Introducing Myself...

[RuthWells]

Hi everyone.  I've been lurking a little bit for the last month or so, and figured it was time to take the plunge and come out of lurk-dom.  I am an almost-40 year old with PKD that until recently was quite dormant.  I'm not on dialysis yet, but expect I will be within a few years, at most.  My lurking here has given me a lot of food for thought as I contemplate that eventuality.

I look forward to getting to know all of you better!

[RichardMEL]

Welcome Ruth!

I can sort of relate to your situation as I was diagnosed some 13 years before I eventually had to start dialysis, so I had quite a bit of warning to prepare myself. I remember a lot trying to factor a potential start date into my life for a few years until it started, so someone would say "oh can you come visit me in 2 months?" "Well I don't know if I can.. I might be starting dialysis" which became a bit of a headache, and in the end felt like a lame excuse to some... and of course trying to prepare is all well and good but when you're there.. well it's different.

The one thing I can say is that I didn't come across this site until after I started.. and I kind of wish I was in your shoes to have some "real life stories" and reading to help you prepare even more. I mean the doctors and nurses can say this and that, but they don't REALLY know what it's like not having been there themselves.

I hope this is a useful place for you to come. Dialysis is NOT something nice to contemplate and it can be scary, specially at first, but know that you're not the only one out there and hopefully we can help make it easier for you when the time comes.

In the meantime my advice to you is to do as much as you can while you can... so travel... if you always wanted to see Paris (or whatever) go!!! oh and drink a little extra each day for those of us who can't I tried to do as much as I could knowing what was ahead and I think I did reasonably well, though there's still heaps to do yet!!

Finally, and I know this seems a bit silly, but try not to worry too much. It's NOT the end of the world... but it does suck, and it does impose restrictions on you but it's a heap better than the alternative.

Welcome!

[Bajanne]

Welcome to our community!  This is just the place for you to be.  But you know that already - that's why you came out of lurk-dom!  Thanks for your great welcome, RichardMel!  That is some great advice for you, Ruth.  Keep on reading, and now I expect you to keep on posting as well.  Here is a group hug from all of us - 


Bajanne, Moderator

[paris]

Welcome!  I agree with RichardMEL - enjoy and do everything you can now. I no longer plan things for "someday". I do it now and with gusto!! Friends and family want to make plans in a few months -- I want to do it now.  This is a great site and everyone is very willing to help each other. Nice to meet you!

[Sluff]

 Ruth

Welcome to IHD. I'll  keep this simple.

I look forward to your posts and I'm glad you like it here.

This is more like family than my regular family. Glad to have you here.


Sluff, Administrator

[anja]

  RuthWells to the community!

[angela515]

 

[RuthWells]

Wow, what an amazing welcome!  I'm actually getting a bit sniffly at everyone's responses.  Thank you.

RichardMEL, you hit on a funny -- when my last blood test showed that creatinine had gone up again, my family and I did actually decide that we'd better take our trip to Paris sooner than later.  We're hoping to go in the fall, when airfares drop a little bit.  I do feel that I'm cramming in a lot of "life" right now.  My husband and I are just starting to regain some social life as the kids get older, so we've been going out a lot more.  I work full time in a career I enjoy, and I'm going to school for further certification in my field.  In short, I'm trying to say "yes" to everything I can, while I can.  I do feel tired a lot of the time, and don't have anything like the energy I used to, but it's not too bad yet.   

[carolyn77531]

 

[okarol]

Hi - Nice you could join us!
Karol 

[MyssAnne]

Welcome aboard! As RichardMel says, it's not the end of the world. But do enjoy yourself while you can, without
the headache of dialysis!

[kimcanada]

  Ruth

I will be looking forward to reading your posts!

Kim

[Joe Paul]

Welcome RuthWells, good to have you aboard.

[Zach]

Good to have you with us!     

