Hi Bill … good mornin’
Coventional and PD was debated extensively in this home… at first we were looking into PD …actually it was pushed … like saying that Jessie was a perfect candidate for PD…but then I really started looking into 'IT" what we were not made aware of was the number of cases of peritonitis and other infections. We were not about to put Jess in any position regaurdless of what we were told about simple precautions to prevent such occurances. Then thier was the actual amount of time he would have had to spend doing the whole procces. Then thier was the question of him having to be dialyzed during school hours… I could visualize a student walking in … that would go around like a blaze… “peer group id” Then Jessie started talking about his social life , well that put a end to the debate.
So then I started really searching and that was when I ran into John Agar at Geelong after going over ( over and over )his site I showed Jessie, he liked what he read. Since then we have researched nocturnal and now are absolutely positive that nocturnal and or home hemo is what’s “optimal” for Jess. When I told Jess’s neph about what we were looking into he agreed wholeheartedly… the only question I had for him was “Why in the hell did you not tell us about this before” actually I was a bit peeved right off.
He was well aware of John’s programme.
To-day we are in touch with programmes from Humber (Andreas Pierrato), TO General and London, they are all very interested in having Jess getting refered to them. That happend tomorrow am. He’ll probably start dialysis tomorrow also… he is prepared ! So that’s where we stand to-day…
Regards Richard C/O Jessie
Wow, Jessie’s first treatment is tomorrow? Can you provide more details?: your projected ‘ideal’ schedule and treatment goal. With winter coming does that limit your ability to train so far from home or are you training locally?
A Bit on Forum Mechanics
Richard, I want to suggest that instead of starting a “new thread” just keep replying to a single thread. For instance if all of your posts to date had been to a single thread it would be easier to keep track of Jessie’s situation. As you read through past threads, when you see something interesting or something that triggers a question, then do not hesitate to post a reply. This will bring the entire thread to the top of the forum.
Check out some of the big threads on this board and you will see that the discussions can ebb and flow over months and months. Time can be meaningless in regard to some of these threads - the information is current even if the discussion happened months ago - so you can revive any conversation by simply replying to the thread.
[QUOTE=Bill Peckham;11237]Wow, Jessie’s first treatment is tomorrow? Can you provide more details?: your projected ‘ideal’ schedule and treatment goal. With winter coming does that limit your ability to train so far from home or are you training locally?
A Bit on Forum Mechanics
Richard, I want to suggest that instead of starting a “new thread” just keep replying to a single thread. For instance if all of your posts to date had been to a single thread it would be easier to keep track of Jessie’s situation. As you read through past threads, when you see something interesting or something that triggers a question, then do not hesitate to post a reply. This will bring the entire thread to the top of the forum.
Check out some of the big threads on this board and you will see that the discussions can ebb and flow over months and months. Time can be meaningless in regard to some of these threads - the information is current even if the discussion happened months ago - so you can revive any conversation by simply replying to the thread.[/QUOTE]
Hell Bill I think I got it!! Ya i think that the writing on the wall is clear… the big guy wants to see Jess in the am. Things are moving fast … go figure… the boy played hockey last night… Like I’ve said … he just doesn’t show signs… but his blood work tells a totally different story… Sometimes I wonder if this is just one big bad dream… but then again when I look at the blood work I wake up in a hurry ! Reality has sunk in long ago…Tomorrow all sheduling,plans,goals… everything goes on the table. Training has allready begun phase 1 was just getting Jess prepared … phase 2 was teaching him about the machine (formula 2000+) that has already been started right here between Jess his mom and myself… phase 3and 4 conventional itself 3x4… and nocturnal training, phase 5 began months ago …getting him on the transplant list… and his brother , Steven, has already started that process… … luckily for us we did not get hit with all this in a sudden swoop …and had time to get the key people in place, what a crew just great so now we start… Thank Bill
Nice use of the “quote” function Richard.
I had a three year warning period that my kidneys were failing but managed to stay in denial through the transplant and about three years of dialysis. Jessie is way ahead of where I was, plus he’s got you.
[QUOTE=Bill Peckham;11252]Nice use of the “quote” function Richard.
I had a three year warning period that my kidneys were failing but managed to stay in denial through the transplant and about three years of dialysis. Jessie is way ahead of where I was, plus he’s got you.[/QUOTE] Heck ya about time I figured this out. I’ve know this day was to come sooner or later
what with the nature of Alport’s, but I kept it to myself . Now the cats out of the bag! Jess has got a lot of people with him so we pray for the best and are prepared for the worse … we’ll see ! Richard C/O Jessie