Zero sleep so far at 2:11am. Decided to write and study instead for a bit as I am still not clear to get up on my own. I did have some walks and chair time yesterday and each time up got easier to manage. The soreness is there but far less than Anna’s, I imagine. It’s less invasive to place a third kidney in the front (they don’t remove native kidney unless cancerous) than get one removed.
So, my mind is clear and I haven’t gotten angry or emotional as they keep warning me about due to super high-dose Prednisone. One of gifts Anna’s donation has given me is that I will be on half the meds with a living donor as opposed to a deceased donor. The prednisone is short term where it would rest of my life with a deceased kidney; unless one won the lottery and got the six-point match.
There are some stem-cell therapy research trials going on to “adapt” a transplanted kidney and even lower the meds more. No idea if and when that will be viable. These meds are expensive. We have good insurance and Medicare pays for the first three years. There is a movement to make this lifetime. The chief reason transplant fail after the first 100 days is due to non-compliance with medicine. People get in a bind and can’t afford it. I met with pharmacist yesterday and have another meeting with him and my caregivers Kenzie and Mom today. I have “book” of how to take care of Idunn which includes a massive section on Rx descriptions. And even have to take a test over this before discharged.
Dr. Samara is still saying Thursday looks likely to leave the hospital. We won’t go back to Tulsa but to my parents’ house in Cashion as I will have doctor visits and labs on Friday, Monday and Tuesday. If I get an all clear on Tuesday we will head back to Tulsa.
I will still have my drain ( a bulb that is grenade shape and size) sticking out of my side and my urinary catheter and my chest catheter at discharge. Although the latter may get pulled on Thursday morning if my labs continue to show a continually reduction in creatinine (dropped from 8.3 to 4.5). Doc said no more dialysis, likely! The drain is to collect the excess fluid and damage caused by surgery and draw it out of your body. I was fortunate in that I only have 1 drain. Most have 2 and a few have 3 based on abdominal fat. So, I am full of tubes, but If things line up with the doctor’s estimations they will all be out a week from now. Can’t lift more than 8 pounds for quite a while. We have heard 6 weeks and 3 months. So, while I am anxious to get my training back on track it will be a slow, steep road. We are starting to get a glimpse of the new normal.
Anna Cannington has offered to be part of this program. As a kidney donor with a nephrologist brother (not to mention next level human) she will be able to provide unique insight into "other side" of the transplant process. It is particularly apt for her to join up as she is Dustin's Donor. To schedule a conversation with either of Anna or Dustin just connect with either of us!
Dustin was diagnosed with IgA nephropathy (Berger's Disease) in early 2007. He and his family know well the struggles that come with suffering kidney failure, dialysis and the transplant processes. Born from these fustrations and Dustin's love of strengths-based coaching (centered on what is best in people) comes the Kidney Koach program. This NO FEE program is for Renal patients, their families and nursing staff that want support, understanding and a little help on the path.