Having an urge to pee is a new sensation after years of End Stage Renal Failure. It wasn’t pee that came out. It was blood. Lots of it. The toilet bowl turned red. My heart turned black.
What is happening? Of course Franklin’s defense mechanism went up and downplayed the seriousness. It was Friday night. Over the weekend every bowel movement was accompanied by blood through his penis. By Monday, even he could not ignore it. He called his wonderful nurse and she set things in motion. Scheduled Cystoscopy and an Ultrasound were coming up in the next two weeks. We also booked on our own the doctor we saw last year that has done Encapsulating Peritoneal Sclerosis (EPS) surgery. I thought it was important to invite him into the discussion if there was a surgery involved.
It was a stressful couple of weeks. I posted the symptoms to the FB dialysis groups. We could not be the first to have these complications. One woman was brave to share her experience that her husband went through He was bleeding for weeks, had many emergency room visits, had surgery, and sadly ultimately died. I would push for a CT scan as she recommended.
Franklin’s transplanted kidney was in chronic rejection and was now hemorrhaging, calcifying, and had debris. He needed to get it out. He has now been bleeding for over 3 weeks. We have to do the surgery to get it out, but I am terrified of the EPS complication. A lot of scar tissue across his abdomen. If this surgeon is not aware of EPS, once he gets in there will he try to just cut through and cut his bowel or other organs?! This would not be the first time an experienced surgeon ignorant of EPS been surprised of what they find when they get in there. Are we moving forward to certain death? The risk is higher than the norm. I am afraid.
The timing of this surgery is ours. The paper work is ready. We just have to call in to schedule. I think when can I take time off work. There is a huge elephant in our interactions together. Will he die on the surgery table? We don’t talk about it, but it is there with certain questions and conversation. “You can find the insurance papers are….”, he says. We have to plan for this surgery, but will it help us or make things worse? If we leave the dying kidney in there, it may start to have tumors and have worse complications. We have to move forward with removing this third kidney. There is not much of a choice.
I hold my breath and will exhale when the surgeon comes to see me after the surgery, tells me everything went well, and Franklin will be ok. Until then we wait, my stress goes up, and we take one day at a time.