Hello

[Wattle]

I would like to introduce myself. I am a 38 yr old married mother of two, who in her spare time fits in a little dialysis and part time work.

I have been on PD for 19 months. Waiting for a Transplant. The average wait in Australia is 4 years, so I am getting use to the idea of the phone ringing one day.

It has been a wild rollercoaster ride of emotion starting dialysis. My renal failure is due to PKD, with a long family tree of bad genetics. My father had a rough time and died at 41. Two transplants, Hemo and PD. So I was a little (ok very) worried that it was history repeating itself. Also by the time I resigned to the fact I could no longer avoid dialysis I was really sick. I was unable the think rationally or stay awake! Dialysis has helped and I now feel able to cope better with what is ahead for me. I was so worried about how it would affect my children (10 & 12) but they are fantastic and so understanding. Ok its not what I wanted for them, having a sick Mum but they have a Mum and a Dad and I am planing on keeping it that way!

[okarol]

  Welcome Wattle!
You're setting a great example for those kids by taking care of yourself!
How did you find ihatedialysis? It's a great place to belong to!
Best wishes,
Karol

[Amanda From OZ]

  Watlle.

This is a great site and i know you will find it very helpful.

I am also from Australia (Sydney). Where abouts in australia are u?

[Joe Paul]

Welcome Wattle, good to have you aboard.

[charee]

Welcome Wattle great to have another Aussie on board, What state do you live in with a 4 year wait?  I'm in NSW and have been told it s now 71/2 years I have pkd also  looking forward to your posts

[Wattle]

Wow! I didn't expect replies that quickly!

I am in Melbourne. I have been told the average wait is 4 years.... yes can be longer. But also told could be sooner. I try not to think about it too much now. At the start it was all I thought about. When is the phone going to ring. I had a bad experience with a girlfriend who went through 12 months of testing to be my donor (pre-dialysis), be given the go ahead and the date set...... to then pull out and disappear from my families life. Like I said emotional rollercoaster. I have NO ill feelings toward her for not going through with the transplant. It was the lack of support for my husband and children (who they thought of as an Auntie) when I started dialysis. Its funny how friends disappear when they are needed most. Anyway, I am happy to wait and when the time is right for me, my phone will ring.

[Sluff]

Welcome to IHD Wattle,

You have a great attitude, hopefully your friend will contact you again, nothings worth losing a friendship over. Glad you joined IHD.

[jbeany]

Welcome to IHD!  Sorry to hear about your friend.  Hang in there!

 

[Bajanne]

Welcome to our community!  You will find out that this is just the place to be when you are facing this challenge of renal failure.  Here you find people who really understand what you are going through.

Wow! I didn't expect replies that quickly!

That is what this site is all about - a caring and sharing community.
I look forward to hearing more from you.  Welcome again.

[Rerun]

Welcome Wattle.  I don't have PKD.  I know it is hereditary, so do your kids have it?  Can they tell at birth if they are going to end up with PKD.  Just wondering. 

I think you will find this site enlightening and interesting.  Thank you for joining our site.

Rerun - Moderator

[goofynina]

Hi Wattle,   Welcome to ihatedialysis.com,  as you can already see, we are truly a welcoming community and we all know what you are going through, so many people here (including myself) are dealing with dialysis one way or another.  I hope to hear more from you soon, 

[nextnoel]

Hi, Wattle, welcome to IHD!   I'm sorry to hear about your friend - remember, you have a bunch of new ones now, and we'll do our best to be supportive!   

[mallory]

Welcome, Wattle, glad you're here.  I'm sorry about your friend, that has to be hard.  I have some other issues so I'm not quite ready for a transplant, and a lot of people have said they'd be happy to donate.  It will be interesting to see how many are still there when I'm ready for the transplant!

Again, welcome, and keep posting! 

[Zach]

Welcome to our community, Wattle!  Looking forward to your posts.     

[MJB]

Hi Wattle,

Welcome to IHD. I am very new here also. I too have PKD. My father died from complications of CKD after 21 years on dialysis. I also have a sister and brother who have it and are doing o.k. for now. I wish you all the best and hope you are feeling a bit better now that you have started dialysis. Those who have young kids certainly have their hand full.....Don't know how you do it.

