So it all starts here?

Discussions for Patients, Family, and Friends HD For Patients
1

Hi: First of all my name is Richard my son’s name is Jessie he’s 18 . We are a team ! Jessie has Alport… AVF Oct 30/06 … very close to dialysis. For year’s I’ve seen this coming , knowing the nature of the beast (Alport’s), but for most of the time I kept it to myself. Now the cat’s out of the bag.

We are Canadians (Sudbury Ontario) , north of Toronto and the heart and soul of Nocturnal Haemodialysis,Humber River, and Andreas Pierratos to whom weare in contact.A person Ive been talking with John Agar (Geelong)suggested I come here if I need advise or if Jess or I needed to talk .

Before I started this thread I took a look at the members list… Hell of a lot of exsperience, “I’m sorry to say”. Ive been to this site before but never the message board.

For now… I’m wondering if thier are not other person from my area who may be at this site who may be in the same situation as us. Like I mentioned we are about 350-400 clicks from Humber. I want and so does Jess to have him on Nocturnal Hemo but because we are out of the 300 mile radius he may not be allowed. To this I say &%$#&%$#@ right now I’m after our goverment, Mpp, and everyone I can think of . Jessie’s dr. has been trying for years to set up a clinic or unit as they have down south, but like he say’s run around run around. He is all in favour of Jessie on nocturnal he knows the benifits supercede all. I’ve been firing off e-mails and letters left and right,no answers as of yet … Next stop the media… We will see… so like I said if your out thier drop me a note. Thanks

Richard

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[QUOTE=Jessie St Amour;11125]Hi: First of all my name is Richard my son’s name is Jessie he’s 18 . We are a team ! Jessie has Alport… AVF Oct 30/06 … very close to dialysis. For year’s I’ve seen this coming , knowing the nature of the beast (Alport’s), but for most of the time I kept it to myself. Now the cat’s out of the bag.

We are Canadians (Sudbury Ontario) , north of Toronto and the heart and soul of Nocturnal Haemodialysis,Humber River, and Andreas Pierratos to whom weare in contact.A person Ive been talking with John Agar (Geelong)suggested I come here if I need advise or if Jess or I needed to talk .

Before I started this thread I took a look at the members list… Hell of a lot of exsperience, “I’m sorry to say”. Ive been to this site before but never the message board.

For now… I’m wondering if thier are not other person from my area who may be at this site who may be in the same situation as us. Like I mentioned we are about 350-400 clicks from Humber. I want and so does Jess to have him on Nocturnal Hemo but because we are out of the 300 mile radius he may not be allowed. To this I say &%$#&%$#@ right now I’m after our goverment, Mpp, and everyone I can think of . Jessie’s dr. has been trying for years to set up a clinic or unit as they have down south, but like he say’s run around run around. He is all in favour of Jessie on nocturnal he knows the benifits supercede all. I’ve been firing off e-mails and letters left and right,no answers as of yet … Next stop the media… We will see… so like I said if your out thier drop me a note. Thanks

Richard[/QUOTE]

Hi Richard (and Jessie)
Can’t help you much because I live on the underside (; of the world but we all know what it is like waiting for the big D to arrive and wondering how we will cope and wanting the very best for ourselves and those we care about.

The only Canadian on the forum that posted regularly was Pierre, who now has a transplant but hopefully still pops in occassionally. He has a vast knowledge and a great way of explaining things so maybe he will read this and post some advice for you. People here will be only too happy to help you out also I’m sure.

Isolation can be a real bugger can’t it? The only other Nocturnees I get to speak to are those online. I am continually writing and hassling politicians here in Australia for the best services possible for those of us that don’t live near major centres, don’t give up, just keep at em’!

Hope all goes smoothly for you both. The trip is an interesting one, but I am sure it will be a lot easier than you imagine at this moment.

Take good care

3

Hi beachy

From oz are we. Must of heard of the “Geelong Experience” Victoria John Agar a downright super person. He realsteered me in the right directions. Like I said in last post since e-mailing with John I’ve been in direct contact with Andrea Pierratos who as I understand is the pioneer of nocturnal along with Robert Uldal ( god bless him )
So I think I’m on the right track. My purpose is to keep these tracks firmly planted to the ground , head in a straight line and flatten out every bump before Jessie get’s there ( by the way here’s sleeping right at arms lenght).

