Re: Sam

[Guest guest]

Nice to be missed Marty, the message I just posted

says it all but a couple of other things --

I think J. is coming around to the idea of an

unrelated donor and by necessity, another transplant.

I'm glad of that.

What I want to know is -- How are you doing? Last time

I read anything about your situation things were a bit

tough. How is the dialysis going? Any word on the

transplant waiting list?

I hope you're well. Take care.

s.

--- Marty Hall wrote:

> We haven't heard from Samatha in a while have we?

> How are things going Sam?

>

> Marty

>

_______________________________________________________

[Guest guest]

Thanks for the update Sam. And thanks for asking about me. I'm doing pretty well. I've had an infection in my CVC (cardiovascular catheter) for about a month, but it seems to be getting better. I've been on all kinds of antibiotics including IV anseph, IV gentamiacin (only one dose due to nephrotoxity), oral Keflex, and now oral Ciprofloxin. I was getting worried that it would have to be removed and another one installed. This still could be the case, only time will tell.

Regarding the waiting list, it's been very frustrating. Using UNOS 1999 data, I calculated that it could take 16 years to get a kidney at my center. I just talked to my coordinator about it today. I had brought it up some time ago and she just got back with me. She spoke to the Transplant Director about the waiting times they quote. Example, 4 years (approx) for blood type O. It's quite complicated but basically, they quote averages for all of the southern California Organ Procurement Organization. The actual wait times can vary between centers. It would appear that I chose the worst one in all of So Cal (as far as # of patients per cadaveric transplant per year) when I got on the list 2 1/2 years ago. In retrospect, what I should have done was got listed at several centers. Most info about things like this seems to be closely guarded. I may have mentioned it, but I looked into a bunch of out-of -state centers and found some with shorter waiting times. I've begun the process for getting listed a one of them

[Guest guest]

Hi Again Marty;

I'm sorry to hear of the long wait for a transplant

there. I believe, in Canada, the list is

province-wide, I don't think there are multiple lists

here but I will look into it, just in case.

I've been telling J. about what's up with you and he

actually suggested you buy the equipment and start

doing hemo-dialysis at home. I thought that was pretty

far fetched but he assures me it's not and says if we

lived in the states and if he was on dialyisis, he'd

be looking into that option. He was especially

convinced of this after he heard about the fact that

you can't spend more than 4 hours at a time dialyzing

at a public facility there.

Anyway, you're my thin edge of the wedge with him

Marty. Seems as though if anybody gets him to look in

on this group it will be you, Pierre and the studies

posted. You are on the top of the list because you've

been through everything he's been through and more and

you're still slugging. Thanks for being there, your

example is inspiring.

>

_______________________________________________________

[Guest guest]

PS. Infections truly suck. I hope you're taking some

time off work to rest and get it all under control.

J's been on most of those drugs at one time or

another. -- they're a regular smorgasbrod of side

effects, I hope you're better soon.

>

>

[Guest guest]

Thanks Sam., that makes me feel good.

I think it would be cost-prohibitive for me to buy a machine and supplies. My salary has been cut in half. I plan on calling my insurance company to see if they would pay for it.

I neglected to report some good news recently. My last Kt/V was a whopping 1.51, where it should range from 1.30-2.20. This is the highest it's ever been. I don't want to get overly excited about it yet. For some unknown reason, my catheter was functioning bettern than normal for that run. The blood flow rate was 400ml/min with the lines reversed, where it normally only runs at 300 and occasionally 350. The higher the blood flow rate, the higher the dialysis adequacy.

Re: Sam

Hi Again Marty;I'm sorry to hear of the long wait for a transplantthere. I believe, in Canada, the list isprovince-wide, I don't think there are multiple listshere but I will look into it, just in case.I've been telling J. about what's up with you and heactually suggested you buy the equipment and startdoing hemo-dialysis at home. I thought that was prettyfar fetched but he assures me it's not and says if welived in the states and if he was on dialyisis, he'dbe looking into that option. He was especiallyconvinced of this after he heard about the fact thatyou can't spend more than 4 hours at a time dialyzingat a public facility there. Anyway, you're my thin edge of the wedge with himMarty. Seems as though if anybody gets him to look inon this group it will be you, Pierre and the studiesposted. You are on the top of the list because you'vebeen through everything he's been through and more andyou're still slugging. Thanks for being there, yourexample is inspiring.> _______________________________________________________

[Guest guest]

Sam,

Nope, no time off work. I'm very busy right now and I've missed so much time over the last couple of years already. I didn't really have any noticeable side effects except perhaps after the dose of gent. The next day at work I was nauseas all day and felt really run down.

Another thing that has been going on for a couple of weeks is what I believe to be pericarditis (inflammation of the fluid surrounding the heart. It hasn't been diagnosed by a dr, but I've had it before and at that time, it was diagnosed by a cardiologist. It seems to be getting better now. You feel a pain in the area of your heart that gets worse with breathing and certain movements. I seem to have gotten it with a chest cold. People who have uremia have a higher risk of getting it.

