The experience of living kidney donors: Disenfranchised grief before, during,

[okarol]

The experience of living kidney donors: Disenfranchised grief before, during, and after donation

by Young, Vicky L., Ph.D., Fielding Graduate University, 2007, 302 pages; AAT 3287706

Abstract (Summary)

The numbers of living organ donors are growing in the United States, with living kidney donations being the most prevalent avenue of medical remediation. Living kidney donation has potential risks and consequences but there have been no long-term studies on the impacts to donors' health and lives.

In this study, 12 living kidney donors were interviewed to share their experiences. The researcher witnessed their stories from the phenomenon of kidney donation and found common and key themes. The donors expressed personal impacts including stress, disenfranchised grief from lack of emotional and social support, and physical complications. However, these donors did not regret their decisions to donate no matter what the outcomes. With dissemination of studies of living kidney donors' experiences and voices, research can inform transplantation teams and health care practitioners how to prepare donors for their recovery and provide diligent physical and emotional care for living donors, before, during, and after donation.

http://proquest.umi.com/pqdweb?index=0&did=1425300621&SrchMode=1&sid=1&Fmt=14&VInst=PROD&VType=PQD&RQT=309&VName=PQD&TS=1203301300&clientId=73075
 for a 24-page preview. You can also purchase a full copy (over 300 pages) by calling ProQuest at 800-521-0600, but the 24-page preview may be sufficient.

If you have questions, or want to share your story with the researcher, Vicky Young, you can email her directly at vyoung@prescott.edu

[stauffenberg]

In fact there have been dozens of large-scale studies of the health of kidney donors post-donation, so the statement that this topic has not been studied is completely untrue.  But then again, I have never heard of anything called 'Fielding Graduate School,' and having a Ph.D. is not the proper qualification to be making blanket statements about medical realities, so I wouldn't expect much of this study in any case.

[xtrememoosetrax]

In fact there have been dozens of large-scale studies of the health of kidney donors post-donation, so the statement that this topic has not been studied is completely untrue.  But then again, I have never heard of anything called 'Fielding Graduate School,' and having a Ph.D. is not the proper qualification to be making blanket statements about medical realities, so I wouldn't expect much of this study in any case.

Oh stauffenberg, I cringe with embarrassment on your behalf; I would think this kind of "argument" would be beneath you.  On the other hand, your ability to utterly dismiss points of view that differ from your own, thereby reducing complex issues to ludicrous oversimplications, never ceases to amaze me, so I guess I really should not be surprised by the reductive quality of your statements; it's just that I always, in spite of myself, expect better of you (she said in a very stauffenbergerish tone  ).

[stauffenberg]

That any author can have written such an extensive study on an issue and still come out with the outrageously stupid and uninformed statement that the health of kidney donors has not been studied, when in fact the literature on this topic runs to HUNDREDS of published articles, is beyond belief and deserves the curt dismissal I gave it.

[stauffenberg]

My point is reinforced now that I have discovered that the pompously-named Fielding Graduate School is a CORRESPONDENCE school.  The idea of getting a doctorate by correspondence is too laughable for words.

[Treasure]

Could you please give your definition of a correspondence school? I know some people think of my online program as a correspondence one... because of it being "online"...but it is definitely far from being a correspondence program.

And boy, my friend must really be an idiot...because she's moving to Santa Barbara soon to do her Ph.D at Fielding. I'm thoroughly confused....

[stauffenberg]

The main concern I have about Fielding is that they offer a degree in CLINICAL psychology by mail!  How can you learn anything about diagnosing psychological conditions without spending hundreds of hours in the wards of a psychiatric institution studying their symptoms?

[xtrememoosetrax]

My point is reinforced now that I have discovered that the pompously-named Fielding Graduate School is a CORRESPONDENCE school. The idea of getting a doctorate by correspondence is too laughable for words.

Could you please give your definition of a correspondence school? I know some people think of my online program as a correspondence one... because of it being "online"...but it is definitely far from being a correspondence program.
And boy, my friend must really be an idiot...because she's moving to Santa Barbara soon to do her Ph.D at Fielding. I'm thoroughly confused....

