8-09-12/Good News on Rejection & BK Virus Treatment Options

I needed a good visit at Yale today. Things have seemed bleak and I have been very down. So much so I haven’t even bothered posting. I also have been having side effects from the steroids (high blood pressure, trouble sleeping, agitation, etc.). In fact, I haven’t slept in over 30 hours at this point … Continue reading

7-16-12/BK Virus

Today was supposed to be a day I didn’t hear from Yale. I had clinic scheduled for Thursday and my cystoscopy got moved to Wednesday. So other than the delight of waiting for that procedure on Wednesday things were supposed to be low-key.   Not so much. Clinic called today and left a message as … Continue reading

7-9-12/Stable?

I was at Yale this morning and things appear to be stable at the moment. Creatinine was 2.1 – statistically the same as last time – and the same it’s been for over a week. Not a great creatinine reading, but it’s stable.   They did an ultrasound and that showed no fluid in the … Continue reading

6-29-12/Crappy Day

Well, Friday was pretty crappy. They took out the catheter and the drainage tube. Although both are a relief, neither are pleasant experiencs. Frankly, the drainage tube is much worse. I almsot kicked the doctor who took it out. It’s not really painful as much as REALLY uncomfortable. It feels like your body is being … Continue reading

6-23-12/I Can’t Do This Again

I am really struggling. I don’t know if I can muster the strength to go through this AGAIN!   I know I don’t have a choice – and everyone keeps reminding me that – as if it helps. However, in many ways, I feel worse than going into the last surgery. Physically better overall, but … Continue reading

6-21-12/Overwhelmed – Don’t underestimate the mental drain

Today was supposed to be the surgery. I am glad it got moved so both top surgeons could be on the case, but part of me just wants this over with.   I am so overwhelmed from this hanging over me and knowing that my life – in a best case scenario – cannot return … Continue reading