This week has been rooouuuggghhhh…. a week from hell for sure. As you might have noticed, Shannon has not been posting much of anything since he has not felt very well. It has been rough.
I hesitate to post each day because at this point it feels like a vicious cycle – like a mary-go-round we cannot get off of. The alarm goes off first thing and he takes his pill, does his vitals, and if I am lucky he might just eat something. He tries to rest for most of the day besides me forcing him to drink or eat something. Then again at 8 pm we take care of pills and vitals all over again. Shannon was told having a transplant one time was like being on probation- you will have to check-in the rest of your life. That saying was so accurate!!
After transplant surgery you are assigned a post-transplant “coordinator”. Ours is named Julie. This poor woman is going to be tired of hearing from us but we have spoken to her everyday this week. She must be a robot and only allowed to give us certain responses when we speak to her.
Each time Shannon eats or takes his pills he feels nauseous and in pain. Starting on Monday we have made it a point to talk to Julie each day – hoping for some answers. We did get the Neoral meds decreased 50 mg in hopes Shannon will feel better. She also tracked the blood work results and encouraged him to drink more. I am pretty sure those are standard things for someone in her position. I cannot wait until Monday when I can meet her in person and beg for more help for Shannon. He is in so much pain and is uncomfortable. Just telling us this is normal is no longer going to work for this wife and patient!
I am definitely not trying to be negative, but when we decided to start blogging we both said we would be brutally honest about this process. That we would share things so that future transplant patients and families might know how to go through this process together. Let’s just be honest- it is harder than I had every dreamt of for the both of us! Thank goodness we have such a wonderful support system around us!