Thank you, Treasure. I was having difficulty coming up with an appropriate response to this one.

Stauff, I'm glad to know that we share a distaste for pomposity.

[spacezombie]

I read the preview and I am not very impressed with the woman that wrote this paper. I have to agree with stauffenberg on this one, haha. In the paper, she complains about donating several times which makes me think that she should have never been a donor. Many people want to help, they want to be donors, but when it comes right down to it they just don't have the strength to do so. My mother donated to me in 1997 and she has said many times that she has never regretted it, that it was one of the best things she has ever done in her life, and that she has never noticed the difference. And she had the traditional surgery and a rib was removed. Donors need to understand that there are many things that can go wrong with any surgery. This is something that must be considered before donation.

[pelagia]

A key question to ask about any school or program of higher education is "Is it accredited?"  It appears that the Fielding Graduate University is accredited by the appropriate organizations.  My own university in the southeast of the US is accredited by the Southern Association of Colleges and Schools (SACS), which I believe is the regional equivalent of the WASC, which has accredited the Fielding Graduate Program.  FGU's clinical psychology program is accredited by APA, which is the appropriate professional society for that field. 

Here is where I found the information - http://www.fielding.edu/about/accreditation.htm:

"Regional accrediting bodies, recognized by the US Department of Education as the leading authorities on educational quality, develop criteria for evaluation and peer review processes that are used to appraise institutions. The institution must demonstrate that it meets, or exceeds, these standards in order to be recognized as an "accredited" school, college or university by the accrediting agency.

Fielding Graduate University is accredited by the Western Association of Schools and Colleges (WASC). Fielding's WASC accreditation is important because it indicates that the university has met-and maintained-the highest levels of educational quality.

In addition to Fielding's WASC accreditation, the Clinical Psychology program is accredited by the American Psychological Association (APA). APA accreditation promotes consistent quality and excellence in education and training in professional psychology."

Only a portion of Vicky Young's dissertation is available online.  Looking at the table of contents, I can see that she has included a section called "Limited References to Donor Experiences."  I presume that she is talking about the scholarly literature (as opposed to the popular press or websites such as Living Donors Online).  I would want to read the entire dissertation (or a published paper derived from the dissertation, which would be subjected to peer-review) before I came to any conclusions about her conclusions.  A dissertation is typically reviewed by a student's faculty committee, about 5 members who have expertise in the student's area(s) of study.  A paper submitted to a journal will be reviewed by professional colleagues who are not revealed to the author.  Those reviewers give their opinions on the quality of the work and the overall manuscript to the editor.  In other words, there are a series of filters that any work must pass through on its way to the professional community of any field.  A dissertation has been only part way through the filtering process.  And you can contrast this with online posts of individuals, which may go through no filtering process whatsoever.  It's important to "consider the source" when using any information, especially if it affects your health and well-being.

In any case, as the wife of someone who will receive a kidney donation two days from now (!!!!!) and sister-in-law of the donor, I welcome any insights about the experiences transplant recipients and donors have.  I would rather know that my brother-in-law might experience depression after the donation then allow him to go through that experience without any support or resources.  It's also scary to learn that about possible complications associated with surgeries.  Apparently even laprascopic kidney harvesting can have long-lasting impacts for some.  In the end though, we put our trust in the surgeons, nurses, social workers and others who will be involved in the process.

Linda

[xtrememoosetrax]

Great information, excellent points. Thanks, Linda.

[sisterdonor]

Linda,

I'm a donor and I did go thru depression after the surgery.  It hit me really hard between 5 and 14 days post surgery.  I think I still have a bit of depression but it has lessened. 

[spacezombie]

Interesting. I don't think my mom ever mentioned feeling depressed but I'm not sure she would have told me since she just wanted me to feel better. Did you feel like you received enough support during and after the transplant? Did you feel worse than you thought you would? Perhaps donors need a little bit more done for them in terms of aftercare and counseling. 

