I had another biopsy this past Tuesday and everything looks good as far as functionality. However, I did have low level rejection (Lv 1). This is common in the first year but after having a couple biopsies with no rejection and being 4 months out, it does scare me. I have been having a difficult time lately trying to fight through serious mental and physical fatigue. It's tiring just to convince myself that I have energy to do something, and when I am successful I'm usually hit the following day with intense pain which includes joint pain, muscle aches, migraines, and zero energy to get out of bed; which is all the more defeating. I seem to have about two good days a week at best on average. It's frustrating and stressful and the medicines tear your body up, also both physically and mentally, especially the steroids. There's not much positive I can say at the moment other than my husband is amazing at helping me in every way imaginable, oh yea and I'm alive.
Having an organ removed from you and then replaced by a stranger's is a hard concept to grasp, my body thinks so too. I know I'm making progress as small as it may seem. But even so, after a certain point it becomes very challenging to keep fighting just to stay alive. I've been fighting with my health since I was a child, and I'm just tired and exhausted. This is in no way me giving up, I'm just being brutally honest with myself and the world. I don't ever photograph the bad days, so it can look as if I am doing amazing. Nothing about this is easy but I ain't no quitter and I'll continue to put one foot in front of the other even if that's only every other day. As for now I continue my meds and go back for another biopsy in a month.
The Covid-19 situation presents another roadblock into keeping a strong mental game. It would be lovely and relaxing and a needed change of pace to be able to go to a friend or family members house for a nice conversation and dinner or go to a brewery or coffee shop to play a board game, or go down to the beach to celebrate what would have been our wedding day. But neither of that is in the cards for us anytime soon, especially with the rates rising so drastically here in the south. I'm not even allowed to venture into a grocery store or even a dr's office (unless it's a critical matter), I wasn't even supposed to go to the farmers market, but I was careful and I needed it for my sanity.
As I mentioned previously, this weekend we would have been in Charleston, SC by the water getting married. Although, to be honest, I much preferred our court house wedding on Valentine's Day. Small crowds are more my style, better for my anxiety too. The following are some photos of our wedding day, me winning in Catan Rivals, me giving Sterling haircut #2, and me getting some steps in. I know I'm lucky and I know I'm doing pretty well for only 4 months out, and I certainly know I have an amazing support team between my husband, my family and my friends. I'll keep moving forward as long as possible no matter how bumpy the road.
4 Month Post Transplant:
- Steroids: They make me emotionally unstable, break out like I'm a greasy teenager, make me grow man hair, and still provide me with a bloated face.
- I've been able to get back into cooking and meal planning and laundry when I have the energy
- My motor control is still very shaky making certain tasks and hobbies difficult.
- I walked 2 miles the other day which is the longest walk to date since transplant
- My days still mainly consist of binge watching Netflix, playing games, and reading at night.
Thanks for the continued support and the random gifts and cards that keep my spirits high. Stay safe everyone and please wear a mask for people like me!
