Ah—— it’s 2:30 AM and I’ve been sleeping uninterrupted since 930 pm. It feels like a miracle. They infused the high dose steroids about six pm last night. I worried so much that it would be another sleepless night. Tonight was the last night of the infusion. Tomorrow, I can go down to 60 mg of prednisone a day. Still a whopping dose, but seemed to have less effect on my mind and body. For the first time in my life, I actually asked for a sleeping pill. It was a drug called Rameteon. This drug mimics the effects of melatonin. I was either exhausted or the drug is a miracle! Of course I worked to deal with the nurses, that I would be not interrupted for checks or blood pressures. The room has entirely dark and silent. The continuous fan that is blowing overhead actually mimics the sound of the sea, a great memory of my childhood. Upon awakening , feeling this refreshed, is something that is seems so simple but wonderful.

I’m actually looking forward to the day!! the pain from the insertion of the deep tunnel catheter has diminished. The urinary catheter, is less bothersome, and still working!! There is actually normal looking urine in the bag and how exciting is that! I think all the thoughts and prayers that have come my way must be working!

The first big event will be to see if my creatinine has come down. I completed two infusions and my body has been blasted with immuno -suppressives. Who would ever think that would be anxious to have another needle put into my arm to have blood withdrawn and then wait for the results to see if there’s any hope that these kidneys will turn around. That’s another three hours so I guess I will check my emails and my patient records to keep my mind off of this. I can’t wait to see my favorite phlebotomist!! They are very good at drawing blood here as they’re able to find the vein in my koi now very bruised arms. There is a little pain due to their expertise.

I’m sure glad the nurses didn’t check on me though. They put me on the scale yesterday. Since I’ve been in the hospital, I’m up 22 pounds in water weight. I lay in bed with my bulging belly and swollen legs. I guess I appear as though I have beached myself like a bloated whale, although still alive!! Who could imagine me, gaining 22 pounds in less than a week! I know you are laughing. All my nutrition courses, handouts, lectures can’t fix this one!!!! Seems impossible! I know it’s not fat weight cause I’ve hardly had anything to eat!!! My body has changed. When I look in the mirror, I say “this is not me“ oh no. New clothes again after I had just achieved my goal weight of 158 a month ago. Now 177 and climbing!!!! Yikes!!!!

The rest of the day will be this new routine! It appears that i will be awakening early, with the ferocious energy like I once had. This seems to fade by about 9 AM. At that time, the nice man I mentioned will wheel me to the dialysis unit. We’ll navigate through the maze of cluttered halls. They will exchange my plasma. They will try to remove these nasty antibodies from my body so they’ll stop killing my glomeruli. I asked the dialysis nurse to make sure they throw those antibodies deep into hell.

During my energy charge this morning, I’ll be looking at all of the data. This data has flowed into your medical records. I’ll review all of the consultant notes of doctors you’ve seen making sure everything‘s tidied up. It sounds as I shouldn’t be working. Yet, as long as I’m feeling halfway good early in the morning, it’s something to do. I surely miss my interactions with my patients every day. I’m most jealous now when I see so many normal labs with normal creatinine, the kidney test. Mine were always normal!! The anticipation of reviewing my own labs it’s overwhelming! (My nurse, just poked her head in the door, asking me if I had been awake all night—joyfully I just told her it was a night of a miracle—-six good hours! She was compassionate as they all are and happy for me!).

The hardest part is not being at the office for and my patients. It’s all I know really know. But I’m hopeful I’ll be able to return once this madness is completed.

This beached whale has not given up and I’m looking forward to a brighter day and hopefully some better news.

I’ll keep you posted.