6-4-13/Still Stable

I was at Yale yesterday and my creatinine was 2.3. It was 2.1 two weeks ago and everything else looks good. They do not want to see me for 8 weeks!   I am still tired much of the time, but feel good when I am not, and still do not feel sick when I … Continue reading

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

1-24-13/Stable

I was at Yale on 1-22-13 and my creatinine was 2.3. I am now on Lisinopril (for about 2-3 months now), for blood pressure control, but mostly because it is believed to extend the life of the new kidney. They are not sure why, but it seems to have a protective effect on kidneys. I … 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

9-18-12/No More IVIG For Me!

I had my second IVIG treatment this past Thursday. Yale gave me 1/2 the dose, benadryl, tylenol, and cortisone. I was supposed to get the second 1/2 of the dose the following day. Of course, Friday I woke up with a fever and chills – again! I thought, “here we go again!” Luckily the fever … 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

7-12-12/3 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

7-9-12/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