10-16-12/Not Ready For Prime Time

Overall, I have good news. I am feeling pretty good and my creatinine is stable (last reading was 1.8 – last week). I haven’t heard anything new on BK Virus – not even sure if they tested last week, so I might have to wait until the next blood test.   However, and this is … Continue reading

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

7-30-12/Biopsy Tomorrow

Tomorrow morning is the kidney biopsy. As most of you know, my creatinine has been creeping upwards over the past few months. Not a good thing. It could just be the BK Virus causing it, but they want to be sure we know what we’re dealing with.   I am really down. It seems that … 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

7-8-12/Lyrics

So here I am at 3AM – uncomfortable and unable to sleep.   The downside to sleeping as much as possible to try to escape the pain/depression/anxiety, is that it can catch up to you. Fast forward to tonight. Can’t sleep. Restless, tossing, turning, and doing something I love, listening to music.   I haven’t … Continue reading

7-2-12/Enough Already

Okay, they said there would be bumps in the roads. I get that. I am, however, ¬†getting sick of potholes that prevent me from reaching my destination – some consistent level of health. Not even great health – just consistent health. My standards are lowering by the day.   I was back at Yale today … Continue reading

6-25-12/Surgery Tomorrow

I don’t really know what to say. I spent most of today staring out into space and trying to rationalize this – or at least, make peace with it.   No such luck.   I will try to keep everyone up to date, but don’t expect anything for a few days, at least.   Thank … 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

6-19-12/Surgery Moved

Yale wanted both top transplant surgeons to perform the ureter relocation surgery. That would be both the surgeon who operated on me originally, as well as the surgeon who operated on my mother.   They thought they could both be together this Thursday, but were unable to make it happen. Therefore, the surgery is now … Continue reading