Hello all! A lot of you have been following my journey through dialysis and recently transplant, and I really appreciate all of the support that you've given! I celebrated 6 months post transplant on 7/8/19, and after lowering my tac to 6mg daily (3 pills 2×/day), switching from Metoprolol to Losartan (12.5mg), lowering my Kphos supplement to 3 pills 2x/day instead of 3x/day and lowering my antidepressant nortriptyline to 25mg from 50mg and adding Trazodone 25mg for sleep, I've improved immensely. My blood pressures have stabilized and read lower than when on my previous blood pressure medication. My fatigue and tremors have been steadily improving and my mood has become more positive as well. I met with my counselor today, and she feels that since I've met all of my goals for therapy and given that I've been going regularly for the past 4 years that I would benefit from closing this chapter in my therapy and focusing on moving forward.
My labs look fabulous as always, which helps keep me going when I end up off track. I'm excited about this turn of events especially, because I have to turn my attention to other medical issues that have needed to take a back seat for many years. Unlike many cases, my kidney disease was caused by a rare congenital medical condition called VACTERL. I have everything but Limb abnormalities, so besides having renal disease, I have neck/back/hip issues, digestive/excretory issues, a backwards heart, and a successful trachealesophageal fistula repair with low motility (sometimes my esophagus stops working so no solids).
I'm very lucky in that many of my health issues were resolved with surgeries, but of course not everything was completely repairable. Having a condition with so many moving parts, as many of you know, is challenging. However, having my renal issues resolved is giving me the space and time to tackle those other parts. Yes, there are days where my only source of food is watered down shakes and, yeah, I always know where a bathroom is when I leave my house! I rock a crutch and/or a boot with at least one brace some days too (thanks old kidney), but having a working kidney makes all of it easier- and my shakes a lot tastier.
A Simple explanation of the inaccuracies of eGFR
Update
Frustrated by Kidney Transplant Evaluation
First Face-to-Face With Other CKD Patients
