New to all this and quite scared and clueless

[Bambino_Bear]

I am so glad the second surgery went well.

How are you feeling?  Are you finding things easier to deal with?  I was such a wreck when we found out my hubby needed to start dialysis.  I could not even say the word without feeling like I was going to upchuck. 

 It will be a year in October and thankfully he is still doing great on PD.  I have learned to roll with the punches so to speak.

Make sure you take a little time for yourself too. 

Best wishes on your transplant journey.   

~Nikki~

[LisaBart]

NatalieMac, you have a great sense of humour, I had to slightly giggle while reading .....
I am in Tasmania, I think here in Australia we seem to do things a bit differently to other countries and sometimes I don't understand
the terminology they speak in...however...I understood you perfectly. You are doing a great job.
Our son is now 14 and was aged 4 when his Dad got sick so has also not had his Dad to do lots of stuff with, but Dad drags himself to
sons footy games ... prelim final this Sunday! Son's Dad is hanging in at 7%... not on dialysis yet, I had a chat to him again today...how about you tlk about starting next appointment
14th August! Nah he says, we'll see what my bloods are like first. Stubborn as a mule !!
I am thinking I might start a topic for Australians...I wonder if anyone would mind? Would be good to compare notes etc on how nephs work here?? What do you think ?

[obsidianom]

My favorite nephrologist is Australian, Dr Agar.   
Your country and New Zealand have high rates of home dialysis. In New Zealand it is around 50% of dialysis patients. Australia is abit lower but still way ahead of the US.    Your husband should consider home PD or  home hemo .  It is so much better at home . That is what we do.

[LisaBart]

Obsidianom,
Have you heard anything of Professor Robert Fassett? He is presently residing ine NSW, but was in Brisbane and before that here in Tasmania.
It was he who diagnosed my husband. I do keep in touch with him via email or text if I have questions, which is great.  But the nephs who treat my husband , 2 of them studied under him.

[nataliemac]

Mark is under proff John Richmond from Ballarat who tells me he never buys his wife flowers..........shifty as a shithouse rat i think he has been a bit vague about why marks kidneys shut down floating between it being from ibuprofen to a throat infection ?? i think does it really matter they dont work and they are never going to work again how he got there is really a moot point now isnt it.

Mark has his first needling of his fistula today and it went well he said just a slight sting as he had the numbing gel first but he has had stitches a cpl times now with no local so i know he is a tough old buggar

Im stoked to announce that as soon as he does his stress test ( because he had a small heart attack 6 years ago ) he will be active on the transplant list

im also heartbroken to announce my father died on saturday from kidney failure

he had an emergency op a few months ago where they found a huge tumor in his bowel wall which he was having chemo for ( we were hopeful and optimistic  ) then his kidneys dried up and they stopped the chemo and tried to rehydrate his kidneys which started to work he was then diagnosed with terminal stomach cancer 2 weeks ago and then he gave up. My dad is not a coward by any means but i saw the light go out it was such a hard thing to see i got to spend 6 hrs with him before he went and im forever thankful for it but at the same time it was so hard to sit and watch dad struggle for breath not able to speak he never opened his eyes again they had him on 80mg morphine over a 24hr period and they gave him more to make him comfortable while we were in the palliative care suite. the nursing staff were fantastic though which was good.

i really hope and pray everything goes well with mark i dont think i could bear this devastating heartbreak again my dad was only 66

Lisabart if you want to start an ausise page send me an invite id be happy to join or look for me on fb under Natalie McDonald

[obsidianom]

Obsidianom,
Have you heard anything of Professor Robert Fassett? He is presently residing ine NSW, but was in Brisbane and before that here in Tasmania.
It was he who diagnosed my husband. I do keep in touch with him via email or text if I have questions, which is great.  But the nephs who treat my husband , 2 of them studied under him.

I just noticed this today. Sorry so late.
The only nephro in Australia I know is Dr. Agar. I think he is the worlds best.
I am in the US so everyone else I know is here.

[LisaBart]

Natalie, so sorry to hear about your Dad, wow, you've had a crappy time
So  Mark is doing well??
Alan had his first 2 hours of dialysis on the 14th, and his 6th was today, and doing really well. Though Sunday he wasn't too good, coughing a lot and I mentioned he may have fluid in his lungs...
thats what it was...I think they took 2 Litres off today? As he has to be there at 7.15am...I get him settled and stay while they needle him, then say catch you in 4 hours...LOL I have to get home to get son to school by 8.30...Next week he is on afternoons....after that he will hopefully settle into a solid routine. All the staff are lovely, even the one I thought was an old grump...she is actually sweet and has said she has had her own past medical dramas...so am ashamed I judged her...
They have 15 on of a morning and then 12 in the afternoon (patients I mean). We are just taking it one day at a time...I have to go away for a week in 4 weeks so am hoping he will be fine to travel to clinic on his own...only 5 minutes away...anyway fingers crossed.....
Question - A stress test before transplant list??  I wasn't aware they did that, though I haven't done much looking into it yet....in saying that, Alan had a heart attack 5 years ago and a 5 way bypass!!
He appears to have the strongest constitution possible !!
I'll look out for you on FB

[nataliemac]

The reason mark has to have a stress test before he can be active on the transplant list is he had a heart attack 6 years ago ( back then he had an angiogram which showed no damage ) but he hasnt had any tests done on his heart in 6 years so they are just making sure

Mark started on 2 hrs as well and then quickly went to 4 hrs and in horsham they dont talk liters they talk kgs mark usually gets 1 to 1.5 kg taken off every 2 days but others are having to have as much as 4kg taken off

Mark is doing really well so far so good anyways other than the depression that is. i really hate those days when he sends me text messages saying he has had enough and just wishes he was dead. i help him through as best i can.

just type in Warracknabeal im the only natalie mcdonald there coz im speshul

[LisaBart]

Well it takes a special type of us gals to put up with them !!

