Hi! & Can you help?

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Hi! & Can you help?

Postby Jenni » Thu Aug 19, 2004 7:34 pm

Hello everyone!
my name is Jenni and I'm a first year student at the university of Sheffield. I'm currently undertaking a project named Health and the Individual- coping with Renal Failure. Its a subject very close to my heart, as my late grandmother was a sufferer, and I was part of her care network.
Part of my project is some quantitative research, which I've put in the form of a questionnaire. I toyed with the idea of pming you a copy, but decided not to. (I dont want to bug you with junk mail!) So I've decided to post a copy here, and if anyone feels they would like to answer, either pm me your answers, or email me on soa03jo@sheffield.ac.uk. I'll be happy to answer any queries you have, and can assure you that everyone will remain anonymous.
Thanks so much for your time, and keep up the good work! This forum is great! x
Jenni
 
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Postby Jenni » Thu Aug 19, 2004 7:46 pm

Health and the Individual

Please answer as many questions as you can. Any that do not apply, or you do not wish to answer, please leave blank. Thank you for your co-operation.
1) Sex (M/F)

2)Age

3)Location (e.g. U.K)

4)At what age was your renal condition diagnosed?

5)Did you have any other conditions before this?

6)Have any family members been diagnosed with kidney problems?

7)In your opinion, what aspect of your life has been most affected by
your condition?

8)In your opinion, what is the most valuable form of support you have received?

a)Medical staff and formal care
b)Family and friends (informal carers)
c)Support groups (e.g. British Kidney Patient Association.)
d)Internet forums and chat rooms (e.g.Kidney Patient Bulletin Board

Thanks again for your co-operation,
J.O'Sullivan
Jenni
 
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Postby JMan » Thu Aug 19, 2004 10:10 pm

[quote="Jenni"]Health and the Individual

Please answer as many questions as you can. Any that do not apply, or you do not wish to answer, please leave blank. Thank you for your co-operation.
1) Sex (M/F)
M

2)Age
25 -30

3)Location (e.g. U.K)
UK

4)At what age was your renal condition diagnosed?
5

5)Did you have any other conditions before this?
No

6)Have any family members been diagnosed with kidney problems?
No

7)In your opinion, what aspect of your life has been most affected by
your condition?

In 2 words: psychological and physical

8)In your opinion, what is the most valuable form of support you have received?

a)Medical staff and formal care
Some. A few NHS (minority) stand out from the general mass
b)Family and friends (informal carers)
some. Family in paticular. few close friends. (AND Web network)
c)Support groups (e.g. British Kidney Patient Association.)
BKPA, NKF ( http://www.kidney.org.uk on occaision others.
d)Internet forums and chat rooms (e.g.Kidney Patient Bulletin Board

Originally alt.support.kidney-failure, now that and various others.

[/quote]
Last edited by JMan on Fri Aug 20, 2004 9:23 am, edited 1 time in total.
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Postby debbie » Fri Aug 20, 2004 7:36 am

Hi Jenni,

1) Sex (M/F) Female

2)Age 30 (shhhhh!)

3)Location (e.g. U.K) uk

4)At what age was your renal condition diagnosed? 20

5)Did you have any other conditions before this? no

6)Have any family members been diagnosed with kidney problems? no

7)In your opinion, what aspect of your life has been most affected by
your condition? Freedom

8)In your opinion, what is the most valuable form of support you have received?

a)Medical staff and formal care
could count on one hand the medical staff who really care.
b)Family and friends (informal carers) Best form of support, especially immediate family
c)Support groups (e.g. British Kidney Patient Association.) Haven't used them other than reading info leaflets etc
d)Internet forums and chat rooms (e.g.Kidney Patient Bulletin Board
Best form of advice, nothing like other people who've been there and done it.
debbie
 
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Answer!

Postby R30 » Fri Aug 20, 2004 8:21 am

Hello Jennie
1. Sex: Female
2. Age: 34
3. Location: UK, Cheltenham
4. At what age was your renal condition diagnosed? 28
5. Did you have any other conditions before this?
Was diagnosed with high blood pressure when I was 22
6. Have any family members been diagnosed with kidney problems?
My aunt (father's side) has been diagnosed with IgA
7. In your opinion, what aspect of your life has been most affected by
your condition?
I think this would have to be the psychological aspect, and the physical
8. In your opinion, what is the most valuable form of support you have
received?
This would probably be some of my renal team, and the renal
psychologist I see. Also my family - they have given my support
without question or judgement - I cannot say the same for my
"friends" unfortunately.
Also, I have to include this board - it is invaluable. You cannot beat
liaising with people who have been through the same thing.
Thanks, Ruth
R30
 
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Postby Andy » Sun Aug 22, 2004 3:23 pm

Health and the Individual

Please answer as many questions as you can. Any that do not apply, or you do not wish to answer, please leave blank. Thank you for your co-operation.
1) Sex (M/F) Female

