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Medical Forum / Diseases and Disorders / Lupus / October 2007

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Roll Call to alt.support.lupus

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J - 18 Oct 2007 09:54 GMT
Roll Call to alt.support.lupus
Come in people and update the group.
How's it going, everyone.

Got questions? Someone will try to answer them for you.
J
Sherry - 18 Oct 2007 15:28 GMT
Hi J, good to see you posting!!!!!  I'm here.  Nothing new to report.

Hugs,
Sherry

> Roll Call to alt.support.lupus
> Come in people and update the group.
> How's it going, everyone.
>
> Got questions? Someone will try to answer them for you.
> J
J - 19 Oct 2007 11:16 GMT
> Hi J, good to see you posting!!!!!  I'm here.  Nothing new to report.
>
> Hugs,
> Sherry

Hello Sherry,
Waving hello back to you, with my left arm. :-)
Hugs
J
janers - 18 Oct 2007 15:29 GMT
I am here, fighting spurs in my "right foot" but finally got an injection now to wait out the
soreness.  DANG them injections make you sweat bullets and tears do roll.  I also am fighting a
ruptured disk problem and old scar tissue but PT is working well with that and water PT.  My
neurosurgeon says NO surgery you are too high risk for problems and if I do it, I would have to have
mylograms and that is high risk for me with low wbc's.  then he says IF I get to a point where all
daily living is incapcitating me, then he would do surgery but not until then.   so learn to mange
the pain and hope that numbness and pain don't get worse.  SO far 4 blocks, PT , Water and
injections in the foot are holding on.

NOW aren't you glad you asked?  hehe.
Did the walk a thon at the mall, and raised over $500.00 my own. Good generous friends and family
gave.  Got ORANGE shirts.  They are cool for pumpkins but will do fine.
OH and our chapter is going to be offering all types of clothing on line. DID any one notice that
www.lupus.org has a new shop with clothing?   Our chapter is not up yet but it all will have like
lupus now the LFA logo on them.  some are very nice but we will have a better pick.  I worked on it
myself.. so watch for my introduction.

I know quit pushing haha.

HOW you "J"  you drop a line and then off?  What you up too?
janers
J - 19 Oct 2007 11:15 GMT
> I am here, fighting spurs in my "right foot" but finally got an injection now to wait out the
> soreness.  DANG them injections make you sweat bullets and tears do roll.  I also am fighting a
[quoted text clipped - 17 lines]
> HOW you "J"  you drop a line and then off?  What you up too?
> janers

Typing as little as possible, flares up my elbow and shoulder problems.
You're one tough lady doing the walks with your foot problems.
Orange sounds lovely.

I only see 3 clothing  items at www.lupus.org
Jen was posting here. I just checked her blog and her husband says sun protective clothing too expensive
or too ugly.
That's part of why I posted freecycle.org in case there's some ( sun protective clothing ) in their
neighborhood
I think she was last on the arthritis newsgroup or http://lupusfamily.com if you come up with something
good for her.

Take care of you, lady.

I'll watch for your announcement about your clothing picks.
J
Ruth Tay - 18 Oct 2007 16:21 GMT
Still  reading   a l t  each day.  Glad to see you back  J.  Nothing new
to report.  Lupus  is same old  same old....             ruth
> Roll Call to alt.support.lupus
> Come in people and update the group.
> How's it going, everyone.
>
> Got questions? Someone will try to answer them for you.
> J
J - 19 Oct 2007 10:38 GMT
> J <russfer@ano.non>
> wrote: > Roll Call to alt.support.lupus
>
> Still  reading   a l t  each day.  Glad to see you back  J.  Nothing new
> to report.  Lupus  is same old  same old....             ruth

Good to hear from you, Ruth.
Still got the menagerie?
Hugs
J
Ruth Tay - 19 Oct 2007 20:06 GMT
Hi  J        We still have  9 wild turkeys flying on the roof and
looking in.  Down to about 10 deer because we have a
mountain lion that is around culling out the herd.  We think
the lion got  all the jackrabbits.  Wish there was something
new to report on Lupus.  Taking Vitamin D  has really helped.
Has anyone had a heart valve replacement?  My aortic
valve is shot and I wonder if the lupus would attack a new
one................ruth

> > J <russfer@ano.non>
> > wrote: > Roll Call to alt.support.lupus
[quoted text clipped - 6 lines]
> Hugs
> J
J - 22 Oct 2007 09:51 GMT
> J <russfer@ano.non>wrote:
>
[quoted text clipped - 6 lines]
> valve is shot and I wonder if the lupus would attack a new
> one................ruth

Hi Ruth,
Sorry I'm late. I typed too much and injured my arm, so had to take a break.

re menagerie: law of the jungle - big animals eat smaller animals/birds.
I have troulbe with that. If a cat eats a mouse, OK, but if it eats a bird, not
ok.
If a dog eats a squirrel, okay, sort of, but not okay if it eats a cat.
See what I mean? I don't make sense.
I still enjoy hearing about your menagerie.

