Hi from Australia

[Tolulena]

Hi everyone.

I am a 33 year old woman from Australia who has polycystic kidney disease. I'm not sure how long I have until I have to go on dialysis but reading here has made me feel much better about it. I know it sucks but I'll deal with it. And this is one of the best kidney-related places on the intertrons...I'm a tragic goth and I dunno, so many other support forums seem a bit too swept up in blindly cheery outlooks for my taste...I prefer realistic optimism, which includes acknowledging and ranting about the horrid stuff too.

 My father had PKD, he was on PD for about a year when he got a transplant, and that was going perfectly (except for the osteoporosis from the drugs...but the doc said  he was healthy enough to have hip replacement) until he got a serious blood infection about 5 months after the transplant - which he didn't survive. he died about 10 years ago. My aunt also had PKD and lived well for ten years after her transplant but then the kidney failed and she decided not to continue with HD and died about two years ago. Their mother, my grandmother, had PKD and died when she was 54 I believe of a heart attack while on dialysis, that was in 1973.

So I am pretty familiar with assorted kidney disease things...but there's a lot to learn still. "They" know a lot more about PKD in the past ten years and I'm hopeful that some of the clinical trials going on at the moment for PKD will be successful, they sound promising. I'm taking meds to keep my BP down...but I don't think other health problems I have help!!!

I also have autoimmune pernicious anemia (can't absorb B12 from food), hypothyroidism, and gluten intolerance. The dr stuffed up the gut biopsy    so I don't know whether that's Official Celiac or not but it's likely given I already have one autoimmune thing. My eGFR (55 and sliding down) isn't consistent with the amount of cysts I have (not that many, no big ones) apparently and I know that untreated hypothyroidism can cause a loss of kidney function, and apparently so can Celiac in some people...especially if you already have crap kidneys. I also had a near-zero level of iodine, low potassium, low iron and low vitamin D with slightly elevated PTH. Oh also I had some mild insulin resistance, thanks to the adrenal fatigue apparently.

I am now strictly gluten-free, taking B12 shots regularly, and taking natural thyroid hormone (Aus local compunded equivalent of Armour) as well as some DHEA (which is prescription only here) for androgen deficiency/adrenal fatigue. I have had all my edema disappear after three months on the thyroid replacement and iodine supplementation, woohoo, and have been able to halve my asthma medication, my peripheral neuropathy is disappearing, and a whole bunch of other annoying symptoms are going away, including blood sugar back to normal...thank Maude I went to this great doc, my ****** GP was about ready to declare me diabetic and put me on all the diabetes drugs, and didn't believe I was hypothyroid at all. The vitamin D3 supplements I'm taking are actually restoring my levels and PTH is normal again. Huh. I was never on Synthroid, I knew too many people who had a terrible time on it and went straight to a doc who prescribes the good stuff.

I'm having labs done again in a couple of weeks, I shall be very interested to see how my kidney function is going. Thanks for reading if you made it this far.

[monrein]

   I read all the way to the end of your intro and am only sorry that you are dealing with so many issues.  Glad you found us and you are completely correct about this site.  Many of us try to stay as positive as we can because we think it allows us to live healthier lives but sugar coated or sickly sweet  cliches can only create mental diabetes in my opinion.  Good solid information and caring support are hopefully what we have to offer....at least that's what I've found here.  Hope to hear from you often.

[paul.karen]

  Tolulena

First glad you found us here at IHD

Wow you have been through alot already.  I am glad to hear your well versed in the PKD dept.  I also have PKD but mine are big and hurt me often.  I hope your blood tests wil show you are holding kidney funtion for now.  So you can get some of the other issues taken care of.

Hate when GP's jump the gun on certain issues. I am glad you are such a good advocate for yourself.  So many people just listen and do as doctors say.
Hope to see you around many of the threads.
P&K

[Zach]

Good to have you here!
 

[willowtreewren]

 

My husband also has PKD as did his father. Dialysis has changed in the last ten years when my FIL was on PD. Yes, there are horror stories, but also success stories. My husbaand feels great on hemo. We do NxStage at home 6 days/week and that keeps his levels fairly constant and is easier on the other organs.

This is a really good community for sharing both the ups and the downs and for gaining additional information. I'm glad you found us.

Aleta

[willieandwinnie]

  Tolulena. Great introduction and we are so glad you found us. We are a great group with all the information and support you could want. Please post often. 

[David13]

Sorry to hear you have been through so much already.  I am hopeful that you will find a great deal of support and useful information here.

Welcome!   

[kellyt]

    

[babi68]

  from another aussie. Liz

[MandaMe1986]

 

[G-Ma]

 

[Ang]

 


  always  good  to  have  another  ozzie  around,

  which  part  of  the  island  to  you  call  home.?

[RichardMEL]

good to have another aussie here to share our fun with!! Sounds like you have a lot to contend with... but I also get the impression you're a tough cookie taking control of your own life!! So welcome to our site I'm sure you'll fit in just fine!!!

oops have to run, dialysis calls

WELCOME!