[billoggblog]

Hi Ruth,
I'm pleased that you found this site before you start dialysis,  their is an endless supplie of information to be found here, but remember, if you cant see it, Just Ask, everyone here is always willing to help

Bill.

[joanna2007]

  Ruth 

    I think you and I are at about the same spot on this journey to dialysis.   I'm pre-dialysis, my creatintine is 3.7 and GFR 13 so I don't know how long I can hold off.  Currently I feel fine, just a little tired every now and then, but I just take a nap. 

   Are you doing any special diet to be 'kind to your kidney'?

                       Joanna

[RuthWells]

Hi Joanna!  Yes, I am on a low-protein diet and am off caffeine (with the exception of occasional chocolate, which I cannot live without).  My neph suggested 38-40g of protein per day for me, but I find I'm eating less, more like 25-35g on average. 

I heard something interesting from the head of pediatric nephrology at Childrens Hospital of Philadelphia (the best kids hospital in our region).  When my son was diagnosed with PKD a few weeks ago, this doctor told me that new research is showing that excessive fluid intake can make the cysts grow, so to not encourage my son to drink a lot of fluids.  Now, I usually drink about a gallon of fluids per day, so this was interesting info!  I have cut back on my fluid intake and will run this past my neph in a few months at my regular check-up.

I am impressed that with a GFR of 13% you're not feeling worse than you are -- gives me hope!  Are you doing any special diet for your kidney?

[joanna2007]

Hi Ruth,
    Thanks for the info.  One of the things I'm learning from this website is the differences in the kidney diseases that are affecting us.  My neph has not asked me to change my diet, I keep asking if there's anything I can do to 'help my kidney' and she just says take your meds and watch your BP.    I have membranous glomerulanephritis and it must be different than the PKD in regard to liquids.  Is PKD an inherited condition?  How old is your son and how his he doing?

    How long have you been on the low protein diet?  Man, I love my protein this is going to be hard for me.  I just started limiting myself and I quit drinking diet colas....a big sacrifice 

     What is your creatintine and GFR? 

     Yes, the more I read of other people's experiences I'm realizing  I've been very fortunate for the last 25 years since I was diagnosed I haven't had any outward symptoms except high BP, high chol and I get a little tired.   I'm also lucky that I own my own businesses so if I need to take some time off or cut back on my office hours I just let one of my sons or my daughter-in-law work for me.

    Joanna

[Wattle]

 

[kitkatz]

Welcome to the IHD.com site.  There is a lot to look at and plenty to talk about! Come on over!






kitkatz, moderator

[RuthWells]

Joanna,

PKD is indeed an inherited condition -- I got it from my father.  My son is doing fine; he's only 11 and likely won't have any problems until his 30s or 40s, if at all.

I know that the liquid and caffeine cautions are specific to PKD, as they enhance the growth of the cysts, but it's my understanding that anyone with any impairment of kidney function can benefit from a lower protein diet.  Proteins are the hardest nutrients for the kidneys to process, so if you minimizen protein, it gives them a break. 

The reality is that most Americans eat waaaaaaay more protein than they need (like double to triple), so nutritionally speaking, we can all benefit by cutting back a bit!  I am eating a "mostly-vegetarian" diet and find that it cuts my protein intake down to 25-35g per day.  I do indulge once in a while on special occassions, but not often.  I started the low protein around the end of 2005 and promptly lost about 7 pounds -- so that was a benefit, as well.  ; )

My last creatinine was 1.4 with a GFR of 44%, but I know the numbers have changed.  I've had to increase my BP meds and am counting the weeks until my next labs (early May).

I feel lucky also, in having had enough advanced warning to get as ready as I can be.  I have time to maximize my voluntary disability insurance at my job, for instance, and time to investigate what my health insurance will and will not cover for transplantation.  My job also offers voluntary "catastrophic care" insurance, which pays out in the event of major organ transplantation, so I have time to maximize that, as well.  I feel much better knowing that I can get my financial affairs in order before being sidelined.