I (58F) have been at stage 4 CKD since August this year. My story starts back in 2000 when I had endocervical cancer 2b. I had extensive internal and external radiation that fried my bladder. Over the course of 15 years it had become completely ulcerated and I was totally incontinent and having frequent UTI's. For the next five years I underwent every treatment imaginable and after very lengthy discussion, research, second opinions and prayer, we decided on a cystectomy with conduit diversion and Urostmy in May 2020. That day forever changed the course of my life. I had problems from day one after that surgery. The primary issue initially was jejunum syndrome and subsequently AKI and CKD. I ended up with a second Urostmy and two nephrology tubes by December 2020. I had no previous kidney problem prior to this. I stayed at stage 3 until summer 2021 (nephrology tubes removed at my request to to frequent infections adjacent to where the tubes were located). In June, my GFR dropped to 17. It has come back up to the 22-24 range since August. My primary symptoms (which my Nephrologist says is not related to my CKD) is extreme fatigue, weakness, loss of appetite (weight loss of 80 lbs in past 12 months), shortness of breath (bad), PEMS, many antibiotic resistant UTI's. I have been hospitalized 16 times in 23 months). I take Sodium Bicarbonate 650 mg (2 tablets the times daily... and was someone mentioned before they are huge). I also do home IV hydration (1L daily) in addition to constant oral hydration. I also have Crohn's disease which doesn't help matters at all. It was in remission for a very long time but had been building since December 2020 when I had a bowl obstruction following the second Urostmy surgery (hospitalized 21 days that month with a Ng tube... PTSD... As I was determined too weak and my body couldn't take the stress). I started on a 21 day short-term course of Prednisone and Asacol today to alleviate the inflammation. Well discuss what's next in January. My big question here is do we have to wait until we are fully in ESRD or GFR of <15 to get on a transplant list? I feel like I'm walking a fine line dangerously close but not quite there. My Nephrologist has already sent me to Dialysis Education at the local center so that I would "knows" what my options were when the time comes and not be forced to make any decisions in haste. I personally would rather begin that process and get on the lists because it can very well take years and years (if even) before it might possibly become available. I don't see my situation as one that will improve. Heck my GFR dropped from 38 to 17 so fast I was amazed. But only recovered sightly from that steep decline. Any thoughts? Probably a lot of wishful thinking on my part. I just have a need to have hope. (Thank God I have my faith as it has served me well they this trial). I was not scheduled to see my Nephrologist Shaun until late January but I put in a request for an appointment asap. I also have very regular visits with my urologist and gastro (with all records sent to my GP who I have been with since 2000).

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