[Joe Paul]

Welcome Tolulena ,good to have you aboard.

[Tolulena]

Thanks for the welcomes everyone.

I am in the ACT. It's not very interesting but it's where I live! I was hoping to move to the UK for a few years but I'm not sure they will let me in on a non-tourist visa with all my health problems. :/

[RichardMEL]

Thanks for the welcomes everyone.

I am in the ACT. It's not very interesting but it's where I live! I was hoping to move to the UK for a few years but I'm not sure they will let me in on a non-tourist visa with all my health problems. :/

G'day again Tolulena (that's a hard nickname to type for some reason ). It would be cold up there now... BRRRRR.. hehe. Whenever I've visited Canberra I've frozen my boy bits off... but I digress

I am not sure if this helps or not but we had a girl in our unit (well ok, woman.. since she was like 35 ) a couple of years ago. Now she was a UK citizen to begin with so that obviously changes things, but she had been living here for about 3-4 years. Anyway her kidneys packed it in (plus diabetes) and she waited around here (Melbourne) for a bit but was assured if she went back to the UK (where her parents were) that she could get a Kidney/Pancreas transplant "within six month" - so she went back there and they (the UK) were aparently totally OK with that, she went on in centre dialysis over there pretty much off the plane and as far as I know without issue. Now she's been there for oh a year or so - has had some issues with being tested and getting her on the list for that K/P transplant, but aparently she's now on and waiting (and plans to return here if/when she gets it)...

So I know that's kind of different to your situation (or are you also a UK citizen? why do you want to go there?) but she seemed to have no problem.

Every so often I get an update on her because she keeps in semi-regular contact with one of our nurses so it's nice to hear how she's doing.

Stay warm!! 

[babi68]

I live in the ACT too. I have to agree with you, it isn't very interesting. I am actually from Wollongong but moved here for my son who has Autism. Where do you do dialysis? Liz

[Tolulena]

Hi Richard I am not a UK citizen, though my partner can get an ancestry visa so I may be able to get in via that but I don't think I'd qualify for any kind of residency visa. I guess I will have to do some emailing, the UK immigration site is not very clear on things like that. We want to go to the UK because we love it there and there is more work for him over there too. (In a recession-proof industry.)

babi68, I am not on dialysis yet. (I guess I sould be careful what I wish for...being on dialysis would certianly make things more "interesting".)

[babi68]

Sorry Tolulena,
    I should have read your post better. Canberra can be a boring place, but if you ever want to get together for coffee, just send me an email. I am free most days as I do dialysis at night. Take care. Liz

[RichardMEL]

Hi Richard I am not a UK citizen, though my partner can get an ancestry visa so I may be able to get in via that but I don't think I'd qualify for any kind of residency visa. I guess I will have to do some emailing, the UK immigration site is not very clear on things like that. We want to go to the UK because we love it there and there is more work for him over there too. (In a recession-proof industry.)

babi68, I am not on dialysis yet. (I guess I sould be careful what I wish for...being on dialysis would certianly make things more "interesting".)

Yeah it's difficult to know where you guys would sit with that but I guess if you want to get over there doing it PRE dialysis is definitely the way to go. I can understand you liking the UK I mean living in Canberra it's mostly cold and dull so even rainy UK would be more fun!!

just kidding, I love Canberra....  really!! 

[twirl]

I have pkd and my twin sister does not - my mother and her father had pkd - my two daughters have cysts on their kidneys -- two grandbabies have cysts on their kidneys --
my older sister does not have pkd but she has only one working kidney -

welcome to our website
we all can help
we are a pretty neat group of "strange " and wonderful people        

[paris]

Welcome Tolulena!  I see your fellow aussies have properly welcomed you already     You do have quite the history and lots to share with us.  Because we aren't always "sunshine and flowers"  we have a very real outlook on kidney disease.  It helps us learn when others go through tough times and they share them with us.  I, personally, want to know the good the bad and the ugly.  I think you will enjoy this family. We really do care about each other.  Glad you joined us and look forward to hearing more from you   


paris, Moderator

[Bajanne]

Welcome to our community, Tolulena!  It is nice to have another member of the Commonwealth here!  However, you guys had me wondering what on earth ACT was.  I am surmising that it means Canberra somehow!
Epoman meant for this site to be a real place where people could rant, rave, rage and vent as they needed to, as well as have real information and support through this renal challenge.  I think it is fulfilling his vision.
Please keep reading and keep posting.  You are now part of the wonderful IHD family 




Bajanne, Moderator

[Hanify]

Hiya - a bit late but there you go.  Nice to have another antipodean here.  Not too many of us from the pacific.

[Tolulena]

Hi to all the other people who've said hello too!

Have been so busy at work, but have been lurking here when I can and finally got a change to post just now while dinner's cooking!   

Got the results of my latest round of pathology - eGFR only went down one point this time, which was a nice change.