That is my job … my mandate.(life- long promise). Promised John also that I’d spread the nocturnal word … that has started… Sudbury Star’s editor wants to interview Jessie and I sometime next week… Really starting to make some noise.

What tickes me off mostly is that when we first started talking about types of dialysis all what was mentioned was Pd and conventional dialysis … not a word of nocturnal. It wasn’t until when we started looking into Pd that we found nocturnal and the advantages of this type. Since then it’s been… oh oh he know’s that we know he know’s sort of thing ! To sum it up now everyone is well aware that we will not be put in a position of second guessing. We have made our position clear and we are the conductors of
the train .
Forgive me if I got off track a bit ! By the way when I use I… I mean we… us

Richard & the sleeping (snoring) Jess

4

West of Toronto…

While older than your son, I am only 26. I have been frequenting this site for a few months on and off, though have yet to post.

My experiences have been completely different from yours. Nocturnal dialysis is hugely encouraged advocated my dialysis site, though has yet to really take off. I am thrilled to report, that after 2 years of in center dialysis, I have (as of June) begun conventional home hemodialysis. There have been ups and downs, but am happily settled into an ‘up’ at the moment after a fistula revision a couple of months ago.

I wish you and your son all the best.

5

From Ottawa, here.

One of those dropping in times Beachy mentioned…

I hope it all works out for you. I only live about a 10 minute drive to the home dialysis unit and the hemodialysis unit (they are side by side). I found that very handy, because things happen and I ended up having to go to the unit many times for something unexpectedly. It also meant that whenever needed, my machine could be repaired the very next morning if something broke the previous night. I never missed a treatment because of that. In the things happening unexpectedely category, it could be something as simple as you open a new bottle of water test strips one night and you find that they give you false positive readings - only there’s no way for you to know they are false. In a case like that, when you’re very far from the home unit, you’re out of luck until they can get some new strips out to you (and even then, they first have to send a tech to determine if you have a problem with your system, because something like chloramine or chlorine remaining in the city water will kill the patient).

The main problem with 350 kms is probably going to be that the maintainers can’t really support you. It’s too far. They need to come fairly regularly, and often on short notice. It’s not like you’re totally independent when doing home hemo on a conventional machine. Someone has to deliver your supplies. The carbon filter tanks need to be replaced every 3 months, water purifiers break down suddenly, etc. You also need to be able to bring your blood work collection to a lab once a month in the morning. All that can be arranged, but it costs more.

I don’t know what the solution would be in a case like yours. These programs are not approved just because they are better for the patients. That’s not a good enough reason by itself. For the beancounters, it only makes sense if the nephrologist who spearheads it can demonstrate that it costs less to the system overall than conventional hemo. There are a lot of factors involved when it’s away from the major cities like Toronto and Ottawa. Even here, we would not have 20 or so people on hemo hemo if it cost more overall. We were lucky to get the program going in the first place. It only happened because of a very determined, very dedicated neph who championed it. I’m not sure if this has changed more recently, but even here, the local hospital was actually still absorbing the cost of all this. The Ontario government itself still only paid for 3 treatments per week.

6

Hi beachy I thnink that I now have a handle on how this site works… Hopefully… thanks to Bill… I suspect Jessie will be starting dialysis tomorrow… all the people involved are sending me … by vibes… that impression… we has a appointment with the head fella … we are very prepared , so is Jessie… Jessie has family friends who just happen to work in the unit so that’s bonus here we go… From what Ive seen thus far on this site we will be around …Richard
Can’t help you much because I live on the underside (; of the world but we all know what it is like waiting for the big D to arrive and wondering how we will cope and wanting the very best for ourselves and those we care about.

The only Canadian on the forum that posted regularly was Pierre, who now has a transplant but hopefully still pops in occassionally. He has a vast knowledge and a great way of explaining things so maybe he will read this and post some advice for you. People here will be only too happy to help you out also I’m sure.

Isolation can be a real bugger can’t it? The only other Nocturnees I get to speak to are those online. I am continually writing and hassling politicians here in Australia for the best services possible for those of us that don’t live near major centres, don’t give up, just keep at em’!

Hope all goes smoothly for you both. The trip is an interesting one, but I am sure it will be a lot easier than you imagine at this moment.

Take good care[/QUOTE]