Lived Experience Forum

[Kelsey]

Hi Shaz

Sorry I have taken so long to reply. I went camping for the long weekend. Thank you for your message. I see a Renal Specialist and I have seen a Dietician but I must admit my diet is not as good as it could be. Thanks for your comment re the meds. It would be really good to discuss actual medication but I understand the rules of the forum. Hope you stay well. Thanks.

[Kelsey]

Just another thought re drinkiing water. I have never discussed exactly how much I should drink, rather I am told to 'keep up your fluids'. I drink at least 3 litres a day. It is had in Winter but I understand the possibility of a bad reaction from the medication which has caused the kidney damage and I don't want to risk that.

[Shaz51]

I see a Renal Specialist and I have seen a Dietician--- how are you going @Kelsey 

being thinking of you this weekend xx

hello @NatureLover , @Owlunar , @greenpea , @BlueBay , @Former-Member , @Former-Member , @outlander , @eth , @Faith-and-Hope , @Adge 

I amm feeling like I am being forgotten in this journey at the moment 

[outlander]

im sorry your feeling forgotten in this journey @Shaz51 I haven't got any kidney conditions but can only imagine how tough it would be

[BlueBay]

Hi @Shaz51 

I'm sorry you feel forgotten. To be honest I haven't been on other posts. I'm sorry, you always support me snd I need to do more for you. 
I can't imagine what you're going through with all the appointments and tests you need. It must be very stressful for you. And also hard for you as you have hubby with his issues and your mum too. 
I do think of you sis 

take care ❤️❤️

[oceangirl]

Hi my sister Have u been for your follow up appointment @Shaz51 ?

Thinking of you

[Shaz51]

thank you my sisters @BlueBay , @outlander , @oceangirl 

I had soo many specialists and dieticians and doctors and now it has all kinda stopped 

and evrytime i do go to a doctor , I have something new but no help to what to do next 

[Shaz51]

no not yet my sister @oceangirl 

hae another blood test tomorrow because they forgot to send me the form 

[Faith-and-Hope]

 @Shaz51  .... 💙💙💙

[Former-Member]

Yes dear @Shaz51 ... its really hard to deal with so much.  It would be nice if there was someone overseeing all of these (mostly related) renal issues for you.  Someone whom you can discuss decisions, needs and alternatives with.

I wonder if your renal specialist may also be a Physician?  I know my husband's is.  A physician covers a wide range of ailments, so it could be worth discussing with your GP as to whether it would be worthwhile to be referred to one.  Its essentially a higher level of GP, as I understand it.  Kind of a specialist GP in laymans terms.  And most of them have other specialties as well.  Could be worth considering.

Another thing I wondered about is Renal patient support groups.  I had a quick look and this one seems to be a nationwide group, catering to people with all levels of renal failure ... including those on dialysis and those awaiting transplant.  I think, without looking too closely, they have a members forum as well.  Which you may find helpful.

Have a look and see what you think.  Its possible there may be other goups as well, which may also be suitable for you. https://kidney.org.au/connect/support-groups/kidney-club

Its not nice to feel that you are being forgotten in a process as important as what you're going through.

I hope some of the above may be helpful for you.  I'm sorry but I have no other advise to help.  Wish I did.

Sherry 🌺