[monrein]

When I read the preview of this study, Spacezombie, that is what I took away from it.  I'm sure not everyone has the same feelings after but the study was a qualitative (as opposed to quantitative) one, of only 12 people and I found it interesting to  read about their individual experiences.  I cannot of course comment on the academic rigour of the study, but as many of us here know it is not pleasant to be told that our personal perspectives are invalid simply because "most" people don't feel the same way.  I would hate for any donor to have their perspectives invalidated and it is important to note that all donors quoted in this study said that they would do it again.  I worry about all my potential  donors and there is one that I particularly worry about because her husband is not really in favour of her donating.  She is adamant but I don't want to be in any way a factor in marital issues between them.  I've offered to pay (they live in the US) for them to consult with a neph so he can ask his questions and also for some joint counselling so they can try to sort it out together and be on the same page.  I've also told her repeatedly that her first loyalty has to be to her immediate family and that if their decision is no I'll be OK with that.

[sisterdonor]

Interesting. I don't think my mom ever mentioned feeling depressed but I'm not sure she would have told me since she just wanted me to feel better. Did you feel like you received enough support during and after the transplant? Did you feel worse than you thought you would? Perhaps donors need a little bit more done for them in terms of aftercare and counseling. 

I never mentioned it to my family.  Maybe I should have but I couldn't explain the depression so I didn't feel like it would do any good if others knew and I certainly would never tell the recipient because he was dealing with so much more than I was.  Not being able to recognize any concrete factors that made me depressed was difficult.  It still baffles me.  I had no real reason to be depressed at that point but yet I felt like crying all the time.   I had surgery before that was just as painful and similar recovery and never had any problem like this one.  Maybe there is something to the theory of cellular memory and sort of a grieving for a missing body part.  I just don't know and I doubt science will ever get to the root of it.  At the same time that I was going thru depression I also was elated that my brother was doing so well so it was a weird mixture of emotion.


Some weeks later I did have reason to be down and that was because my brother went into a rejection episode.  Thankfully he was treated and came thru it OK but the week that he was back in the hospital was a long one emotionally for me.  I can't even begin to imagine what he felt like during that week.  It was scary to think that after all we had been thru that it might fail. 

One other problem to note is that I became ADD for awhile.  I'd say perhaps two months.  I still feel like that a little but it has gotten much better.  In the beginning I couldn't even concentrate enough to read a newspaper article.  My thoughts and actions were fragmented and I couldn't complete a given task for the life of me.  Getting back to being productive at work took all the effort I could muster.  I'm doing much better with that also but again, I think there are still mild remnants that I somehow push on thru. 

None of these issues would have stopped me from donating had I known beforehand that I would experience them.  Like most donors, I have no regrets of donating and am a big advocate for living donation. 

If you ask me what can be done to prevent the depression or the ADD I don't know.  I don't really think more support than I had would have helped and I don't really think counseling would have either.  It's one of those things you just have to live through and have faith that with time things get better and they do.  One thing that I don't think should be allowed is for donors to be alone during the first two or three weeks after.  I was alone most days because my caregiver, my wonderful sister, had to go to work.  She came home for lunch a few times but mostly I was alone during the day.  Looking back I recognize that probably wasn't a good thing.  In fairness, it was I who insisted that she not take those two weeks off from work.

[spacezombie]

Thank you for describing in such detail how you felt after transplant, sisterdonor. It makes sense that most donors wouldn't tell anyone of their depression in order to not burden the transplant patient. I wonder if it is something like cellular memory; the mourning of a lost organ. Perhaps it is a combination of factors. Plus your body suddenly has less kidney function than it has always had and that may make you feel bad for a little bit. My boyfriend is donating soon and I hope I'm able to make it as easy as possible for him. <3

[kellyt]

Is your boyfriend donating to you or someone you know?  I think that's wonderful!  My husband had his blood drawn last Monday for testing.  I think it would be amazing to receive his kidney!

[spacezombie]

My boyfriend is donating to me on June 10th! I'm excited but also very scared. I will feel so much better when I wake up and the nurses tell me Joe is okay. I hope your husband is a match!

I'll be posting updates during the process on both flickr and tumblr:

http://www.flickr.com/photos/blakethedog/
http://chickenlegs.tumblr.com/

[kellyt]

I'll be sure to check those out!   I'll be thinking of you two.  Good Luck.  That's wonderful!!!!

