I can still remember my first real hospital visit. I believe I was 6 yrs old. As I understand it, I had a hernia and there was an issue with my kidney tubes being twisted. That is my first memory of knowing I had a kidney issue. I was told that my kidneys didn’t develop properly and one may not have developed at all. It wasn’t until much later, 19 I believe, that it started affecting my life. I was planning to have my first child and I attempted to get life insurance only to find I had high protein in my urine and they put me in the high risk category. I’ve been seeing a nephrologist regularly since then.
For the next 20-25 years, my visits increased from yearly to quarterly as my blood test continued to show a slow decline. I began taking blood pressure medicine to prolong my kidneys. My doctor occasionally would talk about doing a biopsy, but always decided it would be better to just leave them alone. A biopsy may give us a name of the condition, but wouldn’t change the treatment, so there wasn’t much point.
In 2015, my GFR dropped in to the teens and we began the process of kidney transplant. At this point, I just started to notice the affects of my condition. Late nights had a greater impact on me and I find myself getting short of breath easily. Not the funnest thing to realise when you are used to being full of energy and not easily tired. I remember following a group up 5 flights of stairs to look at a project. The pace wasn’t too fast, but by the time we got to the top my head was spinning. I about had a panic attack, I couldn’t pay attention to what was going on, it was all I had to remain calm and recoup my breathing.
So, now that my GFR is under 20, I am officially placed on the transplant list. I start having monthly blood tests and get a full work up once a year. Overall, still mostly healthy, working full time and taking trips to Great Britain and Punta Cana. It wasn’t really until spring of 2017 that I really knew things were not right. Pretty much never feel rested. Even after 8 hrs of sleep, I feel like I didn’t sleep at all sometimes. I get light headed, sometime dizzie. My kidney function varies and I can tell it now. Some days I’m just in a haze, overall something is not right feeling, never really sick like the flu or anything, maybe more like a mild pain killer foggy feeling. I get exhausted easily.
I’ve had several of my family member offer to be my donor. All 3 of my kids and my cousin Erika showed interest. Lorean was originally my first donor option. In the second round of testing, they determined he had an irregular heart beat and took him off the list. Then my brother, Clay, tests and comes up a perfect match. It took a little while for things to progress for his testing, but once they did, they seem to have really taken off and we are hoping to have the transplant done next month.
The closer it gets, the more real it all becomes. I look forward to it now. I know it will be a real life change being on all the anti rejection meds, but the only other option is dialysis and thanks to my brother, I get to skip that boat. I am very fortunate to have the support of my family and option that Clay is giving me. This will not be easy for him and I truly appreciate the gift that he is giving me.