2-19-13/Hanging In

Things have been pretty quiet – a good thing.   I have been feeling okay, with a few bad days here and there. The good days are pretty good, and the bad are mostly just days were I can’t get going and feel super exhausted. I have not had the stomach, head, and other ancillary … Continue reading

12-31-12/A New Year with a New Kidney

Reflecting on 2012, it had to be one of the longest years of my life.   In April was the kidney transplant, June the ureter revision, followed by continued turmoil as my body, my family, and I, adjusted to having a new organ, new meds, and a new lease on life.   It was tough … Continue reading

12-13-12/Back in Hospital

I went to Yale today for a semi-routine visit – although there was some concern I “might” be in rejection.   My creatinine came back at 3.4! Needless to say they did an immediate biopsy (with results – at least preliminary results – coming tomorrow) and admitted me.   So I am in the hospital … Continue reading

12-12-12 – May be in Rejection Again/Still Feel Crappy

Well, I haven’t written in a while. November was tough. Steroid treatments for the rejection were difficult, as usual. I had trouble sleeping and was wired at times, exhausted others, and gained more weight. Thanksgiving is tough because it is the anniversary of my father’s death. It’s been 7 years now. I can’t believe it. … Continue reading

11-6-12/BK Virus Getting Better, but In Rejection Again

First, the good news. The BK Virus has dropped about 30% in my blood and is not in my kidney.   Also good news: We survived Sandy. No power or heat or running water for 5+ days, but we did better than many. A generator is en-route as I never want to do this again … Continue reading

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

8-21-12/Home, But Still, Uncertainty Remains

I am home!   My white blood count was stable around 1K, but my creatinine was back down to 1.9. My blood sugar is still high – but mostly very high 6-10 hours after Prednisone – still a high dose. That seems to indicate that is the likely culprit.   They decided better to quarantine … 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

7-12-12/3 months & Staples Out

Today marks the 3 month anniversary of the transplant surgery. What a bumpy road!   It feels like much longer as the struggles have been great.   On the upside – all 49 staples came out of my abdomen today. It was a dramatic turnaround – the antibiotics helped me avoid an infection and actually … 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