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Author Topic: question for transplant recipients  (Read 6121 times)
cariad
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What's past is prologue

« on: July 25, 2011, 09:08:00 AM »

All right, IHD transplantees, I have a question and would appreciate the feedback.

I am considering contacting my M.S. advisor and telling her that I would like to pursue my Ph.D in anthropology. It would be about transplant, perhaps the only subject that I will ever feel truly expert in. One of the many issues I would like my advisor's help with is devising a sound research study, which means that at the moment I cannot even tell you what the research question would be. I do know that I would want to interview transplant patients, either in person or over the phone, email may work if that is the only way a person would feel comfortable. I would not be taking anything from the forum (at least not without the fully informed consent of the author, but I don't want to get too far ahead of myself here).

I have read some of the anthropology about transplant recipients, and it is bad. Like "WTF are you talking about?!" bad. I had one cultural professor encourage me to write a rebuttal in a publication, but I just did not have the time nor energy back then to bother. I would hope that with a bit of assistance from professors, I could write something that would give a fuller and more realistic view of this population.

This is really difficult to ask, but I would love to know if there is anyone here who thinks that he or she would be willing to talk to me should everything fall into place. (And it may not fall into place - but recruitment is arguably the most difficult part of research, so I want to be sure I am not just kidding myself here.) Of course, saying you would consider it now is *not* any sort of binding agreement you are entering into. The nice thing about research, in America at least, is that you can change your mind at any stage. Before I invest a lot of time and energy into a lit review and discussions with professors, I would like some indication that there are people out there who would feel comfortable talking to me. Please PM me if you'd rather not reply in the public of the forum. Thanks for reading! Any other thoughts on whether or not I should pursue Ph.D candidacy are also welcome. If I am going to do this, I would want to start this coming term, only weeks away.... Gah!
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monrein
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« Reply #1 on: July 25, 2011, 09:54:35 AM »

Cariad, I would be happy to participate although of course some of the issues transplantees face are different for Canadians.  I also think that you would do a fine job of the whole thing and I encourage you to pursue it.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
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« Reply #2 on: July 25, 2011, 09:58:10 AM »

I'd be willing to talk if you need me.
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Diagnosed with FSGS April of 1987
First Dialysis 11/87 - CAPD
Transplant #1 10/13/94
Second round of Dialysis stated 9/06 - In Center Hemo
Transplant  #2 5/24/10
edersham
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« Reply #3 on: July 25, 2011, 12:25:09 PM »

I'm all in.

Ed
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willowtreewren
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« Reply #4 on: July 25, 2011, 03:51:48 PM »

Count Carl it!  :thumbup;
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
kellyt
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« Reply #5 on: July 25, 2011, 04:32:11 PM »

I'll help.  :) 
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
kellyt
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« Reply #6 on: July 25, 2011, 04:33:46 PM »

I'll help.  :)

Of course, you'll have to come to Vegas in October if you want to interview me!   :P
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Chris
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« Reply #7 on: July 25, 2011, 05:01:55 PM »

Cariad, you can count me in. But I think you'd know I would.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
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No two day's are the same, are they?
natnnnat
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« Reply #8 on: July 25, 2011, 06:22:36 PM »

 :bandance;
I was wondering if you would consider study and I remember loving your anthropology of transplantees idea when I first heard it. Yes yes yes Cariad, yes, this needs to be written about. 
I will ask Gregory if he is interested, you could skype him, rather than spending a fortune on phone calls. 
Let me know if I can help with anything else, PhD-wise.  Maybe I can flick you some literature? 
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
RichardMEL
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« Reply #9 on: July 25, 2011, 07:32:57 PM »

Definitely happy to participate if I can (you can interview me in my vegas suite if you like  >:D >:D >:D >:D >:D or maybe in the Hooters pool?  :rofl; :rofl; :rofl;).

