I’m not ready for this yet.

[Naynay99]

Hey.  I’ve been plugging along okay and my latest bloodwork has been good, numbers are stable.  And yet last week my nephrologist said he thinks it’s time to get a dialysis access soon.  And I’m not even close to being mentally ready to think about that yet.  Not at all. 
Funny how I have lived my entire life since age 13 knowing this day would come, and yet it still caught me by surprise and totally unprepared when it arrived.   

I know a fistula takes a while to mature for use and he just wants to be ready for when the time comes but just the idea of it is terrifying.  I asked him what he thought of doing PD instead of hemo, and he said he will set up an appt for me to meet with his PD nurse during my winter break so I can learn more about it. 

He also encouraged me to get listed at multiple hospitals, so I set up an appt for an evaluation at the hospital where I got my first tx.  I asked my friend if he would go with me, bc I really don’t want to go alone driving into the Bronx or sit thru it all by myself and he agreed to bring me.  So that is reassuring.  It’s hard to do this alone, so it feels good to know I have friends who will be there for me.

One of the doctors I will be meeting at the evaluation is one of the surgeons who did my original kidney tx 29 years ago, which is kind of cool.   
I had intentions of multi listing this summer but it all seemed too overwhleming. 

Anyway, I suppose I am mostly just venting here.  Im scared about having to make a choice on the type of dialysis to do, when they both seem to suck equally bad.  So talking to a vascular surgeon or PD nurse is making this all seem too real and happening too fast for me. 

I can’t really talk about this stuff w my friends.  And it all seems like more than my brain can handle.  I am barely keeping my shiit together just making it to work each day and trying to follow a renal diet.  I am trying to enjoy life but it’s hard when I feel like I am holding my breathe waiting for the other shoe to drop.   

And I’m exhausted all the time.  The idea of all of this ESRD stuff just makes me want to get into bed and stay there.   I feel like I am failing at doing anything right.  I just celebrated my 42nd birthday last week, and I should have a lot more birthdays to look forward to still.  But I’m not sure that I can do any of this.   

[MooseMom]

I'll be honest; the day I had my fistula created was the worst day of my life.  It felt like I was crossing the Rubicon.  I panicked and insisted upon a general anaesthetic.  During pre-op prep, I was in tears, and the nurse just made it worse by telling me that one of their janitors recently got a kidney from a living donor, which was great for him but did absolutely nothing to alleviate my grief.

Because grief is what it was.  Grief for a "healthy" past and grief for a "healthy" future.  I was absolutely devastated.

I was not in denial, I was not naïve, I was not uneducated, but I was not psychologically prepared, either.  I understood that it was best to have a working access ready to go when the time came.  I understood it all, but I was still devastated when the day of surgery arrived.

I'm finding it rather difficult to even post about it.

I feel every single word of your post, and I have nothing really to offer other than to say that I really do understand.  It is indeed overwhelming.

Do let us know what the docs say and what choices you end up making.

[UkrainianTracksuit]

Oh NayNay, your post makes me sad. In all honesty, I can feel all those words because I had similar thoughts. It may sound so hollow but take heart knowing you are not alone and this sense of being overwhelmed is common.

The only insight I can give is to view all this as the steps required before your next transplant. Again, it sounds hollow, but visualizing as steps to a goal makes all the shitty stuff have a purpose. There may be speedbumps (such as waiting on a list, having dialysis issues) but you know what the goal is.

Accesses were difficult to create for me. I had a prior fistula that could not be saved. An AV graft that bit the dust. Another fistula attempt and then yet another. The first attempt died in days and the second one is buzzing along. Never used though. I relied on a permacath.

Every time in pre-op, I cried my eyes out before they were about to wheel me away. It was like Sinatra singing My Way.."And now, the end is near, and so I face, the final curtain." Not because I felt like I was going to die but rather, in the first case, the pre-dialysis days were done. This feeling of "being finished" before I ever really started. What a heavy weight that was...

But, I admit that I cried for two reasons: I didn't want an ugly arm! (Neither did my parents...) and I knew needles were on the way. Like MooseMom, one nurse didn't help the situation in one case. She told me that a relative was difficult to create accesses in too and he went through all this same stuff too. That's sad and all, but my concerns were different.

I understand not wanting to deal with these serious things, such as HD or PD and tx evaluation, and putting them on the backburner. Totally, I get it! But, you know, the earlier that you do manage it, make decisions and do what you got to do, it lifts some stress. (Yes, new stress enters.) And you can be better prepared, equipped even, for the next steps.

Honey, we know that you are overwhelmed. That's natural. And we know you are tired managing all this and the pre-dialysis renal world. But know that you can do this and get through. You have a whole new chapter of your life, a book even, to write once you get your second transplant. Make decisions as you can, do what you think is possible and take care. Keep us updated. 

[Michael Murphy]

Having fistula created is not the beginning of the end but basically it’s a insurance policy on the future.  After creation I spent 2 wonderful years avoiding dialysis. One women I know has spent 8 years maturing her fistula.  The more mature your fistula is the easier the start of dialysis is.  Think of the fistula as a insurance policy it’s there if you need it.  No fistula, fewer choices on the start of dialysis, in mature fistula same problem.

[Naynay99]

Hey. Thanks moosemom and ukrainian tracksuit for sharing your own stories.  It makes me feel a little better that others have felt this way and yet gotten thru it. 

Michael- I like your analogy of a fistula to an insurance policy.  And rationally I know it’s not really the beginning of the end, But in my head it still feels like it.   

I’m sure once I make the decision and move forward with this it won’t seem quite as huge as it is.  The people on IHD here seem so together and positive, with these wise yoda like sayings, while I’m stuck in the trash compactor watching the walls close in on me. (Ok so i geeked out with a Star Wars analogy there! Lol).
But it’s hard to see the reality when all I can feel is being completely overwhelmed dealing with this all.

I think maybe I will be okay.  Or not.  Idk.  I am worried about making the wrong decision with choice of type of dialysis.  It’s hard not to be colored by my past experiences.  I am scared of needles and hospitals. My few memories from being a sick kid in the hospital are traumatic ones. So it’s hard to view this in a positive light.  But I’m trying.

Hopefully meeting with a PD nurse and surgeon will help me make an informed decision and bite the bullet to do this.
Does anyone know how much in advance one needs to get a PD catheter if I decided to go that route?

I jdon’t feel very strong or brave or optimistic at the moment but I am trying to be.
 Anyway thanks for the support and all.  It does help a lot to hear other people’s experience and viewpoints.
Thanks.   Take it easy.   

[Simon Dog]

True, but some research suggests that fistulas (or is it fistuli?) contribute to cardiac remodeling so they may not come without cost.

[Naynay99]

Simon- I hear ya. I know there is a cost.  And the last thing I want to do is start p*cking with my veins.  right now my heart is actually very healthy.  But the last thing I want is to have to get an emergency chest cath bc I waited too long for a fistula. 

Idk if I am even going the hemo route yet. Having another cut in my abdomen isn’t so appealing either tho.  All of it is rather horrifying to think about the consequences. 
Like the fact I already have some arthrotis and will probably get cataracts from the damn prednisone I’ve been on most of my life. 

But I suppose the benefit of being alive still wins out over the costs...so there’s that. 













Sp mod Cas

[Simon Dog]

Like the fact I already have some arthrotis and will probably get cataracts from the damn prednisone I’ve been on most of my life. 

A short term of Predisnone gave me AVN and I lost a hip.

[cassandra]

I had an emergency PD cath installed which was fine. I hope you can have that talk with PD people soon.


Good luck, Cas