Hello from Oregon! (PreD limbo)

[Katherine]

Hi All,

I'm at late stage 3. I'm almost 53. Alone. As I learn about the potential path of dialysis and sickness...I wonder if I can hack it. I'm doing what I can to eat healthily, but feel so helpless. This site is awesome. It's exactly the education I'm needing. The progression of my kidney disease is hard to guesstimate, but I want to prepare myself for whatever I can ahead of time. I'm not working right now, and wonder how I'll be able to handle the expense of treatment. I don't have a car, and wonder how I'd get to dialysis. If I'll be too sick to get myself help when I need it. A close relative, who's husband has been on dialysis for over 20 years, told me that the treatment may not be worth it - and that 'we all have to go sometime'. I very much lack family support.

I know there are people out there who've done this. Who have worked through the hurdles and adjusted. Who've learned to accept this new reality, and have been able to do it by themselves. Folks who value life and live it fully, in spite of kidney failure and having regular dialysis...or a transplant. Who totally feel life is worth it - regardless of the pain and hassle of this disease. At least I hope there are.

At this point it may be premature to future trip, but any helpful comments would be very much appreciated. Thanks!!!

[MooseMom]

Hi...am on my nook and cannot type well...will move to laptop...pls wait

[MooseMom]

Hi, Katherine.

I spent almost a decade in pre D "limbo" ("hell" is more like it), so maybe I can help you.  I really have a very good idea how you may be feeling.

First, can you tell us a bit more about the nature of your kidney disease?  Are you seeing a nephrologist?  You mention that you are not working right now...do you have access to a nephrologist who can give you advice/medication that help delay dialysis?

I learned I was in late stage 4 before I began seeing a specialist, and between the two of us, I was able to delay dialysis for almost 10 years, long enough to make it to transplant without having to go on dialysis at all.

I tortured myself learning everything there was to know about dialysis.  It's very very useful to be educated; it can be a matter of life and death.  However, dialysis is one of those things that get scarier the more you learn about it. 

You mentioned that you are doing all you can to eat healthily.  That's great, but be aware that a kidney friendly diet is NOT the same "healthy diet" that, well, HEALTHY people should be eating.  There is all kinds of information online about diet for kidney patients.  IHD has a diet and recipes forum that you may find to be helpful.

If you go on dialysis, you will be eligible for Medicare that will help with expenses.  You will also have a social worker who can advise you.

You will find a LOT of support on this site.  I'm glad you've joined, and I hope you will feel free to post your questions and your worries.  IHD has been here for me at 3AM when my worries were usually at their most intense.

[Zero]

Hi Kathy
When I found out 7 years ago I was stage 3 and denied a life insurance when I was having my 2nd child.  I was told my kidneys would fail inside a year or two.  7 years later I started dialysis.  At first it was scary and being tired and weak it seemed like too much but once I started and went to dialysis it's a 180. Depression dropped,  energy spiked, and my quality of life is great.  I'm 31 and I won't  deny I've had thoughts at my sickest time why go on...  But that I dont feel is an option until I see my kids marry and have kids themselves.  I guess what I'm trying to say is I think a lot of people go through depression about the future when your kidneys are failing.  Personally I feel that once u see and understand and go through it,  maybe visit a clinic it's a lot less stressful and scary.  I'm new to this 3 weeks but these last 3 weeks I feel better than I can remember.  I wish you the best and feel free to ask any questions.  Can I ask what your function is?

[Deanne]

Are you just getting used to the news that your kidneys are failing? I ask because I think at first everything feels hopeless, but it really isn't. Your relative has been on dialysis for 20 years! That's both good news and bad news. Bad news because his kidneys failed, of course. Good news because he's shown by example that kidney failure isn't a death sentence. I was in stage 3 for probably 10 years, and stage for for many additional years. I'm not sure about the dates when I went from one stage to the next. I was diagnosed when I was 9 and my kidneys failed at 50.

I don't have family who lives near me, either, but it hasn't been a problem. I received a transplant in February and they came out to help, but whether they came to help or not wouldn't have stopped me from getting a transplant. I'm guessing you have friends? They can be as much help, or sometimes more so, than family.

I chose to do peritineal dialysis before my transplant. It's done from home and it didn't slow me down. I still worked full time through it all, went out with friends, etc. The only thing that changed much was that I had an early bedtime.

As for not driving, it sounds like you've done fine with not driving until now. You'll be ok. I think several here don't drive. Are you in Portland or in another area with good public transportation? If you're in Portland, you already know TriMet is easy to use, and Uber is coming to some of the western suburbs. Since Uber finally has a fingerhold on the area, it seems like it'll spread.

I don't know how the financial part works since I have a full-time job with excellent medical benefits. I know many here struggle financially and I can see where this might be your biggest problem. Others here can probably give you advice on navigating the insurance world.

Welcome! 

[Rerun]

Hi Katherine, and welcome to IHD.  I'm so glad you joined us.  Where do you live in Oregon?  I'm in Spokane, WA.  Most cities have transportation.  Not the regular Bus, but a bus that comes to your door and takes you to treatment.  When you start dialysis you will be assigned a Social Worker.  Most of the time they are worthless, but keep asking questions and make them help you.  There are lots of programs out there.  I'm 53 also and been doing this off and on since I was 24.  You need to try it.  You will feel better and maybe good enough to work again.  Hang in there.

Rerun, Admin 

[Katherine]

Hi All,
Thanks so much for your supportive comments. I'm having a hard time figuring out how to respond individually...so I'll make this to all of you.
It makes such a difference to me to hear from others on this site. Reading about your experiences. I don't feel quite as lost in the deep dark hole I found myself in, following the news that I may be looking at some intense things down the road in the not too distant future. Your input lets me know that irregardless of what comes up, there will most likely be ways to cope.
I so appreciate your honest sharing.
Katherine

[Michael Murphy]

There is a whole big world in front of you called Dialysis.  The unfortunate fact is you have need told that Dialysis IMAP be in your future.  What no body tells you at this point is how much support is available to you as a kidney patient.  EERD(End Stage. Renal Disease) makes you eligible for social security disability and Medicare and the National Kidney Foundation also has programs to help people struggling with the burdens of thus disease.  Depending on how close you are to needing Dialysis you can arrange a tour of of Dialysis center where the staff will explain yor dialysis options and your rights to disability and Medicare. The other thing I would advise is that if you are not sure what form of dialysis you will pick have af fistula created as soon as possible so it can have a long time to mature. I had mine done three years before starting and it was large and ready to go when I was forced to start dialysis.  Just remember you are not alone in the US alone I there are 400,000 dialysis patients and we are all in this together.

[Darthvadar]

Hi Katherine....

  to IHD...

You'll get lots of information and good advice here... I hope it makes things a bit more bearable for you....

Please visit and post often...

Darth... Moderator...

[tyefly]

  Hi   katheryn..... My name is Kathy too......  I   live in Oregon   and I know where you live.....      I live out by the coast most of the time....    wanted to stop by and say  HI.....    nice to meet people who live so close........  I am in need of more friends these days.......    Welcome to this site.......  its a great  site  to learn from lots of people ....   

I hope to hear from you  and how you are doing   in your pre D life.

[Simon Dog]

Who totally feel life is worth it - regardless of the pain and hassle of this disease. At least I hope there are.

I can tell you with certainty there is at least one