Ups and Downs

The last 3 days have been quite eventful. I know I haven't updated in a long time. That is because things have been going quite well. We met with the nephrologist this week and she said Scott is doing great and she doesn't need to see him at all anymore!! Then Scott had a biopsy and clinic appointment with the transplant team. We discussed Scott going back to work as early as next week part-time! We also discussed Scott finally getting off the prednisone(a steroid) after 8 months. He started with at least 50mg/day and was down to 2.5mg/day. If the biopsy results were good they told us he could go down to ZERO!!!! It was a good appointment.

The next day we took a trip to Edmonton. We haven't been there since Scott was transfered back to Calgary over 6 months ago. At that time Scott was barely taking a few steps with a lot of help. He was bloated from his kidney failure. He was still suffering from sleep deprivation and hallucinations. His legs looked like a Halocaust surviver's. His hair had fallen out in places and he stilll had a lot of tubes. In other words he looked pretty bad.

We had the opportunity to see the surgeon, the Berlin Heart doctor, the transplant coordinator, a transplant cardiologist and some of the CvICU staff. They all said they wouldn't have recognized Scott on the street. Thank goodness!! He is a normal, walking, pink, non-bloated regular-hair guy now. It was a great experience to see their smiles and let them know that we appreciate their hard work in keeping Scott alive - because it was hard work!!! We also had a tour of the new units in the new Mazankowski Heart Institute. The new CvICU was SOOO much nicer than the old one. Individual rooms, windows, healing gardens... Oh well, I guess I'm glad we didn't wait an extra 6 months to be able to benefit from the new building.

After that good experience we were able to visit with some family, enjoy time together and attend the temple for the first time together in over a year! We were having a great trip. Then came the bad news. We received the phone call. Biopsy results. Rejection! Not the worst - a 2R. A 3R would be worse. But the dream of ending the prednisone is dashed! Now Scott must take 100mg of prednisone for the next few days then he gets to start the weaning process all over again. We were at 2.5mg!!!! Now the side affects again. Swollen face, pimples, mood swings, bone loss, high blood sugar, etc. etc... I think the weaning process is quicker this time - at least that's what I hope. Now I'm not sure about going back to work. I'm not sure what all of this means. When you get biopsy results late Friday afternoon we just start the new drug regimen and wait until next week for many answers. I do know another biopsy will be scheduled in 3 weeks. Hopefully the rejection is thwarted by the nasty prednisone and life can get back to normal again. But for now the roller coaster continues...