Friday, April 17, 2009
Back to the point of this...
I'd like to get back to the reason I started this blog...to talk about the unique challenges faced by the family of a living donor. As I told you in a previous entry, I was really angry at my husband for deciding to do this. I had so many emotions that I had never had to face before. I didn't know what his decision said about his feelings for me. If he knew he could be risking his life, our business, our happiness, yet was still choosing to go ahead with the donation, did that mean he cared more about his friend than his family? I'm sure this was not the case, but it was a thought I had to learn to sort through. Didn't he care that I was getting berated at work for taking time off for his appointments? You see, I initially told him I would not participate in this whole thing, but then if I didn't, it wouldn't happen, and I become the Fred-killer. Over time, I quit fighting it and did what I could do to help. Not that I was all on board for it, I was just too weary to fight it anymore. Our lives were very stressful long before the transplant discussion came up (that's for another blog) and I truly felt like the strain of this would ultimately land me in a psychiatric unit. I suppose I should mention that all of this was further complicated by the fact that we live in Ohio, our friend lives in Florida. I dealt with people who didn't understand why I was "letting" my husband do this, complete with all the things they would say to their husbands. I put up with my boss referring to it is my "vacation". I can't remember when I've enjoyed a vacation so much - hours of sitting by my husband's bedside watching him writhe in pain, eating scrumptious hospital meals, watching t.v. on a 12 inch screen, yes sir, vacations don't get much better than that. I wanted to smack him. I put up with having my annual raise reduced because I "chose" to go to Florida and be with my husband during the surgery. Given that my annual raise each year is calculated based on a percentage of my previous years salary, I will be docked each year I work there because I wanted to be with my husband while he had major surgery. The only good news is that I don't plan to work there much longer. I don't expect any special perks because my husband donated his kidney to save a life, but neither do I expect to be smacked for it.
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5 comments:
My initial, and continuing, take on the blog by firemom31, Lonnie's wife, is somewhat different than most reactions here. I think that her story so far is quite powerful and valuable, because it discusses an issue that may be ignored or unrecognized in some living donations: discussing the balancing of the potential donor's altruism and death.
First, though, I also agree with some critics; I was put off with one sentence in her first entry. "NO WHERE will you will you find anyone who will tell you the whole story, the whole truth." Without the caps, the sentence is correct -- but that is because no one person can tell "the whole story." Even LDO taken altogether does not tell "the whole story." On LDO, each of our stories we have told is only part of our "individual whole story." LDO does not include the stories of those who do not write or have not written in LDO, in the USA and even more elsewhere. Donation is not ONE "whole story" and ONE "whole truth"; donation is many stories and many truths. Thus, I thought Firemom31's quoted sentence was a bit presumptuous.
But I also thought her blog is one *important* story. Firemom31's situation put in stark relief a problem that not often mentioned. She had experienced multiple severe traumas -- the death of her 20 year old first husband, the murder of a 3 year old granddaughter, the suicide of a friend. If I had experienced those traumas, I would not have as much resiliency and emotional reserve as I do. She and Lonnie did not have a lot financial and time reserve, either. In that setting, apparently without there being any prior discussion, one day Lonnie announced that he was going to donate a kidney (= put his life at risk, and consume and put at risk resources and time that they had little to spare). Not exactly a "we" discussion. His statement, given her experiences, triggered her "going postal." Her fear of yet another death -- by a *voluntary* action! -- in her close world. Yeah, I understand that.
Her story held a mirror up to what I did. I thought I had started a real "we" discussion with Carolyn, my wife, about being interested in being a nondirected donor, and asked her what she thought. I tried to emphasize that I was just thinking about it, had not yet researched how safe it would be, and did not even know if I was medically eligible because I had not started to be worked up.
But even at the time, I was feeling I had put her in a tough position. How easy could it have been for her to say, "I do not want you to" (i.e., for her to oppose this new possible step of my altruistic behavior)? Although we found ways to discuss it better over time, the discussion was difficult.
