GFR 12... things are getting hard.

[kickingandscreaming]

I, on the other hand, had to be dragged into doing D, kicking and screaming.  My numbers were bad enough but I continued to feel good until pneumonia crashed me at 6%.  Then I had to start sudden PD when in t he hospital. Because i felt decent for so long it was easier to support my denial and resistance to the whole business.

[Charlie B53]

So I have to ask how you feel now that you are doing dialysis, the same as before or better?

[kickingandscreaming]

Actually, I feel no better than I did before I crashed. Because I actually felt OK with the exception of anemia (which I still have).  But I assume I would feel a lot worse now that I have crashed if I weren't doing D. If that makes sense.  I felt awful just b4 crashing as i was filled with fluid and couldn't breathe.  Some of that could have been the pneumonia, but most, I assume, was fluid overload. But in pre-D days I also didn't have the daily drudgery of doing D.  And I felt more in control of my life--even if the feeling was illusory. 

[Fabkiwi06]

Same here K&S... I felt fine overall, even as they were wheeling me in to the ICU. I thought my sudden symptoms were just the flu. And I feel as ok as I ever have... Not fantastic, but not as horrible as some people seem to have it. *shrugs*

[Charlie B53]

Most of you seem to be so much tougher than I.   Maybe it's that Female thing.  Being 'Guy' we tend to think that simple being physically strong that we are tough.

More and more I am coming to the realization that simply is not so.  Yes, some of us 'Guys' are quite strong physically, but......... when wired up like a stereo and electrically shocked to simulate the muscle convultions and resulting pain, of his Female which has the sensors on her picking up and measuring the contractions of child birth, sending those to the controls of the wiring connected to the 'Guy'.  It has been clearly shown 'Guys' are Wimps.

In my case, at 20% my legs leaked almost daily despite the massive water pills.  Often leaving huge messy sores which also often got infected, spending up to 12 days in the hospital.   The intense tiredness.  I asked when/if I could get started on PD.   And to see so many of you enddure many of the same symptoms until sometimes well under 10% just amazes me.   I don't know how you managed to endure it for so long.

I can understand a bit the attitude that you can't be 'sick' having a lack of say a runny nose,, common symptoms of afflictions we know and expect seasonally.  For who would ever suspect that they could have a serious organ failure.   Especially some of us at younger ages.

Many with a lack of medical insurance are reluctant to seek treatment, thinking they will get over it soon.   Then there are so many that simple refuse to go to the Doctor, plodding on until they absolutely fall in their tracks.

How do we teach people to become more aware of potential problems, and to begin preventative measures earlier?    It wouldn't surprise me if many of us missed the opportunity to stall dialysis IF, and that is a Very Big word,  IF we had made just a few small changes in our lifestyles, diets, many many years ago.  We may not have totally prevented kidney failure, just forestalled it a goodly number of years.   Alas, that' is hindsight and cannot help us but to learn to teach our young better than we did.

If they will listen.

[Charlie B53]

Just for giggles I thought I'd post the link,  the youtube list of vids 'Men in Childbirth Simulation'

It's a riot.  Us 'Guys' be wimps!

https://www.youtube.com/results?search_query=men+in+childbirth+simulation

Take your pick, there are many of them.

[kickingandscreaming]

I don't think it's a matter of being a wimp or not.  I certainly don't think of myself as "tough" or immune to pain and discomfort.  I think the issue is we're all different. Some older. Some younger. Some more health conscious, some less.  Better genes/worse genes, etc.   And kidney failure is generally a "silent killer" that you don't know about (unless tested) until there's no turning back.

I have always been very health conscious and for the last 40 years have studied nutrition (on my own) and several health discplines professionally.  I have chronic diseases in my family history and did what I could so I wouldn't follow suit.  It didn't work, but I tried.  I think I have a strong constitution and I have lived a very "clean" life-- no smoking, no drinking, minimal drugs, walking, etc..  I've always eaten a lot of vegetables and have a taste for "healthy" foods (although a bit too much of a taste for all foods). I've always been a foodie and a good cook, so I've eaten very little processed, junk foods (even with a weakness for good pastries).  I also have a basic aversion to the medical-industrial complex (I grew up with a father and brother who were arrogant doctors) so I have always tended to the more natural healing routes.

The fact of the matter was that I had no bothersome symptoms of CKD--never lost my appetite, no nausea, no swelling.  I remember when I met my surgical team for the PD catheter  I could see them looking at my numbers and looking at me and having it no  compute.  Here I was a person with 6% kidney function looking and acting pretty healthy and strong.  Actually the whole process has been somewhat surreal for me as clearly i'm very sick.  But I didn't feel that way.  That's why every cell of my body was kicking and screaming and saying "NO! I don't need no stinking dialysis!"

