words like 'phone', 'car' 'scissors' , etc.!!

This is hilarious.  Not to make fun of you but that it is so true.  But I've always been that way.  Even before I got old I was a little rattlebrained.

Here is a free medical opinion from my doctor... If you loose you keys, don't worry about it.  If you have your keys in your hand and don't know what they are for, then you should be tested!  Really, he said that but I didn't take it too seriously.

[del]

Goofy, it is your decision what to do and when to start dialysis. My husband has been on dialysis for over 12 years now and it hasn't really changed our life much - if anything it has made it better!!  We still do all the same things we did before dialysis - more probably because for a couple of years before he started dialysis he didn't really have a lot of energy.  He wouldn't admit it at the time though!!  Please don't look at dialysis as the end of your life.  A lot of people do really well on dialysis and live a very "normal" life!!  Take care of yourself. 

[RichardMEL]

Dan -- great post and definitely not boring. Well said! 

[Goofy]

Thanks for not picking on me!  After reading the responses, I'm still trying to figure out why I'm not start.  So after a couple days thinking about this, I may have found out part of why I won't start (or should I say another excuse not to start).  I was just telling my husband that part of it is that I still urinate.  Obviously if I couldn't I would definitely be on dialysis.  Maybe I can't get past the fact although my kidneys are not functioning well, they are still functioning.

I'm in such a tizzy over this.  I just obsess about it.  One minute, I know what the right thing to do is and then the next minute I give myself some type of silly reason not to.  Its really starting to effect my job.  I honestly can't convince myself that my problems at work, i.e. remember things, constantly making mistakes and just plan not thinking, are from the PKD.

As I stated before, I really think my mind is so preoccupied with the kidney issues, that it takes over in my head and I can't concentrate on anything else.

I have my monthly blood test next week and I keep telling myself that if my by creatinine and BUN levels are worse then last months, I promise I will start.  Actually I've been saying that for the past 6 months...........just one more blood test, just one more blood test.

As you can see, I sure talk to myself a lot but I don't listen!!  All I know is I don't want to make the decision.  I wish someone would just tie me to a chair and make me do it. 

I promise when I start dialysis and I start to feel the difference, you can all say "I told you so"!

[RichardMEL]

Just a comment about urinating... I still urinated a fair bit before I started. It was really the dialysis process itself that dried that up (although I do still pass a hundred mils or so a day). You may notice though when you go that the urine would be either foamy(protein spill) and/or quite light in colour (meaning there's not much in it being filtered by the kidneys). Mine's almost clear when it happens.

[Goofy]

Its funny you mention the foamy urine and the color.  I think I mentioned in another post that I've had foamy urine for so long that I thought that was normal.  I didn't realize that meant protine was leaking.  I was told that the amount of foam changes depending on what you've eaten.  Do you know if that's true?

Also.....sorry to discuss the details, but my urine has always been pretty clear and the last month or so, its really gotten a yellowish color.  I was starting to think that maybe the deeper yellow meant my kidneys were starting to function better and getting more of the toxins out.

Trust me, you give me a symptom of kidney failure and I'll give you a reason why it could be something else.  This is why I really try not to keep asking questions or complaining about my symptoms if I don't plan on doing anything about it at this time.

Everyone, thanks for all your input and support.

[LightLizard]

dark urine means you are dehydrated. i dreaded dialysis when my doc told me i would need it soon. but i had been hospitalised and saw the poor, immobile patients wheeled to dialysis and wheeled back in, four hours later, looking so much closer to death, so i assumed that i would be in that condition when i began dialysis. i was wrong.
i have been on dialysis over two years now and am still urinating profusely. or, at least as much as i did before dialysis. the thing is, i went on dialysis when my doctor told me it was time, so i still have enough 'residual' kidney function to keep me urinating. if you wait too long to go on dialysis your kidney function ('GFR') will be so low that your residual kidney function may be non-existant. in that case, urinating will be impossible for you.
another thing that might be fooling you into thinking you are 'ok' still, is your blood pressure. if it is high, it might give you the illusion of having more energy. that is an illusion, really, and will only cause you more suffering when you are forced to begin dialysis.
kidney failure effects the brain, too, so if you hold off much longer, you will be screwing up at work more and more. dialysis is not as bad as you are making it out to be, but it will be worse if you continue to live in denial.

