I have had the opportunity to make contact with my donor, Katrin. We have had many questions of one another. It is a really neat process getting to know more about her and her family. I have been able to confirm that, no, she is not allergic to eggs. Something I appear to have developed at least to an extent.
There is still healing and change occurring every day. My tastebuds have, for the most part reawakened; some things taste just a little bit off. Anything artificially sweet. I still love spicy foods but cannot tolerate as much intensity as I once could. I have developed an affinity for Italian food and red sauces I didn't really care for before. My hair is growing out nicely but still thins at the temples and on top periodically. It thins around the time that my face breaks out in what looks like acne but feels like a heat rash on my face, neck and back. My eyes are intermittently (or is it alternatingly?) either so dry my eyelids stick to them like suction cups, or so wet it looks like I am crying - there isn't a whole lot of in-between. So, after being off all meds for about 2 years, I am back on a low dose of steroids to control the skin and scalp issues believed to be caused by GVH. Even at that low dose, however, I have gained 20 pounds (not good), and I have an even quicker temper. It isn't nearly as bad as the higher doses from the past, but STILL! It does seem to be helping some with the eye issue. Steroid drops to the eyes work really, well but aren't a long term solution, though, as they can stain the cornea. =0(
Back to that egg allergy, I have found that I cannot have caesar dressing and if I "want" to have eggs over easy (or with a runny yolk), I had better take a dose of Benedryl in advance. I have to keep Benedryl in hand just in case something gets through with runny or raw egg in it. Having your tongue and throat swell up, keeping you from breathing is pretty uncomfortable and scary! Flu shots are ok. Hard boiled, fried, scrambled, or omelets are ok. Prior to getting sick, eggs and chicken were my primary source of protein. For a time, afterward, I couldn't stand the taste, smell or texture of chicken. I am happy to report that that particular issue has been resolved. I am still not a big red meat or pork eater.
My energy levels have been much better. I have to say, this has been the slowest to truly recover, overall.
The kids and I have taken up biking together. That is a lot of fun and brings back good memories of my parents and brothers and I riding our bikes 6 miles round trip to have a picnic lunch at the park. I see some bike rides to the park in my kids and my future! I have had an opportunity to spend some good quality time with the kids. At school events, with friends. We even figured out how to pitch our "easy to set up tent" in our backyard for sleepovers with friends (adults must overcomplicate it because it takes a couple of 12 year olds 5 min to set up and much longer for the adults). We still have to master taking it down and folding it so it fits into its own case, but we are getting lots of practice.
I am ever grateful for this second chance at life and for those family and friends who have stuck by me through it all. Grateful for my donor and her family for their generous gift of life. And to my doctors and nurses at MD Anderson and Mayo, for your compassion and expertise and guidance over the years. I truly do not know where I would be without your encouragement and support.
Love to all,
D
