Today I did my good deed and spoke to a group of potential kidney transplant recipients about my experiences with transplantation. I do it every other month and I always enjoy it but I also feel a little weird because I’m just not the average transplant recipient and I don’t want to lead them on with a false sense of ease.
I had my surgery 4 1/2 years ago, a month after graduating college. I never experienced dialysis. I had a living donor, so I was able to schedule my surgery around the other major milestones in my life (it also helped my kidney function wasn’t declining uber-fast, so I had some flexibility in timing). Also, being as young and generally healthy as I was, I had a relatively snafu-free surgery, recovery, and am completely back to perfect health — minus the whole extra kidney thing. Yeah, it takes some work to maintain, but for the most part I don’t even feel like I ever had a transplant. My life isn’t hindered in any way.
Most of the patients I see have a different story. Most are older and seem to have other health issues that make their stories a bit more complicated than mine. Or, at the very least, they’ve been on dialysis so their story is different. I didn’t have to deal with nearly the amount of pain, frustration, or declining health and side effects of dialysis that they did.
I often worry they can’t relate to me. I see my case as problem-free. Snap and it was over. I know it’s not that simple, but as time passes, I’m starting to forget all the minutae and remember it with easier thoughts. I make sure to reiterate that every case is different. And I hope that even if they can’t directly relate to me, hearing my story makes them slightly less fearful of getting a transplant.
To be honest, it took me a long time to get to a point where I could do this. Directly after my surgery, a lot came down on me. I’d been in a deep state of denial all the way up until the moment I woke up from the anesthesia. When I woke up, reality set in and I finally got how serious it all was. That I wasn’t just going to go in one day, get a new kidney, and come out a couple weeks later ready to continue going about the business of being a new college grad — moving out of the ‘rents house and getting my first job.
I went through a bit of depression, which wasn’t helped by all that time pent up in the house recovering, and it took me awhile to get motivated to get a job. After being so focused on my degree, and then taking that big of a pause, I began to feel like I’d lost all my newly acquired skills. I began to forget what my hopes and plans were.
Reality also set in each time I would go to the doctor. While waiting, us transplant recipients tend to talk. And everybody loves a good story. In the waiting room, yarns are spun about hernias, rejection episodes, multiple surgeries, and all kinds of ugly health problems that scare a young woman like me who’s just struggling with accepting this life and is now afraid every ugly health problem is going to befall her. My social worker continually invited me to participate in activities with other recipients, and to speak to potential recipients like I do now. I kept declining her invitiations and throwing away the support group flyers I got in the mail. I didn’t want to have those conversations about health issues because then it all got too worrisome for me.
As time passed, I got more comfortable with my health, and the realities that faced me right after the surgery were replaced by the new reality of a life back to normal. So I opened up more, and finally took my social worker up on her offer to speak to potential recipients. I still don’t do all the support group functions, but I do help out with their annual spaghetti dinner. I guess I’ve found a way to be involved, but not too involved since I still don’t like to hear about all the other potential pitfalls. Denial really is a beautiful thing.
When I left today, I felt particularly good about the experience. People had lots of questions, and I think they were all pro-transplant and were able to glean some information from my story. That doesn’t always happen. And oddly enough, I felt a renewed sense of love for DD. I know it sounds random, but after all that thinking I’ve been doing the past couple days, it all finally let up and I felt for once. I remembered how supportive DD is of my transplant and my health. As our relationship moves forward, it’s going to directly effect him and I’m more than confident he can handle it. And I love him for that. Obviously my last post proves why I have a blog category entitled “crazy crazy” because that’s what I am from time to time. Luckily, it passes.