2)Age 18

3)Location (e.g. U.K) uk

4)At what age was your renal condition diagnosed? 16

5)Did you have any other conditions before this? had it through meningitis

6)Have any family members been diagnosed with kidney problems?no

7)In your opinion, what aspect of your life has been most affected by
your condition?
before transplant my social life was a bit complicated but now it is fine as tablets do the trick

8)In your opinion, what is the most valuable form of support you have received?

a)Medical staff and formal care
not from kidney staff but other nurses who cared for me

b)Family and friends (informal carers)
i know it is there when i need it and if i want it

c)Support groups (e.g. British Kidney Patient Association.)
at first a bit but nothing any more

d)Internet forums and chat rooms (e.g.Kidney Patient Bulletin Board

i rely on this lots and lots. dont have any other way of support, get all my question answered here!!
Andy
 
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Hi, Jenni

Postby amanda in CA » Mon Aug 23, 2004 9:56 am

here are my answers to your questions:

1) Sex (M/F) Female

2)Age 41

3)Location (e.g. U.K) US (UK citizen)

4)At what age was your renal condition diagnosed? 26

5)Did you have any other conditions before this? No

6)Have any family members been diagnosed with kidney problems? No

7)In your opinion, what aspect of your life has been most affected by
your condition? My psychological outlook on life.

8)In your opinion, what is the most valuable form of support you have received? My family and this Bulletin Board

a)Medical staff and formal care
b)Family and friends (informal carers)
c)Support groups (e.g. British Kidney Patient Association.)
d)Internet forums and chat rooms (e.g.Kidney Patient Bulletin Board

[/b]
amanda in CA
 
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Postby Rachel in NY » Mon Aug 23, 2004 2:16 pm

Please answer as many questions as you can. Any that do not apply, or you do not wish to answer, please leave blank. Thank you for your co-operation.
1) Sex (M/F) Female

2)Age 16

3)Location (e.g. U.K) NY, USA

4)At what age was your renal condition diagnosed? 13ish

5)Did you have any other conditions before this? type 1 diabetes, no kidney issues

6)Have any family members been diagnosed with kidney problems? I have an uncle waiting for a tx, completely unrelated tho. We don't have any 'familial or genetic disease'.

7)In your opinion, what aspect of your life has been most affected by
your condition? Honestly, everything. My social life, my normal life, my goals in life, my outlook in life, the nitty gritty day to day. It has all changed.. thou not necessarily a bad thing. It's just all changed!

8)In your opinion, what is the most valuable form of support you have received? I had a close family member and friend that have been my 'rocks' in bad times, as well as this board for all my ventings. Some hospital staff have been great as well. I loved some of my nurses, and my dr. was great to talk to as well.

a)Medical staff and formal care
b)Family and friends (informal carers)
c)Support groups (e.g. British Kidney Patient Association.)
d)Internet forums and chat rooms (e.g.Kidney Patient Bulletin Board
Last edited by Rachel in NY on Wed Aug 25, 2004 5:58 pm, edited 1 time in total.
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Postby oldborris » Tue Aug 24, 2004 10:16 am

Posted: Thu Aug 19, 2004 7:46 pm Post subject:

--------------------------------------------------------------------------------

Health and the Individual

Please answer as many questions as you can. Any that do not apply, or you do not wish to answer, please leave blank. Thank you for your co-operation.
1) Sex (M/F) M [I claim the authority of my birth certificate for this piece of exclusive information. Remember, you read it here first].

2)Age 79 [but could pass for 21 with a paper bag over my head]

3)Location (e.g. U.K) London UK

4)At what age was your renal condition diagnosed? 73

5)Did you have any other conditions before this? No but I was diagnosed at more or less the same time with osteoporosis and emphysema, and a few months ago, with a blocked heart valve. I'm probably held together just now with bits of increasingly fraying string.

6)Have any family members been diagnosed with kidney problems? As a virtual orphan, I wouldn't know.

7)In your opinion, what aspect of your life has been most affected by
your condition? Limitation on spontaneous travel

8)In your opinion, what is the most valuable form of support you have received? None, really. And, apart from occassionally requiring physical support, which I have not always got when needed] I am not sure that I have ever needed, or would value, or would know what to do with, any other kind of support. Perhaps this is because, having spent most of my life alone [but not, by any means, lonely], I have learned to be independent.

a)Medical staff and formal care: Well, of course, Without this I would not be alive.
b)Family and friends (informal carers) No family. And as I grow older [and I do - the big 80 next year!] my friends have adopted the annoying habit of either moving out of London and into the country [what has happened to Dr. Johnson's adage that he who is tired of London is tired of life?] or, more irritatingly, dying. Bloody cheek!
c)Support groups (e.g. British Kidney Patient Association.) None. But then I have not asked.
d)Internet forums and chat rooms (e.g.Kidney Patient Bulletin Board. I don't look to these for support as such [i.e. "there, there" it will all be alright" etc] but as a valuable source of shared information and an opportunity to offer my widow's mite of experience.
oldborris
 