[stauffenberg]

Sigmund Freud's view of depression was that it arose in the patient from hatred for someone else, but since the patient could not, for various reasons, express that hatred for the other person openly, or even admit to himself that he hated the other person, the patient turned that hatred against himself where it manifested as the sensation of depression.  Thus in the case of transplant donors, perhaps they inwardly resent the need in the person close to them which forced them to feel they had to make the sacrifice of donation, and this resentment then manifests, not as hatred against the needy organ recipient, but as depression.

[Sunny]

        Stauff, I think you may be onto something regarding why donors have depression after surgery. However, hatred is not the issue:
Sigmund Freud's view is that depression is anger internalized. When a person feels they cannot express their anger outwardly, they internalize their anger which manifests
itself as depression. It is not an issue of hatred, but rather the inability to express anger. In the case of donors, they may be unable to express anger or frustration
regarding how they are feeling because they must show a good front so as not to worry recipients and caregivers. It's not that they "hate" their recipient, but they are
forced to keep a lot of anxiety and emotions inside because they don't want to create any more issue for everybody. The recipient gets all the attention, and the donor
has to "suck it up" and gets overlooked in their needs of support. After all, a donor has just gone through major surgery too and the effects of any major surgery
on the human body are extensive.
          The information provided in this study simply reaffirms my belief that a living donor needs every bit of attention that a recipient gets before, during, and after
surgery. In my personal experience with relatives wanting to donate, I always felt the transplant team did not emphasize enough the issue my donor would be going through.
It seemed that everyone, my family included, were so focused on getting me a transplant they overlooked many emotional and physical issues regarding my potential
donor.  I wanted to scream out, "What about my sister. How will she be taken care of after she is released from the hospital? Who will make sure she
is O.K. 2 weeks, 2 months, 2 years, 12 years post surgery?" I found that beyond 2 post-surgery appointments for my sister, nothing else was ever going to be done for her.
They simply didn't care about her welfare beyond that point. All they seemed to want was a relatively healthy person to get a kidney from so they could practice another
surgery and make their hospital statistics look good. They only cared that if my sister was willing to donate, and with a six point match, they were bound to look good.
(In the end, I didn't go through with the surgery).

[xtrememoosetrax]

I found that beyond 2 post-surgery appointments for my sister, nothing else was ever going to be done for her. 

Everything I have read and heard about living donation in the United States indicates that this is pretty much the norm across the board. Things are beginning to change, but progress is slow.

[monrein]

That makes me very very sad.  Makes no sense either if living donation is something we want to encourage.

[sisterdonor]

I suppose the depression I felt afterwards could have had something to do with anger in a way but Stauff, you were way off the mark.  Way off.  There was NO anger having anything to do with family or recipent or being in a position of needing to do the donation.  None, no way, no how.

If indeed anger played a part in the depression that I experienced afterwards, and I'm not convinced that was it, it would have been anger against the transplant team who very LITERALLY had them roll my gurney out to the recovery room as though I was a cadaver.



They 'forgot' to give me the shot of morphine or dalaudid that they give surgical patients right before they bring you out of anesthesia.  I had NOTHING.

HORRIFIC pain, spiking blood pressure and truly, a threat to my life ensued.  It took them 1 hour and 20 min to get a doctor to write the order to get the syringe to give me the shot.
One donor died because of this happening to him.  I found a paper written about his ultimate dissected aorta attributed to the spiking bp from exactly the same situation. 

They do so many cadaver operations it is no wonder that this has happened a few times but it happened to ME and I was indeed angry.  I still am very, very angry.  What I went thru in that hour and twenty minutes was so nightmarish and now I do relive it over  and over and get angry over and over.  So little regard for my wellbeing after they got the kidney out astounds me.  No checklist was used to ensure my safety.  No one cared.  I felt like a throwaway cadaver they thought would just go to the morgue and they left me to fight my way thru such white hot pain.  My will to live was tested because I swear there were moments when I was trying to hang in there with that pain that I would have taken death easily and welcomed it - it was that bad, I'm not kidding you.

[okarol]

It kills me to hear of your horrible treatment sisterdonor. Until better care and follow up is given to living donors, the number of people who might consider it will be few and far between.