Marty

Re: Sam

PS. Infections truly suck. I hope you're taking sometime off work to rest and get it all under control.J's been on most of those drugs at one time oranother. -- they're a regular smorgasbrod of sideeffects, I hope you're better soon.> >

[Guest guest]

Hi Sam

Why would J. only consider this option is he was in the States? I've been

talking to my renal clinic about dialysis, and was under the impression that

home hemo was an option in Canada as well. I'm also considering Continuous

Cycling Peritoneal Dialysis (CCPD). Either option would leave my days free

to continue working (presumably).

Curtis in Ontario, Canada

Farr wrote:

> <snip>

> I've been telling J. about what's up with you and he

> actually suggested you buy the equipment and start

> doing hemo-dialysis at home. I thought that was pretty

> far fetched but he assures me it's not and says if we

> lived in the states and if he was on dialyisis, he'd

> be looking into that option. ...<End snip>

[Guest guest]

Hi Curtis;

To answer your questions:

J. would only consider the option of buying a dialysis

machine if we lived in the states because living here,

dialysis is free to him and in his experience, (unlike

some situations where there could be pressure to keep

dialysis time to 4 hours or less) he has had unlimited

time on the machine when he needed it.

We would never opt to spend thousands of dollars on a

dialysis machine unless it represented some sort of

cost saving. In Canada it doesn't. I'm still hoping

he'll be able to get a pre-emptive transplant before

he gets back to that point. He's done his time on

dialysis and unlike Marty, he isn't philosophical or

stoic about having to go back to it at all.

As for the medic alert bracelet; that's not a

practical solution for us right now. His meds are

changing regularly, often on a bi-weekly basis, the

engraver could never keep up. And then there are the

drug toxicity problems that he's dealing with, and the

sheer length of the list of meds -- his bracelet would

look more like a wrestler's belt buckle than a

discreet little ID bracelet.

They are a good solution for people on their own and

good insurance for times when you might be seperated

from your ID but I think medic alert bracelets should

be used as a back-up and with a condition that changes

all the time you really can't duplicate the

information you can get from a human being who has

been there in person. Doseages, reactions, habits --

all of these are important factors in determining what

exactly is happening in an emergency medical

situation.

This makes me think of something I thought about when

the nurse came on to ask why Marty didn't have a

fistula and to say American dialysis patients can go

for as long as they need on the machine --

Experts are fine when they're dealing with typical

situations. They know how to respond to this condition

as it appears in most of the population most of the

time, that's how they're trained.

I think the strength of a group like this is that it

allows for the exceptions to be brought up. We all

knew why Marty didn't have and couldn't have a

fistula. We all couldn't know the policy of most

dialysis centres but then from Marty's experience he

obviously felt pressure to keep his dialysis time down

and I think that feeling was valid. In this group we

often talk about the situations where the typical

thing didn't happen and how we dealt with it. (among

other things) and in a world where medical care is

based on the average and not the individual, I think

that's a very valuable thing.

I notice a lot of health care professionals dispatch

information s though they were setting things straight

and giving the definitive answer.

Definitive answers are different for everybody here.

For you, Curtis, buying a dialysis machine is an

option, for us it isn't -- space and cost make it too

much of an invasion. If we lived in the states and

were faced with $10,000. in medical bills every month,

it would be a different scenario. Of course, we would

be different people.

Thanks for your input. It is smart to wear a medic

alert bracelet, (or necklace) and I'm surprised at

myself for forgetting it. (J. had one for a while but

he literally wore the writing off it and anyhow, as

I've said, it's no longer relevant.)

good luck with the options you're looking at now.

s.

--- Curtis Morey wrote:

<HR>

<html><body>

<tt>

Hi Sam<BR>

<BR>

Why would J. only consider this option is he was in

the States? & nbsp; I've been<BR>

talking to my renal clinic about dialysis, and was

under the impression that<BR>

home hemo was an option in Canada as well. & nbsp; I'm

also considering Continuous<BR>

Cycling Peritoneal Dialysis (CCPD). & nbsp; Either

option would leave my days free<BR>

to continue working (presumably).<BR>

<BR>

Curtis in Ontario, Canada<BR>

<BR>

<BR>

Farr wrote:<BR>

<BR>

& gt; & lt;snip & gt;<BR>

& gt; I've been telling J. about what's up with you and

he<BR>

& gt; actually suggested you buy the equipment and

start<BR>

& gt; doing hemo-dialysis at home. I thought that was

pretty<BR>

& gt; far fetched but he assures me it's not and says

if we<BR>

& gt; lived in the states and if he was on dialyisis,

he'd<BR>

& gt; be looking into that option. ... & lt;End

snip & gt;<BR>

<BR>

</tt>

<br>

<!-- |**|begin egp html banner|**| -->

<table border=0 cellspacing=0 cellpadding=2>

<tr bgcolor=#FFFFCC>

<td align=center><font size= " -1 "

color=#003399><b>