Fustration

[LaPorte]

My Doctor told me I have CKF Last year. I have been having blood test done every 6 weeks or so since January 2016 and my numbers have gone high or low depending on the category.I had the AV Fistula done mid 2017, have not started dialsys.
My GFR is at 9, was at 8 but went up to 9 in my last test Other categories such as Potassium has been in the normal range or maybe a couple of points high. I had a 24 hour urine test 2 months ago that showed Creatinine Level normal. l am frustrated because I don't feel bad in fact I feel good, yet I have this Dialsys thing hanging over my head. I am retired and love the out doors. I have a place in Northern Cal where I go to get away from San Jose for days. The waiting to see what is going to happen is getting to me. I have put my life on hold because of this crap! My love is to ride off road dirt bikes and have done so for over 40 years. Now this Dialsys thing has my head all screwed up. Don't know what to do?       

[kickingandscreaming]

There's not much for you to do except wait.  You can try improving your diet (with help from a nutritionist), but the odds aren't in your favor to dodge this bullet.  When I was at 6% I still felt fine.. And then I was struck with a case of pneumonia that landed me in the hospital unable to breathe and with legs the size of tree trunks (from fluid build up).  That was crash into dialysis.

Just because you do dialysis dpesn't preclude enjoying the things you love. 

[Michael Murphy]

Stop worrying about the numbers have the tests but ignore the results.  The test results are a good indication that dialysis is in you future.  However when is not so much predicted.  I have a house. In the Adirondacks about 200 miles north of where I live in New Jersey.  I go up frequently just go to a clinic near my house,  if you search the site you will find a picture of Bill Peckham doing his dialysis in the middle of the Grand Canyon on a raft.  The secret to dealing with the lab results is to ignore them.  Listen to your body if you feel good no Dialysys when you become symptomatic ( nausea, lethargy, short of breath) it’s time to start.  Just don’t push it to the point of needing to be sent to a hospital.  Also find out what type of dialysis you would want, and have the steps need done. For Hemodialysis you probably want to have your fistula installed before you need it.  Good Luck.
.

[iolaire]

l am frustrated because I don't feel bad in fact I feel good, yet I have this Dialsys thing hanging over my head.

Hopefully that feeling good will remain as you move to Dialysis and you will be able to maintain your current lifestyle.  Look into home dialysis so you can bring your treatments up to Northern Cal (assuming it has city water or filterable water) and impact your life a bit less.

Those of us who slide generally into dialysis might have an easier time than those who have a major health issue leading to immediate starting of dialysis. I feel very luck to have had a 3.5 years of relatively easy dialysis pre transplant.  I was able to continue to travel around the world for fun a few times per year and my healthy feeling held throughout that time.

I guess my main point is despite the sites name a lot of us are very appreciative of the life that we are able to live on dialysis, so try to minimize the fear.

[GA_DAWG]

Whether you are suffering from CKD or not, in dialysis or not, you have to make a choice whether you will allow it to destroy your life. I know people who are on both sides. Some seem to sit and fret about the net session on their off days. Others go about life as they did before, maybe with dietary and fluid restrictions, but not sitting home in dread. I know people who work, do yardwork, work out, play sports, read, even travel. They just have to make arrangements for dialysis wherever they travel to. You must decide if you will control the disease or it will control you. There may come a day when there is no choice left, but it sounds as thugh you are not at that point.

[MooseMom]

First of all, could a mod please move this discussion to the pre-dialysis forum?  This type of post is why that forum was created in the first place. 

LaPorte, it really does pain me to read your post because I felt EXACTLY the same way, for 8 very long years, as you do now.  It is a unique sort of horror.  I put my life on hold for all of those years, just waiting for dialysis to strike me down, and that remains one of the biggest regrets of my life.  I feel like I wasted that time when I could have just put the fear aside and gone on with my life.

But I'm not wired that way.  I think a part of me felt that if I didn't wallow in my fear, then I'd be guilty of being in denial.  I let the worry and the stress and the waiting-for-lab-results anxiety get the best of me, and I don't want that to happen to you or to anyone else.  If I had a worst enemy that I was desperate to see punished, I'd give him CKD and an egfr of 9, and I'd warble on to him about how his life is doomed to just get worse and worse.

In saying that, though, there was nothing that I stopped doing.  There is no reason that you can't still go dirt biking or still go to your place in N. Cal.  In fact, the more you do those things, the more your mind will be distracted from your worries.  I found only a few things that helped lessen the anxiety I felt, and one of those was just getting away and enjoying the great outdoors.  I'd also do more of the things I really enjoyed so that my mind would be occupied as much as possible.  You already have those tools available to you.  Off road biking is a terrific way to do all of this!!  How much fun is THAT?!

I don't think our doctors are good at treating our psychological injuries that occur when we are given diagnoses like CKD, which is a real shame.  It is not easy to live on a daily basis with something like this hanging over our heads.  You are right; it IS frustrating.  And some days you will feel emotionally OK, but other days you will feel the weight of it all.  That's OK.  You're allowed.  We all have our fears and our worries.  That's what brought me to IHD 10 years ago.  Several people were kind enough to talk me off the cliff.  CKD can be a lonely experience.

GA DAWG is right in that we can all make a "choice" about how we are going to cope with being pre-dialysis.  But in my view, sometimes you just feel how you feel, and "chosing" doesn't seem to be an option.  On those days, go outside and do something you enjoy.  Now, you might have to "train" yourself to put your worries and frustrations to the side for, say, just a day, and before long, you can add another day.  It's not always easy, but give it a try.

Also, continue to visit IHD and post about how you are feeling if doing so helps you.  It certainly helped me!

[Charlie B53]

Until you FEEL sick, or swell so much your legs start weeping leaking water and soaking your socks and shoes, don't woory about it yet.

When you start having the un-ignorable symptoms, only then is it time to actually begin dialysis.

The fact that you have already taken steps to prepare is great, that will save you a lot of time and sickness when it does become time.

Go enjoy your time and space while you can.  Once you start the big D, seriously think about doing treatments at home.  Taking the responsibility for your own treatments can still give you the freedom to travel and get away from the rest of us stuck in the clinics.
 I had to start with a gfr of still 20 as the swelling and leaking of my legs kept becoming infected and parking my bottom in the hospital.  Dialysis brought my legs back to normal.  What a relief.

[Paul]

I have put my life on hold because of this crap!

DON'T do that! The important thing to do at the moment is to carry on as normal. Then once dialysis starts the important thing to do then is carry on as normal. Sure, you will loose time on dialysis, but it is what you do with the rest of the week that matters. As people have already said, you can quickly progress to home dialysis, then once again the world will be your oyster. Yeah, there are a few changes you will have to make, but getting older causes that too, and everyone gets older.

Having been on dialysis a while, do you know what the worst thing about it that I have found? - Having to give up peanuts. I really love peanuts, peanut butter, Reese's' Peanut Butter Cups, etc.. The fact that my worst thing is a minor thing like that should show you how "copeable" dialysis is.

So DON'T put your life on hold, just carry on as normal. And as to when dialysis becomes necessary, let me offer you one of my favourite sayings for when things I am none to keen on happen: What will we do? - We will cope. That is what we do. We cope.

[LaPorte]

Thank you all for you comments. I know what I have to do, the hard part is doing it. It's difficult going in one direction for 74 years and then needing to take a very hard left turn. Knowing others have done it helps me realize it can be done. I guess I need to take it one day at a time and try to live as I have for those 74 years with the life modification required by this CKD.
Thank You   

[kickingandscreaming]

I took that "hard left turn" at 74 and I survived.  I'm now 76(as of last Sunday).