Absolutely terrified!

[geebee]

Okay MooseMom I deserved that!    What was I thinking?  

[MooseMom]

Okay MooseMom I deserved that!    What was I thinking?

Oh, I am not being sarcastic!  I really mean it...it is horrible having to wait for lab results!  I have been doing it for almost ten
years, and the anxiety is always there.  I am awaiting test results right now, as a matter of fact.

I would never summarily dismiss your concerns, so I am sorry if it appeared I was doing just that.   

[geebee]

Thanks MooseMom!
I did get your email so thanks for that.
Couldn't figure out how to respond from the link, sorry.
You sure have had tons of experience waiting for results.
Sorry I took it the wrong way.  Hope that didn't upset you too much.
You're very considerate, thank you.  And thanks for sharing your history.
I have finally made the decision not to go on dialysis if and when the day comes.
I am just reading too many things on how terrible it can be. 
If it will only extend my life 5 years on average I don't think that's worth it.
I'm hoping I still have a few good years left.
I have a real soft spot for seniors and now that I'm retired and have more time
on my hands would love to visit them in hospitals or retirement homes just to help
out where I can.  I'll get the results in 3 days. Hope you get the results you need.
You're the best.
Take care.

 
   

[amanda100wilson]

I think that you are taking a very negative attitude about dialysis and absorbing negative information about it.  I have been on dialysis for ten years, eight on PD and two on NxStage after a failed ten year transplant.  I did eighteen months of PD before that.  simon Dog was absolutely correct.  All modalities have risks.  I never had one infection doing PD and I have had no infections with my fistula.  Averages can be very misleading and include people with other serious co-morbidities.  I think that you are in shock, and grieving for your lost health, and in a stage of bargaining.  However, bargaining that you won't do dialysis when the time comes.  As I said, only you can make that decision and no-one will stop you, if you really decide on no dialysis.  You may not agree with this assessment, and I may be wrong, but I have been there.  There is life after dialysis, and I can vouch for this.  I have been dealing with this for about the same length of time as Bill Peckham.  I am not as adventurous as him, but I am far from dead, and I don't intend to be for some time to come.

[geebee]

Well, Amanda, you said "I think that you are in shock, and grieving for your lost health, and in a stage of bargaining."
I looked that statement over and over quite a few times and came to the conclusion that you are absolutely right.
Thanks for the straight talk.   If I ever did go with dialysis it would have to be PD as I can't imagine being stabbed twice
or more in the arm every two days with a giant needle for the rest of my life.  Simon Dog said the PD treatment usually
only lasts about five years - however you have done 8 so far.   I'll have to do more research but if my only option was
in-clinic hemo I think I would still pass on it.   I'm too new to this yet so have changed my mind on it a few times already.
This was the web article that spooked me again.  Very very negative but some of it must be true I would think.
http://www.livingkidneydonorsearch.com/living-donation/dialysis-a-poor-option/ 
I see my Doc on Friday (3 days) for the good or bad news.   If it is good news and my GFR is above 60 I still won't know
what caused it to drop in the first place and I'll realize it could do that again at any time.    But it would be nice to have a rest from
the worry and grief for a while.  If it's still under 60 he'll set me up with a Neph to take over my care.  I think I'm going to talk to a
Renal Dietician soon either way as that couldn't hurt.  Thanks again for your comments. 

[MooseMom]

Geebee, I know this may be an unfair request, but please show yourself some mercy and do you best to not think
about dialysis for now.  Even if your egfr is under 60, there is no reason to torture yourself just yet.  Once you see
a neph, assumimg that is indeed the next step, you will see that thete is much you can do to preserve your kidney
function for a long time.  Since you are neither diabetic nor hypertensive, you are already ahead of the game.

Now I am nervous on your behalf and am dreading Friday.  I will be eagerly awaiting your results.  Best of luck!

[Mr Pink]

Ah yes, the old "the storm clouds are brewing and I'm packing myself" syndrome. Yeah, I've been there, we all have. It's pretty normal to suffer from this. The good news, and arguably the best thing to remember is that dialysis isn't the end of the world, and you would appear to be still a considerable distance from it. My advice is to think of some things you've always wanted to do and do them. Embrace the freedom you still have and worry about dialysis when it happens. I visited Plitvice Lakes in Croatia about three months before I started dialysis, amongst a few other places, and I'm really glad I did.

The bad news; when you eventually reach stage 5, should that even happen, your life is going to suck. Cramps, lack of sleep, nausea, fluid retention, loss of appetite. It's awful, really awful. If your mind is messing with you now, just wait until stage 5 and a whole manner of nonsense will be flooding your thoughts. This will most likely be the worst chapter of your life. We're all sorry that it happens, but that's just the way this beast rolls, and it doesn't stop rolling until dialysis starts.