[KICKSTART]

Er as for urinating, well 5 YEARS nearly on dialysis and i still go !!! So sorry you cant use that as an excuse !!! (Do i hold the record ? )

[LightLizard]

you're confused. there would be something horribly wrong if you did not urinate in your pre-dialysis state. so that's really no achievment at all, but is perfectly normal. what i said was, if you delay dialysis too long, you will have no residual kidney function to speak of when you do start dialysis and will not be able to urinate at all, like many others on dialysis who have lost their
residual kidnay function. you are playing a dangerous game, and only you can be the loser.

[del]

Its funny you mention the foamy urine and the color.  I think I mentioned in another post that I've had foamy urine for so long that I thought that was normal.  I didn't realize that meant protine was leaking.  I was told that the amount of foam changes depending on what you've eaten.  Do you know if that's true?

Also.....sorry to discuss the details, but my urine has always been pretty clear and the last month or so, its really gotten a yellowish color.  I was starting to think that maybe the deeper yellow meant my kidneys were starting to function better and getting more of the toxins out.

Trust me, you give me a symptom of kidney failure and I'll give you a reason why it could be something else.  This is why I really try not to keep asking questions or complaining about my symptoms if I don't plan on doing anything about it at this time.

Everyone, thanks for all your input and support.

You may urinate a lot pre-dialysis but it is mostly just fluid and very little toxins being removed.

[willowtreewren]

Goofy, I am worried about you. As a wise person has said here on IHD, that worrying about what dialysis will be like is worse that dialysis.

Aleta

[kellyt]

Its funny you mention the foamy urine and the color. I think I mentioned in another post that I've had foamy urine for so long that I thought that was normal.  I didn't realize that meant protine was leaking.  I was told that the amount of foam changes depending on what you've eaten.  Do you know if that's true?

Also.....sorry to discuss the details, but my urine has always been pretty clear and the last month or so, its really gotten a yellowish color.  I was starting to think that maybe the deeper yellow meant my kidneys were starting to function better and getting more of the toxins out.

Trust me, you give me a symptom of kidney failure and I'll give you a reason why it could be something else.  This is why I really try not to keep asking questions or complaining about my symptoms if I don't plan on doing anything about it at this time.

Everyone, thanks for all your input and support.

This is precisely the problem in relation to how you feel, as well.  Most all of us start to feel bad over a long period of time and it's only natural that our bodies (and minds) get used to it and therefore we feel "normal" or "okay".  I, too, felt for the most part okay when my GFR was at 6.  My doctor didn't want me to start too early (because I was feeling good and my creatinine was not extremely high), but he made it extremely clear that he did not want to wait too late.  That would be worse.  My creatinine shot up to the 8's in August of 2008 and we stopped two medications and it drooped just a few points back into the upper 7's and he was satisfied.  When I as fortunate and blessed enough to receive a living donor in Nov of 2008 my creatinine was 5.1 and my GFR was 7.  I had the ammonia taste in my mouth and he was ready to start me any day.  I urinated regularly up until the morning of my transplant and that wouldn't have stopped him from starting me on dialysis if I needed to start.

Listen to your body, but listen to your doctor, too.  We all care about you Goofy!  Nothing but the best of luck to you!!!!  Let us know your progress!   

[Goofy]

I just don't know what else to say.  I know what's wrong and I know what's right; I just can't make the decision. I have a blood test tomorrow and a doctor appointment the following week.  I'll just have to see what happens.  Thanks for all your support!

[RichardMEL]

Last week I talked to a guy who just got a transplant the week before (he was in having some fluid removed because his new kidney was not producing enough urine - now it is !!). Anyway one of the things he mentioned when I asked him how he felt since the transplant and he said "I don't feel fuzzy in my head anymore!" (and also mentioned the extra energy he felt already). The fuzzy one was what got me thinking about this thread and being forgetful etc. He mentioned that exactly and suddenly his mind is clear, he's remembering stuff and felt great!

[kitkatz]

I lost the fuzzies about three weeks after I started nocturnal dialysis.  Then about nine months into it my sense of humor came back!

[Des]

The  "forgetfullness" is bugging the people around me more.... heheheh I just don't remember enough to care.

It is a pain though, I end up in fights with my teens as I insist that I was never told about a function, hockey game or party.... maybe I was... who knows.?