Biggest Fear?

[Tinah1968]

Anyone out there that is Pre-Dialysis what is your biggest Fear? I am asking becasue I have seen people in my Family Die from this Disease that I have (IgA Nephritis) and I am afraid. I am very afraid. I keep telling myself that our situations are different but are they? I mean we have the same blood line my cousin was 45 and my Aunt was 67 I am 41.  I keep putting Happy thoughts in my head daily to try to remind myself that I am strong and I can get through this. Even though I know I am not going to get better I think I can get through it. Yet Like everyone else I have good days and bad days and I still get up for work even though some days I don't want too. But, the things that can happen to a fistula or while your on Dialysis are endless so  I am gettin more and more afraid at all the things that can happen. I always saw myself as healthy and as a fighter but some days like today I am more of a What if kind of Gal. And really am not sure what is what at this point.

[twirl]

I do not know about your disease but I have PDK and my mother and grandfather died from this diease - I know that everyday technology improves so there is always hope - my second daughter was born with a hernia in her diaphram and if she would have been born 4 years earlier when my first daughter was born - she would have died - that is how much they learned in four years -- everyday something could be improved to benefit you --- and I hope it is -- we have our down days -- dialysis does suck but we are alive - we are here to understand and try and help you --- we have been there -- felt that - you are still a fighter

[monrein]

I think your fear is entirely normal and I certainly have fears too.  I manage fear by trying to sort out the things that I can actually do something about..diet and exercise being two of them...learning as much as I can about all aspects of this illness so I can get my questions answered and then I try to relax about the rest so that additional stress doesn't make things worse.

[MandaMe1986]

I am predialysis also and I have immune complex glomerulonephritis with IgG;IgA;Igm & complements too.  I understand what you mean.  It is hard to think about. Even though I don't know anyone who has died from anything I have.  It doesn't change the thought any.  I have been to close for comfort a few times and sometimes, and its all you can think about.  I have a mother who claims to be a "realist" so her idea all along is I can die and I can die at any min. Having to write up a will at 19 wasn't easy. Of course I only had to do it because I just had my kids. But still it was very hard. I think my biggest fear is not being around to see my children grow up. When I was pregnant I told myself and everyone else that if I knew I brought two beautiful babies in to this world that was enough for me. I would be alright with that.  But truth is, I am not. Now that I have them I want more. But one thing my dad has told me more then once is "look at where we have come in 10 years.  Give us 10 more and who knows where we will be. So fight with everything in you day after day and you will make it to that 10 year mark. And then work on the next"  So that is what I am doing. Taking it day by day and trying to enjoy as much as I can while I got it.

[Tinah1968]

Thanks for the kind words, some days I have so many thoughts going through my head that I can't think correctly no matter how hard i try. I had a Dr's appointment yesterday to check my Creatnin levels and I was so stressed that my Blood Pressure went up. He made me stay there for about an hour till I had it under control. But I am just worried. I worry every time that I have an appointment wondering if this the day that I go on Dialysis. I think of the positives that can happen with dialysis but I also think of the negatives and sometimes they take over. It drives ne crazy . But again Thank you for just listening.... I will keep working out and I will keep eating right hoping that it helps.

[paul.karen]

Im pre D.

I may be lucky in the fact i have no children thus i dont fear dialysis or death.
My only concern(biggest fear) period, is leaving Karen behind.  She will get everyhting that i have if we go together my brothers get it.
I have had a rough life and seen many things i shouldnt have.  maybe this leaves me at some kind of peace with my own mortality.  If not for Karen i well may have never decided to go onto dialysis when the time comes.  And it is coming fast.

With that said i do have Karen and i was worried.
Then someone lead me to this site. (thanks SusieQ).
And my worries faded in a day or two.  Look at everyone here all doing what they have to do and getting by.  I now understand what my neph is saying when in the past it was to much info to fast.  So when Karen asked what the doc said i would shrug and say im not sure.
I have learned TONS here and it has put me at an ease with what i have been dealt.  I did nothing wrong to get this it is in gods hands.  As am I.

My advice would be to be ready.  Read up here.  Get your Fistula in plenty of time so you will be ready for the day when it comes. 

I see Dialysis will change my life.
But i dont want it to change me.
P&K