I only know of a few who've had heart surgery, so I'm not a good one to ask.
Apparently there's 2 types of valves, explained here
<
http://www.sts.org/sections/patientinformation/valvesurgery/aorticvalve/index.html

mechanical valves and biological valves.
Under "risks" they don't mention previous heart surgery or the hospital.

This UK web page does
http://heartsurgery.healthcarecommission.org.uk/about-aortic-valve.aspx
If I click on any of the hospitals, it gives info specific to that hospital.
It also gives a general blurb, which appears on each hospital's page.
As folows:

Statistics calculated from patients being treated for the first time.

Factors such as ill health, increased age and lifestyle can affect a patient's
chance of surviving a major operation. When we calculate the expected rates of
survival we take these risk factors into account. Find out more about how
expected rates of survival are calculated.

What is the expected survival rate?

Factors such as ill health, increased age and lifestyle can affect a patient's
chance of surviving a major operation. Examples of things that increase the risk
of not surviving a heart operation are whether a patient has had heart surgery
before or whether a patient has long term lung disease. When we calculate the
expected rates of survival we take these risk factors into account The expected
range of rates of survival shown in the white bars on each graph above reflects
the overall risk of patients treated at the hospital. Some hospitals treat more
high-risk patients than others and as a consequence of this the average expected
survival rate for these hospitals is lower than other hospitals.

The main way of taking risk factors into account when calculating the expected
rate of survival is by using what is known as the EuroSCORE method. This is a
method of predicting the chances of dying during or within 30 days after
undergoing heart surgery. This scoring system was based on information from many
patients across hospitals in 8 European countries. In the last four years, heart
surgery in the UK has tended to be better than EuroSCORE predicts so we have
also calculated the expected rates of survival by making an adjustment to the
scoring based on the current UK only information. The adjustment for UK
performance means that more people are expected to survive and is therefore a
tougher comparison. Click on the links above to see the different expected
survival rates.

More information about how the expected rates of survival are calculated is
included in about this site.
Data Quality

The data in this unit are 84% complete. View this in comparison with other
units.
How is the survival rate measured?

This records the number of patients who survive the operation for at least 30
days after surgery and are successfully discharged from hospital afterwards.
---------------------------------------------------------------------------------

It doesn't say anything about (risks of) one type of valve vs the other.
Some Americans say to go to hospitals that have done many of the XXXX procedure
(XXX being whatever procedure).
The downside is if it's farther away, for friends or relatives to visit , or go
back and forth for rehab and rechecks.

I guess I would ask such hospitals/surgeons:
How many have you done this year and last year?  And will you be doing the
surgery or supervising the surgery?
What's your rate of short term success (alive 30 days later) and long-term
(alive 2 or more years later?
Which value are you planning to use. Please show me. And tell me the advantages
over other ones or why one is better for me than some of the others.
Have you done people with my risk factors? (and discuss them).
Is there a better time (of year) to have such surgery? (re: concern about
infections, pneumonia in hospitals)

It's not unreasonable for you to ask questions before deciding which
surgeon/hospital will do the surgery.
Lots of heart surgeries are done every year.  Most turn out very good.
Best of luck. Let us know before you go, so we can cross our fingers, light
candles, send prayers and good wishes.
Hugs
J
Andy - 22 Oct 2007 11:44 GMT
In message <471C649C.6FFFB2A@execulink.com>, J <russfer@ano.non> wrote
[]
>This UK web page does
>http://heartsurgery.healthcarecommission.org.uk/about-aortic-valve.aspx
>If I click on any of the hospitals, it gives info specific to that hospital.

This came about, I understand, following the release of preliminary data
that was flawed - some hospitals and some surgeons showed as having a
low survival rate. This was actually due to two causes: (1) a very few
weren't all that good (2) some got all the difficult cases. The revised
statistics take account of cause 2 and made it possible to identify
which surgeons needed more training.
Signature

Andy Taylor [Editor, Austrian Philatelic Society; Chair, N E Lupus Group]
For Austrian philately visit <URL:http://www.austrianphilately.com>
For Lupus visit <URL:http://www.northeastlupus.org.uk>
For this'n'that see <URL:http://www.kitzbuhel.demon.co.uk/>


Lori - 22 Oct 2007 23:32 GMT
Hi all! I've been reading this group for some time, but I don't write
all that often. Lately I've had a lot of problems with my hip and knee
joints and I think my pleurisy might be coming back. I've also been
exhausted lately because I'm getting ready to move to Stillwater,
Oklahoma soon. If anyone knows of a good rhemy in the Oklahoma City,
Tulsa, Stillwater area, I'd love to have their name.
-Lori
Sherry - 23 Oct 2007 01:22 GMT
Lori,
Moving is never fun and is always lots of work.  Sorry to hear that your
hips and knees are giving you fits. (those are big complaints of mine) and
hope the pleurisy isn't coming back.