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Postby Lorna » Tue Aug 24, 2004 6:52 pm

Health and the Individual

Please answer as many questions as you can. Any that do not apply, or you do not wish to answer, please leave blank. Thank you for your co-operation.
1) Sex (M/F) Female

2)Age 35

3)Location (e.g. U.K) Aberdeenshire, Scotland

4)At what age was your renal condition diagnosed? 29

5)Did you have any other conditions before this? Diabetes, kidney failure brought on by pregnancy

6)Have any family members been diagnosed with kidney problems? No

7)In your opinion, what aspect of your life has been most affected by
your condition? Whole life has been affected by lack of energy/tiredness

8)In your opinion, what is the most valuable form of support you have received?

a)Medical staff and formal care
b)Family and friends (informal carers)
c)Support groups (e.g. British Kidney Patient Association.)
d)Internet forums and chat rooms (e.g.Kidney Patient Bulletin Board I have a lot of support from family and real friends (and I've certainly found out who my REAL friends are) and from medical staff, but I would consider most valuable support from this board and chat room, ie from people who have been through kidney failure themselves and know best what I have been through/am going through.

Thanks again for your co-operation,
J.O'Sullivan
Lorna
 
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Postby LadySycamore » Tue Aug 24, 2004 10:59 pm

1) Sex (M/F) Female

2) Age: 34

3) Location (e.g. U.K) Philadelphia, PA USA

4) At what age was your renal condition diagnosed? Age 31

5) Did you have any other conditions before this? Type 2 Diabetes (diagnosed at age 22), Obesity (overweight since age eight).

6) Have any family members been diagnosed with kidney problems? On my Dad's side of the family.

7) In your opinion, what aspect of your life has been most affected by
your condition?

a) Physical: Secondary hyperparathyroidism and *possible* Rheumatoid arthritis (looking into it) has limited my movement and ability to carry on daily chores, weakened muscles from lack of exercise due to the body pain. Also, diabetic neuropathy, weight gain, lack of hydration from the dialysis, acne and other physical issues. Low energy due to anemia.
b) Mental: Concentration has been scattered which keeps me from further learning new things as well (and as quickly) as before the kidney failure.
c) Emotional: Had to seek therapy for 4 months to settle some issues that I had regarding chronic illness, low self esteem, no longer comfortable in own skin.

8)In your opinion, what is the most valuable form of support you have received?

a)Medical staff and formal care--none really (at least, not in the way that I needed).
b)Family and friends (informal carers)--Mainly my long term boyfriend of 5 years.
c)Support groups--Nothing outside of the internet (so far).
d)Internet forums and chat rooms--This board, Dialyze.org, Brumley board.

*edited*
Dialyze.org:
http://dialyze.org/forums/index.php
Chatroom, Support, Advocacy and more!

Dialyze.org MemberGroup on MSN:
http://groups.msn.com/Dialyze-orgMember ... sages.msnw
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Postby Pam » Thu Aug 26, 2004 3:26 am

Health and the Individual

Please answer as many questions as you can. Any that do not apply, or you do not wish to answer, please leave blank. Thank you for your co-operation.
1) Sex (M/F) Female

2)Age 44 :roll:

3)Location (e.g. U.K) Illinois, USA

4)At what age was your renal condition diagnosed? 12

5)Did you have any other conditions before this? No

6)Have any family members been diagnosed with kidney problems? Yes, my younger sister was diagnosed with the same disease as I was (Medullary Cystic Disease) although we have no evidence of it anywhere else in our family history.

7)In your opinion, what aspect of your life has been most affected by
your condition? Social life-I never really fit in in school and did not get to do all the "normal" adolescent things. Physical-I now have a lot of problems caused by the tx drugs and of course, old age! :wink:

8)In your opinion, what is the most valuable form of support you have received? My family-also my faith in God is tremendously important to me. I couldn't have made it this far without it.

a)Medical staff and formal care-Not a lot since my tx was so long ago. I feel that they kind of are tired of me at times. There is one tx nurse who has been a person I feel I can count on, though.
b)Family and friends (informal carers) My family hasn't always understood my condition and what I was/am going through, but they have been my strongest champions.
c)Support groups (e.g. British Kidney Patient Association.) This board! It's the first place I have really felt "at home" as everyone knows where you're coming from, has advice and will lend an ear if you need to vent!Internet forums and chat rooms (e.g.Kidney Patient Bulletin Board) Again, this board and the Quarter Century Club I belong to (for those who have had their tx for 25 years or more)
Best Wishes,
Pam
32 yr cadaver transplant recipient, now on peritoneal dialysis with the help of Audrey, my Homechoice machine... as of 4/3/09
Romans 8:28
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