[OneForTheBirds]

I am meeting with the transplant team tomorrow for a half day information session.

Lately I've developped insomnia.  I got to sleept at 2-3 AM, then wake up around 5:30 with a bit of restless legs, but mainly some weird non-vomiting nausea that makes me not care if it killed me right there, because it would take me out of my misery.  I get up for an hour, do a few things, feel better and go back to sleep until 10.  I used to sleep like a baby and fall asleep before my head even hit the pillow.

[OneForTheBirds]

PD cath installation on July 15!

[LorinnPKD]

You're doing great, OneForTheBirds!  Glad you have a date set.

I've been hanging out in Stage 5 waiting for my arm to heal up and start hemo.  Lots of rest and sticking VERY carefully to the renal diet has been so helpful for battling nausea (do you get the dry heaving thing when you try to brush your teeth?  awful!) and the worst of the symptoms.

Hang in there!

[OneForTheBirds]

Oh yes, choking on the toothbrush!  I am using cheap regular REACH toothbrushes and it has helped.  What is your GFR and what symptoms do you have?

[LorinnPKD]

My GFR is 6.

No swelling or itching, but feeling mighty run down and with zero attention span.  I sleep a ton, maybe 3-4 hours at a time.  Walking up stairs leaves me gasping for breath!  It's been hot where I live and the heat just zaps me.  Nausea level is mostly manageable so long as I am eating very gently. But the toothbrush -- oh, man.  I have to wait each time until nausea has completely passed so I can get through it without dry-heaving (or worse)!!

(Haha)

I'm starting hemo this month and even though I'm a little nervous about it, one of the things I am looking forward to is vigorous toothbrushing at any time of day without steeling myself!  Small blessings... 

[OneForTheBirds]

I got my PD catheter installed this week.

My eGFR is 8, and predicted to be 6 by end of October.  It's falling in a straight line, very predictable.

Deciding when to start dialysis is more art than science I think.  Most of my numbers are good except eGFR.

I figure, by the time I am healed and trained for PD, it'll be late August so at most I'll have started two months "early" - and I feel better about getting an operation while I'm not half-dead and severely uremic.

[gilders]

One for the birds, it sounds like you're starting dialysis at just the right time, good luck.
My eGFR numbers are not at all linear.

[Simon Dog]

My kidney function is falling rapidly and linearly, so it's easy to predict that I will reach eGFR6 by Halloween.  If I'm starting PD "ahead" of the optimal time it's only going to be by a couple of months.  Why wait for a catastrophe when the course of my decline is so predictable?

If you are going the PD route, an early start may give you a bit longer time with some residual function. 

I feel better about getting an operation while I'm not half-dead and severely uremic.

Plus you can avoid an emergency groin line or chest cath.

[Michael Murphy]

Avoiding dialysis is a good thing for a while but avoiding it after the symptoms begin to make you miserable is not the best option. I firmly believe in trying to avoid dialysis as long as you feel good.  I again feel dialysis sucks but it's better then living with the symptoms of ESRD.   Dialysis is a tough start but quite quickly it becomes a chore. For 45 years I went to work 5 days a week, it was the price of having enough money to enjoy the non work time.  Now I go to dialysis 3 days a week and it's the price I pay to have the 4 non dialysis days. 

[kickingandscreaming]

It really sucks that we don't have the normal luxury of 7 days of freedom and well being-- and not be rationed to 4 or fewer.  It IS a "chore."  Something you have to do to stay alive.  It's boring, and endless and kind of rote.  I guess we all were dealt a lousy hand.  Not whining, really.  It's just that every once in a while it hits me.
'

[Michael Murphy]

Two things I bring enough toys to fill the 4.5 hour session, if I am bored since I start at 6 AM I sleep.  With my iPad I have books, movies, tv shows, Internet, I keep occupied.  Plus since I am on Social Security Disability It seems like I am being paid to be there.I used to become depressed by the never ending dialysis sessions.  I now don't worry about that since I deal a week at a time.  Every Friday I celebrate no more dialysis this week.  Next week is next weeks problem.

[OneForTheBirds]

I am doing PD, first treatment on Monday!

[cassandra]

Good luck OftB

   
         



Love, luck and strength, Cas

[LorinnPKD]

Wishing you a good session on Monday!

(BTW, I was on hemo and the nausea for toothbrushing etc. stopped within my first two sessions, which was wonnnnderful!  Wishing you the same luck and relief!)

[gilders]

Hope your first PD session went well. Just had my appointment with the PD team today, so I'm interested to hear how you got on.

[Michelle2016]

Make sure you clean the insertion site everyday. PD worked for me for about 2 years before my tx.

Take care.