Seriously though maybe you could use one of the internet based tools like surveymonkey or something like that to get responses to questions and stuff? That might help with such a diverse group of folks around the world? Anyway just a thought :)
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #10 on: July 25, 2011, 10:02:13 PM »

I am all in!!! Do the damn thing and go back to school! I support you 100%! xoxo -R

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
jersey girl
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« Reply #11 on: July 26, 2011, 05:42:32 AM »

Count me in!  Good luck!
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cariad
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What's past is prologue

« Reply #12 on: July 26, 2011, 10:06:55 AM »

Oh, my IHD darlings, thank you so much!!! I have sent off a quick email to my advisor, but I fear she may be in South Africa, cut off from modern technology. I really want to have the research question and design talk with her straight away! I am going to contact the department chair to see if he knows her whereabouts.

Nat, you are such a dear! I would love articles as I lost my library access years ago. As soon as I know what area I intend to investigate, I will let you know. Of course, I should probably read anything and everything that has even a hint of transplant anthropology about it. Citations, the other great obstacle, and such a daunting one at that.

Richard, never heard of surveymonkey. Sounds like something I must familiarize myself with, and soon. I have, however, heard of Hooters. Way to test my loyalties - will it be feminism or academia that wins out? You all will have to come to Vegas to see for yourselves, because if I set foot in a Hooters, I will deny it forever after!  :rofl; :rofl; :rofl;

Kelly, I am soooo coming to Vegas. No worries there.  :2thumbsup;

Thank you, one and all. I hope I can pull everything together in the next month, including those oh so fun student loans. I am still paying on my last one, which does present a complication, but not an insurmountable one. I will update as I progress.  :-*
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
natnnnat
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« Reply #13 on: July 26, 2011, 05:33:31 PM »

Quote
Of course, I should probably read anything and everything that has even a hint of transplant anthropology about it.

see personal message. xn
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
kellyt
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« Reply #14 on: July 26, 2011, 06:39:09 PM »

Oh, my IHD darlings, thank you so much!!! I have sent off a quick email to my advisor, but I fear she may be in South Africa, cut off from modern technology. I really want to have the research question and design talk with her straight away! I am going to contact the department chair to see if he knows her whereabouts.

Nat, you are such a dear! I would love articles as I lost my library access years ago. As soon as I know what area I intend to investigate, I will let you know. Of course, I should probably read anything and everything that has even a hint of transplant anthropology about it. Citations, the other great obstacle, and such a daunting one at that.

Richard, never heard of surveymonkey. Sounds like something I must familiarize myself with, and soon. I have, however, heard of Hooters. Way to test my loyalties - will it be feminism or academia that wins out? You all will have to come to Vegas to see for yourselves, because if I set foot in a Hooters, I will deny it forever after!  :rofl; :rofl; :rofl;

Kelly, I am soooo coming to Vegas. No worries there.
  :2thumbsup;

Thank you, one and all. I hope I can pull everything together in the next month, including those oh so fun student loans. I am still paying on my last one, which does present a complication, but not an insurmountable one. I will update as I progress.  :-*

 :bandance;
Logged

1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
cariad
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What's past is prologue

« Reply #15 on: July 27, 2011, 01:07:12 PM »

Yay! Finally some response from a prof willing to discuss research questions. I don't know if my former adviser is too overwhelmed with work and travel to respond, or if my email somehow went to her junk file, but I have not heard from her. Another prof said he was so desperately backlogged for the rest of summer, he cannot meet until September. I have set up an appointment with a prof specializing in medical anthro and biological anthropology. No idea if the two can come together, as I assumed it would be sociocultural. I hope he can give me some direction, because I am truly at sea, but looking forward to determining if I can pull this off.

Onward!
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
RichardMEL
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« Reply #16 on: July 29, 2011, 12:48:34 AM »

by popular demand I am happy to relocate the question and answer session to the desert rose pool  :rofl; :rofl; :rofl; :rofl;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #17 on: July 30, 2011, 01:09:11 AM »

Yay! Finally some response from a prof willing to discuss research questions. I don't know if my former adviser is too overwhelmed with work and travel to respond, or if my email somehow went to her junk file, but I have not heard from her. Another prof said he was so desperately backlogged for the rest of summer, he cannot meet until September. I have set up an appointment with a prof specializing in medical anthro and biological anthropology. No idea if the two can come together, as I assumed it would be sociocultural. I hope he can give me some direction, because I am truly at sea, but looking forward to determining if I can pull this off.

