Close call

The Drs. from FL finally called to let us know that there was nothing wrong. They said that as long as he didn't have any protein in his urine there was nothing to worry about. I was relieved, yet wary at the same time. I don't trust doctors anymore, and I wish I could trust that these doctors are right. I always feel like I'm waiting for something to go wrong with my husband. I wonder if I will ever be able to relax again.

Is the nightmare coming true?

Hubby went to have his first annual follow up lab work done this week. No worries, right? He feels okay, looks okay, is okay. Wrong! His creatinine level is elevated. He called and spoke with the transplant folks in Florida, and they are concerned. They will be meeting this Monday to discuss it and decide what needs to be done. Until then, we sit on pins and needles, hoping and praying that nothing has gone wrong. You would think, a year after the donation, this would all be behind us. Even for me, the professional Queen on Impending Doom, this was a surprise. I honestly thought that once we were through all of the recovery process and the complications, well, I thought that was the end. Nothing more to remind us other than a scar. I was so very wrong. As soon as we hear from the folks at the Shands, I'll post an update.

I knew this would happen

Before I truly start this post, let me first say that I don't believe that what I am about to type is rational in any way, it is simply a summary of my feelings, a means of venting my frustration.

We are still battling bills from the transplant. I have repeatedly sent billing information, made phone calls, etc., to no avail. Yesterday I got the first notice from a collection agency. We can't get ahold of Fred because he is in Egypt. So, while our receipient is traveling the world and enjoying himself, we are strapped with thousands of dollars in medical bills and can't even afford to go out for dinner. I told my husband this would happen, he didn't care, he wanted to do what he wanted to do. So far, short of death, almost everything I said would happen has happened. In the scheme of things, we saved a life, but damn, this is so frustrating.

I thought this was simple and to the point. Especially the part about talking it over with your family...

The one year mark...ta da

Well, the one year anniversary came and went yesterday, and with no fanfare. We couldn't celebrate ourselves, we have no extra money to go out for dinner or any of the usual things people do to celebrate important milestones. Fred is in Egypt, and he didn't call. I think that was the biggest downer so far. He was supposed to call since we couldn't be together, but not a word. I keep trying to tell myself (and Lonnie) that he may have had trouble calling out from so far away, or some other unforeseen thing may have kept him from calling. Lonnie was very down about it. Not that we think he should call and thank us for saving his life, far from it. We are disappointed because he is our friend, and we had looked forward to talking with him. We miss him, plain and simple. One year later, and still the emotional roller coaster continues...

The anniversary is approaching

August 19th is the one year anniversary of the transplant. Fred is off traveling the world, and here we sit in our dreary little home town, living our dreary little lives. A year ago today we were on our way to the airport, heading off to Florida for the big day. I find myself sitting here wishing that I was once again on that plane heading south. The only difference is that I would want it to be a one way ticket. I think that the excitement of the whole event, followed by a return to banality, sends a constant siren song...it calls me to come to where I feel alive, it calls me to come to where I have friends, but most of all, it calls me to a place where boring isn't an option. I wonder if this is real, or just some part of my psyche that wants relief from "ordinary-ness" at any cost?

Why do I feel guilty?

We are being inundated with medical bills from the transplant. I keep shoving them in a corner to deal with later (maybe) because I can't afford to pay them. Months ago I sent out letters to all of them, letters explaining how to go about getting paid. It seems not one actually read them, because the threat letters are arriving daily. Hubby says I should put them all in a mailer and send them to Fred. I suppose I should, after all, he is alive because of us, a few bills isn't too much to ask, right? Then why do I feel guilty every time I think about asking him to take care of them? It almost seems as if it takes away from the selflessness of the donation, but part of me thinks this is an irrational thought. I am so overwhelmed by it all still, almost a year later.

I miss him

It has been almost a year since the transplant. None of it was easy. My husband suffered for months afterward. We are stuck with piles of medical bills we can't pay. The hospital doesn't return our messages, so we don't why we're stuck with the bills, and can't find out what tests he may need in the future. We have basically been hung out to dry. You would think I would resent "Fred" for all of this. He is off cavorting in Florida and having a grand time, getting ready for 6 weeks in Egypt, while we struggle to afford gas money and watch our credit rating plummet as each new medical bill gets turned in for collection. The truth of the matter is that I miss him terribly. I would give just about anything to see him and his wife again. It is almost as if there is just a void there now, and they are all that can fill it. I don't know if other donors and their families feel this was about their recipients, but I find it rather strange that I feel this way. Any donors out there experience similar feelings?

What are your thoughts on this?

Lifebanc, a Cleveland, OH based organization promoting organ donation awareness, is hosting a walk/run fundraiser. While in it's basic premise, this is a noble plan, I am deeply disturbed by one aspect of the event - the registration fee. Here's is what they have posted on their site:

Adult Registration is $20; Children 12 and under is $10; Children under 3 are FREE! An event t-shirt is available for $5. Register by August 1 to guarantee a t-shirt. T-shirts are not guaranteed to be available for purchase the day of the event.

Now, for the general public who wish to support the cause, I think this is a very reasonable fee. What I find disturbing is that my husband emailed them to ask if there was a fee for donors and recipients who wish to participate, and guess what? $20 for adults, $10 for children. Now, I apologize if you don't agree with my opinion on this, but I just think that is plain wrong! Why should someone who endured the pain of surgery, risk to his own life, and a tortuous recovery, have to pay? Have the living donors not paid enough already? Many donors have suffered extensively and risked death in order to save the life of another, can they not forgo the $20 for these people?

I will choose to spend my time and energy, and even my money, on an organization that can appreciate the sacrifices made by living donors and their families, not one who tries to milk even more from them.

A Different Take On Living Organ Donations

Usually, when organ donation occurs, the donation is through cadaveric donation, or a deceased donor who has chosen to give the gift of life upon his death. While there is no question that this is the noblest of gifts, it is always proceeded by a tragedy and encompasses grief on one side of the equation. I spoke with a gentleman the other day who talked about his son who was killed in a car accident and had donated his organs. The man cried the whole time, reliving the death of his son in the telling of his story. As much as I was against my husband risking his life, I have to make the observation that by being a living organ donor, we were able to enjoy the thrill of saving a life without having to grieve over a life lost at the same time. Interesting paradox if you really think about it.

Feeling a bit lost

"Fred" is off enjoying his life. He's traveling the world, having people fly in to visit him, doing all the things he couldn't do when he was so sick. He hasn't answered any emails from us in several weeks. On one hand, we are thrilled that he is doing so much and enjoying his life again. On the other hand, I feel somehow lost without contact from him. There is just an empty sensation, like I've lost a good friend, yet the events that are taking place are exactly as they should be. Quite a paradox, eh?

Happy Mother's Day to all you moms out there!

It's the strangest thing

During the entire nine months my husband was undergoing testing to donate, I hated "Fred" and everything he stood for. I held him personally responsible for every day I had to take off work for my husband's medical appointments, fear every moment of fear I felt, for making me feel like my future didn't matter, for the very act of being my husband's friend. I never wanted to see him again, period. I only went with my husband to Florida because I feared it would be the last time I would ever see him. I didn't want to be in the same state as the man who was willing to take him from me. Fast forward to the second the surgeon came out and told us they were fine and came through with flying colors...I was instantly bonded with Fred and his family in an inexplicable way. I now think of them every day and can't wait to see him again, as well as his family. Their joys are now mine, our souls are forever intertwined. Incredible...

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.