Yes here they probably talk in kg too lol but I presumed it was litres because its fluid!! Alan had about 2 off I think today....
He's doing well too, day 7 for him today and is feeling ok...he has had those 7 days on a 7.30am start...but from Monday he is starting at 3.30...
it may be a juggle for me some days but we'll sort it.
Try the tough approach with Mark...tell him no pity parties..there are many more worse off...I guess for us we knew the dialysis was eventually coming
as he was diagnosed 10 years ago...doesn't make it any easier when they start I guess....it's like a loss of total independence.....

It must be difficult with a young son for you too....he stays in school and with friends until you get home...that's an awful lot of travel for you.  We are so lucky to not have to travel to Launceston, 1.5 hrs away....
Alan loves his football..it keeps him going and our son just made the NQ squad, sadly Alan will miss seeing him train next week.....but he'll look forward to hearing about it...
What does Mark do while on dialysis...what do you do?? Away from home   I am lucky to be able to go home and enjoy the peace, or check the business, and just do things as per normal and I get back to help get him finished up.
So the sooner you get on home dialysis the better for you all !!! 

[nataliemac]

 

Im happy to announce today Mark went live on the transplant list they said because of his blood type and age he is in a really good position.....whatever that means He is terrified but eager at the same time im just so happy for him. He has come such a long way in accepting things will never be the same again and learning patience! Although he gets pretty quiet when they lose someone and its happened twice in the past few months.

One thing i find fascinating is that mark only puts on 100 grams between dialysis days even over the weekend ......he drinks pretty much whatever he likes but he does suck a lot on ice rather than drink and he pees a lot at night. Im thankful for whatever help his kidneys are still giving him.

Now i need to work out a list of things he will need to take with him should he get "THE CALL" any ideas??


and because we will be traveling to Melbourne does anyone have any ideas of super cheap accommodation? i really wish they had something like roatary house there where at least its good clean accommodation and you can pay at the end of your stay.

We are still battling with leg cramps and the occasion unexplained power vomit but mostly doing pretty well im happy to report

I hope this finds you all well too xxxxxxxxxxxx

[LisaBart]

Natalie, that's great!
I have a question this morning..Alan has been on dialysis about,  4 months now and almost has his place in the "home corner"!
Last few mornings he has been vomiting. His eyeballs are very red, his stomach hurts, feels uncomfortable. I think I have his bowel sorted but he is not terribly active....due to neuropathy too....the red eyes worry me...his psoriasis appears to be coming back too...I have said it's probably from being weaned off the prednisolone...is down to 1mg...he says it's from no cellcept...any ideas.
I have been so busy at work I haven't gotten away to be at clinic when they are hooking him up..but will make an effort today...crazy trying to run a business at Xmas, keep an eye on him, son has broken hand..I am going around in circles.!  But am still sane ! So far !
Thanks for any replies !

[PrimeTimer]

Im happy to announce today Mark went live on the transplant list they said because of his blood type and age he is in a really good position.....whatever that means He is terrified but eager at the same time im just so happy for him. He has come such a long way in accepting things will never be the same again and learning patience! Although he gets pretty quiet when they lose someone and its happened twice in the past few months.

One thing i find fascinating is that mark only puts on 100 grams between dialysis days even over the weekend ......he drinks pretty much whatever he likes but he does suck a lot on ice rather than drink and he pees a lot at night. Im thankful for whatever help his kidneys are still giving him.

Now i need to work out a list of things he will need to take with him should he get "THE CALL" any ideas??


and because we will be traveling to Melbourne does anyone have any ideas of super cheap accommodation? i really wish they had something like roatary house there where at least its good clean accommodation and you can pay at the end of your stay.

We are still battling with leg cramps and the occasion unexplained power vomit but mostly doing pretty well im happy to report

I hope this finds you all well too xxxxxxxxxxxx

That is great news to hear that Mark is now listed. Hope floats! (have been wanting to use that phrase for a while, thought I'd finally use it here).

[PrimeTimer]

Natalie, that's great!
I have a question this morning..Alan has been on dialysis about,  4 months now and almost has his place in the "home corner"!
Last few mornings he has been vomiting. His eyeballs are very red, his stomach hurts, feels uncomfortable. I think I have his bowel sorted but he is not terribly active....due to neuropathy too....the red eyes worry me...his psoriasis appears to be coming back too...I have said it's probably from being weaned off the prednisolone...is down to 1mg...he says it's from no cellcept...any ideas.
I have been so busy at work I haven't gotten away to be at clinic when they are hooking him up..but will make an effort today...crazy trying to run a business at Xmas, keep an eye on him, son has broken hand..I am going around in circles.!  But am still sane ! So far !
Thanks for any replies !

I also responded to your thread "High Phosphate". His red eyes could be caused by (for lack of better words) all the force from the vomiting. Hope he feels better and finds out what is causing all this.

[LisaBart]

 

[nataliemac]

Im sorry i cant be more help lisa but i have no idea about any of that.

Mark is only on a blood pressure medication nordip and the caltrate for a binder and now a new calcium one for his bones. other than that all his other levels are good .........as far as i know anyways.


Nothing new to report i just thought i would jump on and see how everyone was doing take care xx

[LisaBart]

Happy New Year. already half way through the month!!
Alan is doing ok, but really feeling yuck after his 4.5 hrs, they upped time as weren't happy with the clearance.
He is in home corner now and we start to learn new home machine from Monday....he told me I better go in and learn
how to hook it up...(and I was avoiding it ) !
Can't put it off forever!