I saw this beautiful post on Facebook that both celebrated a two year anniversary and talked about body image with a post transplant body. Shared with permission.
Kassandra's post got me to thinking about my own body and self images. It also got me thinking about how the procedures I've undergone, and the medications I take, have changed my body.
Each of my scars is a story. They are a permanent journal of my VATS Biopsy, my lung transplant, and my Nissen Fundoplication. They pair nicely with my earlier scars, keloids from burns when I was 4 years old, scars from a motorcycle wreck or two, and playing sandlot football. Like Skillet sings in their song "You Ain't Ready", "What doesn't kill me makes me who I am". These scars and my tattoos are a good visual record of who I am.
This is me still swollen from my lung transplant. I had to lose a lot of weight to be transplanted and at the time of my surgery I was still heavy, and being swollen kinda makes me look like a grape. After my procedure I continued to lose weight until I got to a healthy goal.
Here I am healed and at (or at least near) my goal weight:
As you can see, lining up my nipples wasn't a very high priority when they put me back together 😎 what you can't see is that the nerves to my nipples are damaged and they are always sore. Loose fitting shirts with stiff/rough fabric really bothers them and some things that used to be very enjoyable can now be quite painful. Another thing you can't see is how they lined up my ribs after the procedure. My left side is perfect. I can tell where I was split, but even by feeling most people probably couldn't. My right side is a little out of line. If someone looks for it now they could probably pick it out, if they felt for it they would definitely be able to tell. I can also feel my Clamshell Sternometry Wires. None of this is a big deal and sure beats what would have happened without the transplant.
My intent with this post was to follow Kassandra's example and share some of the post transplant realities that do have an effect on my self/body image.
I spend one heck of a lot of energy trying to appear 'normal' when out and about. Losing 60% of my post-transplant highest lung function due to my chronic rejection is hard to hide. I walk slower than most, and if I try to walk faster I end up out of breath and having to take a break. I'm also about 15 pounds heavier than where I look and feel at my best. My team wants this weight so when things go sideways for a bit I have the energy reserves available to comfortably get to the other side.
I guess that the main thing that bothers me is my voice. Between the transplant, all the bronchoscopies, and the various other ...scopies with cameras and probes down my throat, my voice isn't what it should be. Phone conversations and even some in-person conversations can be difficult. My voice is the one thing that I am really self conscious about.
I've lost a lot of bone density due to the meds and I'm over 1" shorter than I was pre-transplant. The prednisone has made my skin pretty thin, and avoiding the sun makes me pale. I'm on Warfarin since the Pulmonary Embolism, so when someone misses an IV poke, the blood splotch can last for over a month. My spleen is enlarged, it's grown enough that you can tell just looking at me if you know what to look for. We're not sure what is causing that, but not much to do about it at the moment. So if someone's paying attention, they can tell that I'm not 'normal' healthy.
Like Kassandra mentioned, acne is a thing with the meds. I get it on my face and chest. Sometimes it's painful acne
In reality, any body or self image issues I may have after my transplant are insignificant compared to life before transplant. I almost feel guilty talking about them, almost like I'm disrespecting this wonderful gift given to me by my donor family. I am alive, and I am in much better shape than I was for at least a year prior to my transplant. I'm able to take care of my Sweetie and share in our children's and grandchildren's lives. Life really is good, and even though I'm not 'normal' healthy, I am enjoying being post-transplant, on long term steroid and immunosuppressants, and being treated for chronic rejection healthy 😎