Onward!


This is exciting!! yay!!!  :clap;

xo,
R
Logged

Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
cariad
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What's past is prologue

« Reply #18 on: August 03, 2011, 08:46:37 AM »

Update!

I met a new prof today and we sat down and talked. It was scary, but I had jotted down some ideas. He said that if I could enter into this with 3 main themes, I could make a go of it. He also said that I should not try to do any of my own research for at least the first year, and he mentioned next summer as the ideal time to start. OK, that's fair. So I was way premature in asking all of you, but I will certainly re-ask when it's closer to go time.

Here are the themes of mine that he liked:
-obesity and transplant (though I think he did not understand it as a social value, which is how I see it.)
-Debt, reciprocity, and transplant
-Mental health and transplant

Then he suggested a school of thought called 'embodiment' and transplant, and how that might be altered, or perceived as being altered, by transplant. That one sounds complex and terribly difficult, but it deals in the brain's connection with the physical body, and I love brain studies. I am up for that challenge.

I told him that really my only entry into transplant was renal, and he said that was fine, and that there are probably different perceptions between a kidney transplant and a heart transplant. I then told him that I heard on NPR yesterday that they have implanted a fully artificial, mobile heart into a man in Britain. The narrator said "He is the first person walking around Britain without a human heart" and the prof gave this deep, knowing laugh that social scientists emit whenever they've just encountered the best piece of data imaginable. I said "I know. I could write an entire linguistics dissertation on that phrase alone."

At the end, he said "Well, this topic has legs. I am excited for you. I think you should pursue it." So, now it's a mad dash to gain readmittance and get myself enrolled in courses and apply for student loans. My sweet baby has a birthday this week and we don't even have a cake. I am so very frazzled. House is teetering on the brink of condemned status, and Aidan is having a few friends to spend the night over the weekend. Everything is poised at the eleventh hour right now. Must focus!
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
jbeany
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« Reply #19 on: August 03, 2011, 10:08:25 AM »

I missed this with my complications!  Count me in on the interview list!
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Deanne
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« Reply #20 on: August 03, 2011, 12:13:50 PM »

I know it'll take a while before you're ready for your research. By then you should be albe to count me in (being listed now). In the meantime, if you want to include before/after information, I'll be glad to answer questions that pertain to the listing process.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
cariad
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What's past is prologue

« Reply #21 on: August 03, 2011, 08:22:43 PM »

Thanks so much, jbeany! I am sorry to hear of your complications - sounds utterly terrifying. I'm glad and relieved that it's behind you.

Deanne, that is so nice. I would like to concentrate on the evals for part of it, and so would love to talk to you and others about that experience before transplant, if the timing works out. I imagine my perceptions pre- and post-transplant are very different, and then in surprising ways, they've not changed much at all. I cannot wait to start talking to others about what they've noticed through all of this.

Thanks, all! :beer1;

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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
monrein
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« Reply #22 on: August 08, 2011, 11:26:48 AM »

This is very exciting cariad and I look forward to eventually following, possibly participating in and reading your research.  The topic of embodiment is fascinating and I think we have a thread somewhere here that alludes to it.  Here's a link to an interesting article, mostly about heart transplantation but hey, an organ is an organ is an organ to some degree.

http://www.ucd.ie/philosophy/perspectives/resources/shildrick_contesting_normative_embodiment..pdf
Logged

Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
cariad
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What's past is prologue

« Reply #23 on: August 08, 2011, 11:31:13 AM »

Oh my goodness, thank you, monrein! I hope to read this today! How lovely of you!
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
jbeany
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« Reply #24 on: August 08, 2011, 01:26:30 PM »


http://www.ucd.ie/philosophy/perspectives/resources/shildrick_contesting_normative_embodiment..pdf

Woooo... I need to read that over when my head is clearer. 
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

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