I realize the last update did not include much about Mark's health. Since about the end of July we have been noticing some out-of-the-ordinary symptoms. Nothing too big but they started to create quite a long list. About the third week of August, Mark started having lung pain and fevers as well as some significant weight loss.
Those symptoms, added to the long list, were enough to make our Oncologist order a CT scan - which resulted in a pneumonia (fluid in lungs) diagnosis. Antibiotic medication followed with little change to Marks pain and coughing. Next, Mark got to enjoy a lung scope - they took samples of fluid and tissue. The evening after the lung scope, fevers sent us to the ER and we were admitted to the hospital for 2 days. ALL the different doctors got a chance to look at Mark closely - even involving the Seattle Super Doctors - we now have some answers.
Mark has Graft vs Host Disease (GVHD) of the lungs. Treatment is high dose steroids. We are glad to have his symptoms figured out and feel more in control with a protocol to follow - but we do not enjoy the side effects of the steroids. Prednisone (in these doses) make you feel hyperactive and like everything is amplified. It is hard to focus and rest. If things are loud they seem REALLY loud to Mark. If something is a little annoying it is SUPER annoying to Mark. We have been here before, we know how to handle this. Lots of teamwork and understanding. We use patience and humor and do just fine. Mark is actually talking at "Karen speed" these days! (hard to believe, I know!)
We are headed to Seattle on the 23rd of this month for Mark's 1 year post-transplant review. We will have lots of tests done and ask questions of the Super Doctors to find out more about Lung GVHD in the long term. Those doctors have seen this many times before and will have lots of info for us.
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Now for the fun stuff:
We are excited to host a party for Mark's 1 year post-transplant anniversary! See the invite below and PLEASE come! The more the merrier! We want to say "thank you" to all the donors and supporters we've been blessed to have this past year. Please spread the word. All are invited - let's make this a great day of celebration and thanksgiving for everyone who has followed us on this journey and been apart of our story this past year!