The good news; you will almost certainly start feeling better once dialysis starts, and will continue to feel better with every treatment. Yes it's a large chunk of your time, but if your retired, then you have plenty of it. I work 40 hours a week and have little in the way of spare time, but I get by. A few changes will be required, some you won't like. But hey, if you wake up in the morning and can get out of bed, you're doing better than some. You'll learn a lot too, about patience and savoring the good things about life. If you choose to have dialysis in a centre, you'll make new friends. I adore the nurses who look after me when I have dialysis and know that when my lucky day arrives and I get a transplant, I will miss them terribly.

So have a cup of concrete and harden up, you big baby. You've got lots of living still to do. Good luck.   

[Deanne]

I used to say I'd never go on dialysis, too. But when the time came, there was no question about it. I started PD on Labor Day. I had to take a week off work for training, one day off for catheter surgery, and about 3 hours every other week for appointments. Other than that, things haven't really changed that much. I hook up at night, unhook in the morning and continue my normal life. I'm looking forward to a transplant hopefully soon, but PD really isn't horrible. It's hard for me to think of it as life support because I feel so normal.

[Simon Dog]

Simon Dog said the PD treatment usually only lasts about five years - however you have done 8 so far.

Some people go a lot longer; the 5 years is a typical ballpark.   I only lasted 6 months on PD.

[geebee]

Hi MooseMom,
That's a good idea.  I still might have a few years left before having to make the dialysis decision.
That would be nice.  Thanks for being there.

[MooseMom]

Geebee, there is one other thing you might want to consider.

If you read all 8000 of my posts, you will quickly see that I am not the world's biggest optimistic nor would anyone accuse me of being a Pollyanna, but one thing I am fairly certain about is that there are going to be great strides in renal replacement therapy.  I just do not see dialysis as we know it today being financially sustainable.  As our population ages and as the younger population becomes more and more unhealthy, I think we will see an epidemic of CKD and the inevitable need for RRT (which is either dialysis or transplant).  Dialysis is expensive, labor intensive and is unable to provide a good quality of life for most people (unless you do dialysis at home, but even that is expensive and difficult).  Transplant as we know it is unworkable for many who suffer and die on the wait list.  So more and more research is going into building artificial, wearable artificial kidneys (google "AWAK") and also into building new kidneys.  I read an article just yesterday about a group of researchers who are using pig kidneys as a "scaffold" for building human kidneys.  So even if you were to eventually need RRT, it is entirely possible that by that time, you can have a kidney built with your stem cells on a pig kidney scaffold.

I have fsgs, and it took me well over 20 years to finally reach the point of needing to consider dialysis.  Kidney deterioration CAN be stemmed, depending upon the underlying cause.  I have much hope for you!

[geebee]

Hi Mr. Pink,
I appreciate the advice. 
With every reply I am receiving a new and different way of viewing this problem.
That's good.  The more knowledge I gain on this the better, especially for decision making down the road.
Your "cup of concrete" comment cracked me up!   Thanks.  I needed a laugh this morning.   
Suggesting people travel around and see the world before dialysis is a great idea - I agree.
In my case, after 34 years in the airline business I've been to everywhere on the planet I've ever wanted to see,
over 30 countries on 6 continents and 7 ocean cruises.  I don't even have a bucket list.  Very happy with my life
so far.  Was married for 23 years but don't have a wife anymore and there were no kids so I have nobody that depends on me.
I wasn't trying to brag about the travel but just wanted to give you a little background so maybe you could understand why refusing dialysis
in my case might be different than for most.   However when you talked about what stage 5 is like that has to factor into it.
Compared to the way I feel now (perfectly fine) dialysis would be horrible.    But if I felt just terrible all the time and dialysis could turn
that around then I might have to re-think the whole thing.   I keep going back and forth on this.
Just really hate needles and my pain threshold is zilch.   But thanks again for the input.     
 

[geebee]

Thanks Deanne.
It looks like since you were first diagnosed with CKD until you went on dialysis was a very long time.
That's wonderful.  I hope I have a few good years left myself. If I ever have to choose dialysis I hope
the PD option is available to me.  I guess it doesn't work for everyone.   But thanks for letting me know
your own situation.  That calms me down a bit.  Take care. 
 

[geebee]

Hi again MooseMom!
I knew someone who was on in-clinic hemo about 35 years ago and it seems that the procedure hasn't changed a bit in all that time.
However when you talk about the new research going on now, that really sounds hopeful.    If they can use pig heart valves in humans
without any problems you would think pig kidneys (or at least kidney parts) would also work.  I hope they come up with something soon
for all of our sakes.  Thanks for your comforting words.
 

[MooseMom]

Geebee, it is unfortunately true that dialysis hasn't changed all that much in 35 years, and you will find many people on IHD (Bill Peckham and Hemodoc spring to mind) who are fighting very hard against the complacency of the dialysis industry.  Both men have a website that might interest you in this regard, but again, I am assuming and hoping that this sort of discussion is irrelevant to you for years to come.  No one truly believes that in-clinic dialysis 3 x per week gives optimal results, but that is what we are stuck with (no pun intended).

