This post will be about my life being different than a normal person and other information about Spina Bifida and related information, also of note is that next month, October, is Spina Bifida Awareness month which most people aren’t aware of. I will be updating this as I find more and more information about this part of my life.
I was born in January of 1986 with Spina Bifida which as, and will continue to affect my life in all kinds of ways, some of which I will discuss here with updates as things happen.
I was born with a severe form of Spina Bifida and I’m in a wheelchair because of this.
Also, one of the things that tend to go along with Spina Bifida is Hydrocephalus. This is a condition in which an accumulation of cerebrospinal fluid (CSF) occurs within the brain. This condition is treated by implanting a shunt from the brain typically to the stomach although can be placed elsewhere.
Over the years I have gone to the doctor a countless number of times. At birth to close the opening in my back that happened from the Spina Bifida and to insert the shunt mentioned above. Then for yearly checkups until things started happening again in my late teen’s early 20’s.
It was at that point that I started to develop kidney issues and had to see a kidney specialist regularly to keep an eye on things. Then in my mid 30’s it was discussed that my kidneys were failing and I would soon need a transplant. In my case with talking about it early we were able to test family members to see if one had a match with me for a transplant of which I was lucky that my father was a match for me. So, we started the process to get all the tests needed and get the transplant before things got to a point where I would need to start dialysis. This process lead to successfully having a transplant in 2018 and now I’m healthy again as long as I can make this kidney last.
If I weren’t able to find a donor for a new kidney I would have had to go on dialysis, which is a procedure where they typically hook you up to a machine 3 times a week for several hours to go through the process of removing excess water, particles, and toxins from the blood. This is the same process that constantly happens in the kidneys 24/7.
information sources
Some of the information stated above is sourced from the following sites:
https://en.wikipedia.org/wiki/Spina_bifida
https://www.mayoclinic.org/diseases-conditions/spina-bifida/symptoms-causes/syc-20377860
Leave a Reply