Mike

[shay_pcb]

 

[anja]

   Wattle, to this fine community.  So sorry your father passed at such a young age, having gone through so much, but you have a big family now...  Kidney disease treatments and medicines have changed tremendously , and continues to improve.  Wishing you all the best.

[angieskidney]

I would like to introduce myself. I am a 38 yr old married mother of two, who in her spare time fits in a little dialysis and part time work.

I have been on PD for 19 months. Waiting for a Transplant. The average wait in Australia is 4 years, so I am getting use to the idea of the phone ringing one day.

It has been a wild rollercoaster ride of emotion starting dialysis. My renal failure is due to PKD, with a long family tree of bad genetics. My father had a rough time and died at 41. Two transplants, Hemo and PD. So I was a little (ok very) worried that it was history repeating itself. Also by the time I resigned to the fact I could no longer avoid dialysis I was really sick. I was unable the think rationally or stay awake! Dialysis has helped and I now feel able to cope better with what is ahead for me. I was so worried about how it would affect my children (10 & 12) but they are fantastic and so understanding. Ok its not what I wanted for them, having a sick Mum but they have a Mum and a Dad and I am planing on keeping it that way!

PD is great as it offers less diet restrictions and since it is done every day it is better for you. So you live longer as long as you take care of your diet (low potassium, low phosphate, high protein). I hope the best for you and  you to IHD. I have noticed that when I was on PD I felt back to normal and not so tired anymore. I found PD better than HD where I do feel tired

Also about your father, things have improved through the years, so hopefully that makes you feel a little better! 

[RichardMEL]

G'day Wattle!

I'm in Melbourne also... we could be neighbours... but I doubt it

I never heard a 4 year timeframe mentioned.. but then again I look at it this way.. Because the list is not linear it's not like you can say "Well ok, I went on in 2006 so should get something around 2010" - because you really do NOT know when the call may come. I don't think it will come tomorrow though (on the list around 2 years) but you never know. I do sometimes get a bit anxious when the phone rings and I'm not expecting a call.. lol.

On your friend who was tested and pulled out.. that's really difficult. I imagine, possibly, the whole scope of what she was doing perhaps dawned on her and she freaked out and got scared (which is fine of course!). The most disappointing thing, from my point of view, is that she totally has gone out of your (family) lives... You seem like an understanding sort who wouldn't hold it against her for backing out at the last minute, despite how disappointing that would be for you personally... it is just sad that everyone has to suffer.

I have a feeling though that wherever she is she most likely feels bad about what has transpired but doesn't know how, or doesn't feel up, to returning to your life with what has passed. I hope she does return at some future point!

[Wattle]

Thanks everyone for the continued warm welcome! Being a home dialysis patient I don't get to meet other patients, so I can learn so much from this site.

Richard, I live in the southern suburbs and attend the Royal Melbourne. It is a bit of a drive but I like my doctor and he is one of the leaders in the field.

I too get anxious when the phone rings, usually late at night when someone is calling my husband.  My stomach does a turn...lol and I have to remind myself it will be a while before the call comes. I am nervous about a transplant, the meds etc. I was told the average waiting time is 4 years. I too was put on the 'list' early one year pre-dialysis, only to be told by the transplant clinic that the waiting time really starts the day of your first dialysis treatment. I have been on PD for 20 months. I try not to think about it now. I have settled into dialysis and feel so much better. I now just have to master travelling with PD and I will be a lot happier. I am fine with day trips, although its a bit tricky in the car...lol. I get some very strange looks!

[angieskidney]

I now just have to master travelling with PD and I will be a lot happier. I am fine with day trips, although its a bit tricky in the car...lol. I get some very strange looks!

I loved travelling with PD as I found it extremely easy. Who cares what people think if you do PD in the car. You will get stares no matter what, if you are on PD doing it in public or if you are on HD and walk around with a AV Fistula that looks like you are a druggy. At least we are alive 

[doglvr02]

Welcome Wattle! I'm happy for you that PD is working. It didn't work for me and I loved the freedom of it. I did the CAPD, every 4 or 5 hours. Hemo is so confining. Your wait time for a kidney in Australia is just about the same as it is here in Maine. Hopefully you are very close to receiving yours. Prayers are with you.