We do have a member that is in the Oklahoma City area so hopefully she will
see your post and reply.  If I don't see a response from her tomorrow I will
email and ask her to check the group for your post.

Hugs,
Sherry

> Hi all! I've been reading this group for some time, but I don't write
> all that often. Lately I've had a lot of problems with my hip and knee
[quoted text clipped - 3 lines]
> Tulsa, Stillwater area, I'd love to have their name.
> -Lori
Cindy - 24 Oct 2007 13:24 GMT
Lori, Your moving to Stillwater...Oh my...Well I guess that is
okay...LOL..Being a Sooner fan, that is a little too  far north. I am from
Moore..Just South of OKC...
I have a great Rhuemy...Rhonda (also a huge OU fan) also uses him....
I don't have Lupus, just OA and FM..but my friend has Lupus and sees him
also.
He is Dr.Willis and is in the City..He is part of the McBride Clinic. I know
that he sees patients in OKC and there is an office in Norman. Also I
believe there is an office in Far North OKC, but not sure if Dr. Willis goes
there or not.
McBride Clinic is for Orthopedics and Arthritis only.
I hope this helps..and Welcome to Oklahoma even if you are going to Orange
and Black country and not Crimson and Cream  ;)
Cindy

> Hi all! I've been reading this group for some time, but I don't write
> all that often. Lately I've had a lot of problems with my hip and knee
[quoted text clipped - 3 lines]
> Tulsa, Stillwater area, I'd love to have their name.
> -Lori
Lori - 24 Oct 2007 17:51 GMT
> Lori, Your moving to Stillwater...Oh my...Well I guess that is
> okay...LOL..Being a Sooner fan, that is a little too  far north. I am from
[quoted text clipped - 18 lines]
> > Tulsa, Stillwater area, I'd love to have their name.
> > -Lori

Thanks so much for the info Cindy!
I won't be wearing any orange any time soon. My heart is purple- I
went to K-State until I got sick and had to drop out. But I'm used to
having a dr from a rival team- my last one went to KU!
-Lori
J - 29 Oct 2007 16:33 GMT
> Hi all! I've been reading this group for some time, but I don't write
> all that often. Lately I've had a lot of problems with my hip and knee
[quoted text clipped - 3 lines]
> Tulsa, Stillwater area, I'd love to have their name.
> -Lori

Good luck finding a doctor Lori,
Hope the tips helped you.
Gets lots of rest. Moving is exhausting.
Hugs
J
Timothy Luders - 19 Oct 2007 05:55 GMT
> Roll Call to alt.support.lupus

Still reading daily. DW is waiting for a kidney. Younger son is donating if
all works out. Maybe this December.

Signature

Timothy

J - 19 Oct 2007 10:14 GMT
> > Roll Call to alt.support.lupus
>
> Still reading daily. DW is waiting for a kidney. Younger son is donating if
> all works out. Maybe this December.

Sending positive thoughts for you all.
J
Beverley - 24 Oct 2007 14:46 GMT
Checking in once in a while. Life is often a blur. Trying to live without my
husband. Applied for widow's disability and was turned down. I guess I'm
going to have to work! I see a lawyer today but the disability payment
really is not enough to cover the basic expenses of this house.

My new pound "puppy" is finally doing well.
Bev

> Roll Call to alt.support.lupus
> Come in people and update the group.
> How's it going, everyone.
>
> Got questions? Someone will try to answer them for you.
> J
J - 29 Oct 2007 16:33 GMT
> Checking in once in a while. Life is often a blur. Trying to live without my
> husband. Applied for widow's disability and was turned down. I guess I'm
[quoted text clipped - 3 lines]
> My new pound "puppy" is finally doing well.
> Bev

I'm so sorry for your loss, Bev. Unimaginable.
Cute puppie. I'm glad it's working out.
How'd you make out with the lawyer?
It's such a lovely home. I suppose a bed and breakfast wouldn't be allowed?

If Deme (sp?) could find you the next hot with kids, maybe you start a webpage
and would sell like hotcakes to kids. Some people become millionaires that way
or just make good money to live on.
Hugs
J
 
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