Re pig kidneys and scaffolding:

http://news.ufl.edu/2013/12/04/pig-kidneys/

Regarding "wearable dialysis", there is this:

http://www.awak.com/wearable_dialysis.htm

And Deanne is a poster child for how PD should work! 

[geebee]

Hi MooseMom,
Thanks for the links.  I'll have to check them out.
I'm really scared again tonight for some reason.
Yesterday I was in a good mood.
That's life I guess.
Gotta visit friends out of town tomorrow, then Friday's the big day for results.
Thanks again for being there.

[goofball]

I was diagnosed with PKD when I was 16 and I never knew when I'd hit the Big D.  A few months ago I was in stage 4 and symptomatic, so I figure Big D was around the corner and I was so appalled by the whole idea.

Now the concept has stewed in my head for these past months and I'm mentally reconciled.  Bring on the fistula, I'm not afraid of it anymore. 

I am grateful for this website in helping me get used to the idea by grossing me out 

[Mr. B 123]

geebee,

Welcome to IHD!  There is help and friends here.  You said you were fearful of dialysis and of all the things about CKD, but when I was told about my issues the first thing I did was to learn as much as I could about my condition, be it on the internet, Neph. and places like IHD.  Knowledge is power, and our fears are usually from the unknown, so find out all you can about your condition.  There are things you can do to maintain your kidney function, diet etc.

My problem started when I was 48 and was at Stage 3, after about 9 years I went to Stage 4 and for about 6 months was at Stage 5, but back to 4 now.  Still no dialysis, knock on wood!  After I went from Stage 5 back to 4 my Neph. said we need to think/plan for dialysis so I decided to do hemo and had a fistula operation about 2 years ago and it is ready to go should my eGFR drop again.  Again I researched everything I could to help me make my decision, internet, AAKP, and kidney class at the Neph. office.  Stay informed.  Right now I am suffering from extreme pain from gout in my knees, feet and left hand and again I am learning all I can about this new issue and am working thru this latest challenge. 

Hang in there and stay informed, never give up!  Hope your numbers are all good!

[Joe]

Mr. B, they had me on Allopurinol to combat the gout. It kept my uric acid levels down to an acceptable level and prevented me from having an attack. I sympathize with you, I had gout attacks in my feet before I went on dialysis and the pain was excruciating. 

[amanda100wilson]

it's great that you are informing yourself ahead it time.  My personal take on it is, when the time comes 'suck it and see'.  you can always make the decision either way after that.  Well, you have certainly traveled.  Is there anything else that you've always wanted to do?

Amanda

[Mr. B 123]

Joe,

I tried allopurinol along with other meds and that is when my eGFR went down to 8 and ended up in the hospital for a week, kidneys didn't like that one.  Now the arthritis doc has me on Uloric for about 2 weeks and no problem so far, I go see him for labs and check up next week so we will see how things are going.

I agree, gout pain is terrible, would not wish it on my worst enemy.

[kristina]

... Has anyone heard anything from geebee?

[okarol]

... Has anyone heard anything from geebee?

Looks like she got some good responses. She posted just 4 days ago.

[geebee]

Hi everyone.
Thanks for all your feedback.
Thursday night my computer did one of those "blue screen memory dump" crashes.
It was a bad one.  Had to use a system recovery disc and load everything back in from scratch.
Finally up and running again now.

Saw my Doc on Friday and he said my eGFR had risen from 57 to 59.
He still says it's age related and I should just enjoy my life instead of worrying myself sick.
I told him a was freaking about possible future dialysis.  He said from my numbers I should never
see dialysis unless I live to be 100.  He didn't want to refer me to a Neph but I insisted.
He said they have a certain protocol and with an eGFR of 59 I would be way down on his list and
he might not see me for 4 or 5 months.  People with way lower numbers would have a higher priority
and get an appointment sooner.   That's fair I guess, makes sense.   I asked him to give me the paperwork for
a blood test as I would want to have it checked again in a few months if my Neph appointment isn't for a while.
I'm not really concerned with my number so much but the fact that it dropped from 68 in August to 57 in October.
But now that it's edging up again that's encouraging.  It's a wonderful answer to prayer.   I'm actually sleeping again at night.   
So I'm just going to leave it in God's hands and not worry about it for now.  I will be able to enjoy Christmas now where I didn't
think that would be possible earlier.   I'll get tested again in the new year as I don't want to wait too long.
I hope you all have the best Christmas and New Year possible.  I'll check back here in the new year after my next blood test.
Thanks again for all your help.
geebee     
         

[kristina]

Hello geebee, thanks for sharing the good results...

... and hopefully your good luck continues in 2013...

I wish you all the best,

and send you my kind regards,

Kristina.