Just venting!! but there's a question at the end..

[ryosaki]

I have alports....my family calls it our family "curse". so far all first born males in my family all have it!! that's me....my two cousins and my uncle who has already passed away. My aunt just gave birth about a month ago and lo and behold...it's a boy!! Alports is a disease that females carry it but it's the males who get affected by the symptoms. It's not just the kidneys that fail too...symptoms include deafness and blindness!!lol....can anyone top that? haha.

My uncle died from alports because of the expensive tratment in the Philippines. I am lucky that I live in Australia and get dialysis and everything that goes with it for next to nothing. For those who find this interesting....One dialysis session...(that's 4 hours on the machine) in the Philippines costs 7000pesos, which equates to $190 australian dollars.  plus renting the hospital bed your using!! which would be another $20 dollars. You times that by 3 for the week and you get the idea...I'm interested, does anyone have the same situation?

[peleroja]

Can't help you, but I can at least send you warm fuzzies for your situation.  Take care.

[ryosaki]

Thanks I'm feeling warmer already!!

[billybags]

ryosaki, That is a lot of money for treatment.

[ryosaki]

Yes, but like I said, I'm very lucky that I live in Australia.

[LightLizard]

in canada the health care system takes care of all expenses. that includes dialysis and any medications one requires due to their condition. also, i can travel on the BC ferries free when i need to go to the mainland for medical reasons. (which isn't often, really). the canadian system is not as good as the british system, as far as i know, but it's a close second.
i'm sorry you have such a burden at such a young age, ryosaki-san.
but, you do come across as a relatively positive person, regardless. congratulations!

peace

LL

[keefbeer]

I.m surprised you can get dialysis in the Philippines as all their highly trained and very professional nurses seem to work in the North of England.
Last nights session at my unit was covered by one English nurse, one Polish ( very hot by the way) and seven Filipinos, there is also a large contingent of Indians.
Whilst I am happy there here looking after me it does not seem right that after degree level training they have had to leave their country that clearly needs them.

[ryosaki]

Two things....Money and salary is better if you work abroud..times a hundred!! and secondly there are more than enough degree nurses in the Philippines to occupy all the dialysis centres in the world!! haha.

Thanks, I am trying to stay positive. I recently got married early this year, so I owe my happiness to her.

[justatech]

That sounds like alot for treatment, plus renting the bed. Most of our patients here are covered by medicare/medicaid and have to pay nothing for their treatments.

[ryosaki]

The health care system is terrible. The other thing is they also re-use the tubes and filters. Each patient get's their own set, but will use the same set of tubes for a long time. I don't know how long. I was lucky that i was only there on dialysis for one week, I then flew here to Australia.

[spacezombie]

Alports sometimes affects females too but it is more rare for that to happen. I have it and my kidneys failed when I was 14, most of my hearing went when I was 7. So hi!

My family also just found out that my younger brother (he is 25) has Alports too, although his case doesn't seem to be as severe as mine.

[justatech]

Um, what exactly do you mean "resuse the tubes?" Are you talking the blood lines or dialyzers?

[spacezombie]

Yeah, what is being reused? Eek! Many years ago (mid 90s) my hospital sent me a letter telling me to reuse PD tubing sets. HAH, I told them absolutely not. Never heard another peep about it.

[ryosaki]

the tubing, the plastic tubes!! the filter, the lines that connect to your needles, all of that. they use them again and again and again. Mostly because they can't afford a new set everytime.

[justatech]

Let me be the first to say "AWWWWWWWEEEEEEwwwwwe" I have worked in reuse and had to process the dialyzers before to clean and sanitze them, but how would you do that with the lines??