In February 2016, at the age of 23, Brian started feeling ill and when he started having blurred vision, his eye doctor directed him to immediately go to the hospital. A bit confused he (thankfully) followed their direction. Upon arrival he was informed that his blood pressure was dangerously high. Once admitted he was placed in ICU so that they could closely monitor him. They begin a very intense round of medication and testing including a kidney biopsy.
In the midst of this very scary and uncertain time, Brian continued to remain calm (at least on a surface level….because he didn’t want us to worry) and tried to keep a sense of humor.
By this point…he was going stir crazy!
Finally a kidney specialist met with him and informed him that he was being diagnosing with IGA Neuropathy; a condition that typically has little to no symptoms and can go undetected for decades. They believe that Brian started to develop this condition when he was 12-13 years old. Once he was stable, they determined that his kidneys were functioning at 8-10%. They decided to try and maintain him at this level with medication and diet for as long as possible…
Nearly 5 months to the day, and just 2 weeks after his 24th birthday, Brian was back in ICU. Once again they were able to get him stable, but the discussion of dialysis and the need for a transplant in the future began.
In November Brian was admitted again, this time his kidney function was estimated to be 2%.
Over the next two weeks he prepped for and underwent surgery to have a catheter placed for peritoneal dialysis. Once placed he had to go through training classes to teach him how to safely connect to his catheter and machine… all while once again trying to keep his sense of humor.
Brian’s girlfriend Ashley posted “Today is the day to turn one page forward into a new chapter of health”
Though this was not the outcome we wanted, we were tired of seeing him suffer and were hopeful that with dialysis that he would start to feel better.
***********************************************************Fast forward 6 months, with great excitement my husband and I sent in applications to be a living donor. Did you know you can live with ONLY one kidney! They choose to test my husband first…he got to the very last specialist and was denied! We were devastated; he had made it so far. As planned I was the backup and my extensive testing began. In early December 2017 I was denied, but being my usual convincing, sometimes pushy self, I was able to get the donor team to agree to a 2nd opinion. Once again I was denied. They did not like my family history.
SO here we are in 2018, nearing the 2 year anniversary of his life changing diagnosis. We are trying to remain patient and positive. I know there is a bigger plan in play than what I can even begin to understand. Now we wait. We wait for someone else to come forward to be tested to be a living donor…or we wait until someone passes who is a match, who chose before they died to give the best gift of all, someone who chose to give the gift of life. I pray daily for my brother, and I also pray for the person who will change all of our lives. I can only try to imagine the weight of such a gift and the gratitude we will all experience.
Currently Brian is on our dad’s insurance. His out of pocket annual deductible is currently $3,500.00. He reached his out of pocket max in 2016 and in 2017. He will max out early in 2018, but in July he will turn 26 and will have to start on his own insurance. He will then face meeting another high deductible mid-year.
With his current insurance plan, his dialysis alone is costing nearly $500 PER DAY and his medications are roughly $100 per month. There are also the costs of; regular office visits, extra lab work, sick visits, missed work, and the unpredictable short stays in the hospital when his body throws a curve ball. All funds received will help ease the burden of this awful disease and allow Brian some financial stress relief.
Will you do me a favor today? Will you share this story? Will you help me help my brother? There are people in your circle that can relate to this even if you don’t know it. We kept this very quiet as a family until we all had a chance to process and accept where we are in the journey. I now wish I would have told this story as it unfolded in real time. Will you help us?
If you are interested in learning more about being a living donor you can visit:
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