Discussion with one's parents may have a related difficulty as well. I was surprised by how fearfully my 80+ year old mother reacted, a former surgical nurse. After all, I was old enough make my own decisions, right? Not entirely. Parents do not want their children, even 67 year old children like me, to die before they do. And it was not until that telephone call with her last year, that I began to think what self-torture and worry I had put my Mom and Dad through 40+ years ago when I volunteered for the US Army, then volunteered for the Army's Special Forces (Green Berets), then volunteered for and went to Vietnam -- twice. But, of course, they never said anything to me. A few months ago, I mentioned to my younger sister (who was living at home during that time) my new realization about my parents unstated reactions then; she said, "Well, DUH!"
A lesson for many of us in firemom31's story is that initial the discussion with spouse/partner may be much more difficult than we donors and potential donors may realize or want to admit. The difficulty is talking about death -- that we potential donors are deliberately doing an action that both is commendable but also carries the risk of death and other significant costs broadly defined.
Like Clark, I hope firemom31 joins the conversation on LDO. But I also sent this same posting to her blog, and will continue to check it periodically for new installments in her story.
Hi! I was really happy to find your blog. I'm planning to donate a kidney to my mom this summer, and my husband (we just got married on April 4th) is having some reservations on my behalf. I think it would be be great for him to read that he is not the only spouse that has felt this way. I just had a question for you regarding the type of incision that your husband was given to remove his kidney. I am getting the laparoscopic incision in which the kidney is removed through a small incision in the pelvis. Was your husband not offered this less invasive procedure? I know sometimes they go in, and for different reasons they can't do it laparoscopically so they have to revert to a traditional thoracic incision, which it looks like is the type your husband had.
Thanks!
Amy
Bill, thank you so much for your thoughtful and important comments. Your post is a valuable addition to this blog. I want to be certain that you understand why I have chosen not to join and respond on LDO at this time. Both before the transplant and during the entire experience, I never felt that a site for donors was the right place for me to express my fear and anger, I think that donors are going through enough with their own personal fears and internal conflicts; I never want to be responsible for creating additional emotional angst for someone embarking on such a journey. I know my husband felt bad about what he was putting us through, he didn't need me to go out of my way to make him feel worse. I'm sure the great folks at LDO have been, or are, dealing with enough internal turmoil without getting my two cents worth in the mix. I will stay right here in my cozy corner and respond to anyone who wants to venture over. Once I have purged my soul completely, then I will be happy to stop by "your place" and offer support to other family members who are where I was. I hope you understand, and I hope the others will as well. You are all in my thoughts and prayers.
Dear Adrianna's mom,
Thank you so much for stopping by. I wish you well in your journey. Please tell your husband he is welcome to contact me at any time if he needs a place to vent or has questions. There are some things we just can't say to the donors we love so much, but they still need to be said. Regarding your question about my husband's incision, you are correct. He did have the traditional thoracic incision because he has had previous abdominal surgeries that made the laparoscopic procedure risky for him. Please continue to stop in and keep me posted.
firemom31,
Thanks for your kind words. I respected your decision before your explanation, and respect it even more so after reading it.
When you are ready, please join our discussion -- for 2 reasons. 1] Other people experience similar fears and anger, not just you. I suspect that Living Donors Online (LDO) tends to not include those as much as they exist/existed in the close relationships of us living donors and potential living donors. We should be more aware of the possibility that some in our close family have them. 2] The purpose of LDO is not only to give support. The purpose includes to tell it like it is. And, in general, LDO does do so. I have read about much more problems on LDO than I read in the consent documents for my surgery plus I was told by the transplant programs plus what I read in the medical literature. (As you may know, I am a physician; I read a LOT of articles and texstbooks before deciding to donate.) LDO is not a "smile, be happy, donate!" propaganda group -- although, yes, most of us ultimately are in favor of donation in the right circumstances. So, when you join the discussion, you do *not* need to "offer support." Your expressing what is too often unexpressed and unrecognized, even on LDO, is important for all of us.
Take good care!
Bill
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