Really great news!

Hubby and I had been planning a vacation trip to celebrate the first anniversary of the transplant with his recipient. As it turns out, we will have to see him later than planned because he is going to be out of the country visiting family for ten weeks. I can't tell you how thrilled I am that he is doing so well, that he can travel and see his family again, something that was not a possibility a year ago. Moments like that erase all the bad stuff that came before, all the negative emotions. It's just wonderful and miraculous!

One Thing That Really Bothered Me

Throughout this whole strange trip there were many ups and downs, good and bad things happening, just one big roller coaster ride. There was, however, one thing that stayed constant and really made me crazy - people's reaction when I told them about it. I work in the medical profession, and believe me when I tell you that we are the hardest folks to convince that an elective (for the donor) surgical procedure is a smart thing to do. Most of the people I told were also medical folks. Most of them looked at me like I was crazy. People wanted to know why I would "let" my husband do such a thing, wanted to know if he had psychiatric problems, wanted to know why I was going with him to appointments, etc. From beginning to end, I never knew what kind of response I would get when I told someone. I soon came up with a standard response to the negative reactions. I simply told them that I did not have to approve of what he was doing, but I respect his need to do it. That usually stopped them in their tracks. I have to say that it really annoyed me to no end though. I'm pretty sure if it was their family member my husband was about to save, they would have had a whole different view of the situation.

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.

Just so you know...

I have gotten mixed reviews about this site, mostly encouraging, but some not quite so encouraging. I welcome both types. The positive ones keep me motivated to stick with this. The negative ones help me to think about how what I'm writing comes across to others and what things I should include in future posts. I can honestly say that, in keeping with the kind of person who would read this blog, even the negative folks have been polite and kind in their critiques. That being said, I want to clarify a few things. First, I spent a lot of time lurking on the forums my hubby belongs to, for the sole purpose of trying to find family members who might be feeling what I was. I did not find very much at all. Hear me out...these forums are awesome, but they are primarily for the donors and recipients. When I surfed the web, I found lots of YouTube videos, commentaries, articles, etc., but they were again geared toward donors and recipients. Some of the videos were wonderful and touching, hence my reference to warm fuzzies. As family members of donors or recipients, we have our own brand of warm fuzzies as well as our own fears and frustrations. My goal here is not to talk about donors and recipients, there are plenty of sites for that, but to talk about families and their experiences throughout the process. I not only welcome, but encourage comments from families as well as donors and recipients. It doesn't matter if you disagree or agree, both views are important and need to be heard. Please post anything you want to post, I welcome you all.

The beginning

My husband had put me in a bad spot, between a rock and a hard place, so to speak. I wanted desperately to refuse to have anything to do with this whole donation thing. Not that it isn't a noble thing, an amazing thing, really, but not my husband! I really can't imagine living my life without him and I just couldn't tell him to go ahead and risk his life, therefore mine, for a friend. Then there was the other side of things. Fred. Fred that we both love so much. Fred the amazing human who spent his life helping others, even after he got sick. Fred who had given so much to the world and just wanted a chance to keep on doing it. How do I say no to saving his life? I have to say that I have been through some horrendous things in my life - the death of my first husband when I was only 20 years old, the murder of my 3 year old granddaughter, the suicide of a friend, but none of that prepared me to deal with the swirl of conflicting emotions that cascaded through my soul constantly and fiercely. How would deal with my husband's inevitable request for my help in this whole thing?

The Decision

When I came home from work one day, and my dear hubby casually said, "I've decided to go ahead and donate a kidney to Fred (not his real name)," I went postal on him. Note the way he said it, as if it had been discussed and was simply awaiting his decision. No one asked me what I thought! Well, I had plenty to say on the topic. We were in dire financial straits and could hardly afford the expenses involved. We own a small business and I work full time. The business would collapse if he were to have complications, and we could not survive without my income. Who would take care of our disabled granddaughter during all of this? Who would take care of our pets? Who would get hubby to all the pre-testing appointments, given that we only have one car and I use it to get to work? What on earth was he thinking?! Of course, he told me he wouldn't do it if I really didn't want him to. Now how fair is that? My choices were to risk our income and lives, or sentence Fred to death, my choice. Damn, I was mad!

Considering organ donation? Is a loved one considering it?

I have decided that it's time to tell the truth. If you search the web for information on organ donation from the donor's perspective you will see a lot of happy stories from recipients and dying people who need our help. You will hear stories from donors who talk about how it changed their lives for the better, what an amazing experience it was, yada yada yada. NO WHERE will you find anyone who will tell you the whole story, the whole truth. Although I certainly understand that these good-hearted folks are trying to get people to commit the selfless act of living organ donation, I believe that the whole story needs to be told, not just the warm fuzzies.

On August 19th, 2008, my husband allowed himself to be put under general anesthesia and have his body sliced almost in half. His kidney was removed and placed in the body of his friend, who was in the adjacent operating room. What I intend to tell you about is the journey we took to get there, both the bad and the good. Although my husband took a great risk and made a great sacrifice to save his friend's life, do not be deluded; as his wife I endured some horrific moments and tremendous strain personally and professionally. To this day I cannot tell you if I would willingly go through it again. But then again, I didn't exactly go through it willingly in the first place....but that's for the next installment. I encourage any of you who have been there-done that to add your stories. I also encourage anyone with question to feel free to ask. I will answer as much as I can or direct you to someone who can.