Neph appt next week

[Deanne]

I had my labs run today for my appointment next week. Will this be the apointment when she tells me it's time to start the transplant eval process? At my last appointment, she asked if I knew my blood type. Since I don't know, she included it in my lab order. I don't want my kidneys to fail, but I hate this limbo-land, too.

[okarol]

What is your GFR? If it is below 20 you can get evaluated and begin to accrue time, as well as explore transplant options. Sorry, the limbo is so tough - I hope your appointment goes well. 

[Deanne]

My GFR is around 20 - 25. My neph said she'll refer me to a transplant center as soon as it drops below 20. Since she's looking at my blood type now, I suspect it means she's thinking about the referral.

[okarol]

My GFR is around 20 - 25. My neph said she'll refer me to a transplant center as soon as it drops below 20. Since she's looking at my blood type now, I suspect it means she's thinking about the referral.

I like to hear that, because many nephs expect you to begin dialysis before you can get evaluated, and more and more the trend is to get your evaluation started, even if you go inactive, because when needed you could possibly get a pre-emptive transplant. Jenna is at 17 GFR but the doctors feel she could possibly last another year or more, if all goes well. How are your symptoms? To me that is a better gauge of what your next steps should be.

[Deanne]

I've been watching your messages about Jenna and keeping her in my prayers (I don't "talk" much here, but everyone here is always in my thoughts).

Not sure about symptoms. I have a hard time staying motivated and focused at work -- symptom or burnt out/bored with my job? My memory isn't what it used to be (I hate that the most!). I even forget how to spell words - symptom or just got lazy because of spell-checkers? I think I sleep more than most people -- symptom, or just who I am? I My disease has been so slowly progressing that I think changes creep in gradually and I don't notice them until I try to remember what I was doing x-number of years ago, compared to today. And it's easy to blame things on age, too.

My neph said I can make it a goal to try for a pre-emptive transplant and avoid dialysis. I'm hoping it can happen. Looking at the statistics for the local hospitals, the wait time is about two years. I don't think a living donor is an option right now.

[MooseMom]

Deanne, what you are describing is pretty much the norm...that "limbo-land" is filled with anxiety, isn't it?  That's the question we all ask..."is THIS the appt where I'm told it's time to start D/transplant eval?"  That appt, for me, was about this time last year.  Luckily, my neph sent me to be evaluated as soon as my gfr dropped below 20, so I have been on the list since July.

I, too, am not sure which "symptoms" are CKD and which are age!  I don't think I recognize my body anymore, so it is really hard to interpret what it is trying to tell me.  I know I feel more tired than I did when my gfr was above 20, and in the mornings, I sometimes feel yucky.  I find that I need to keep something in my stomach because an empty tummy means nausea.

If your doc is wanting you to have a pre-emptive transplant, then good for him and good for you!  That's really the best solution but not often the most convenient solution.  It's a good goal to have!

Let us know the outcome of your appt.  As a matter of fact, so that we can all keep an eye on each other, we have an "Appointment with the neph" thread just for this purpose!  So if you'd like, please post about your appt on that thread because I don't want to miss your update!  (or you can just stay on this thread...it's not like this is a forum rule or anything! ) 

[Deanne]

I'd forgotten about the "appointments with the neph" thread when I started this one. Dumb because I've been reading it regularly. See what I mean about the memory thing? I'll jump over to that thread. No sense in having two threads going about the same thing.

It sounds like you & I are trotting along together, MooseMom. I'm learning a lot from your experiences and I thank you for telling us about them here. It makes it an easier path to follow.

[MooseMom]

It sounds like you & I are trotting along together, MooseMom.

I was thinking the same thing!