Just wanted to share an update on Billy’s ongoing health issues. I know it’s been awhile since I posted. Honestly, it’s hard to even know what to say when we still don’t have the answers we desperately need.
He has several chronic conditions that are being managed fairly well. Unfortunately, he still isn’t able to work. He continues to deal with sporadic episodes that are scary, dangerous, and cause more problems than I can even put into words. He is on multiple medications to help control the blood pressure spikes that come with these weird events. Thankfully, they usually keep his pressure from staying elevated too long. That helps us avoid constant visits to the emergency room!
He still experiences many often debilitating daily symptoms. Thankfully, he has learned to handle them better over the last few years. Isn’t it crazy what we are able to learn to live with and accept as our “new normal”?
God has given all of us the miraculous ability to adapt to unimaginable circumstances. With His help, we also have the strength to endure and overcome anything! Can I get an Amen?!
For us, the hardest part of this ordeal is not knowing what is causing these life altering episodes. They make him feel like he is literally going to die when they happen. It’s terrifying and mind boggling.
His Endocrinologist, Dr. Powers, has been a blessing. He has made all of the relevant referrals and ordered every test imaginable in an effort to find answers. Test results have been inconclusive. It has been beyond frustrating.
Last year, Dr. Powers told us about the Undiagnosed Diseases Network (UDN). There are only a few clinics in the U.S. One of them is at Vanderbilt in Nashville. The program is part of the National Institute of Health (NIH). Many different doctors and specialists across the country are involved. Their goal is to evaluate the patient and hopefully discover the elusive cause of undiagnosed medical problems. They review the medical records and history. Further testing is done as needed. They discuss everything as a group and hopefully find answers.
We were running out of options and ideas about what to do next. Dr. Powers suggested he apply to be a UDN participant. He told us not to get our hopes up because a panel of doctors would have to evaluate his records, discuss his case, and determine if he was a good fit for the program. They receive thousands of applications each year. They are only able to select a certain number at each clinic based on funding from a yearly grant. We filled out the application, sent in a recommendation letter from Dr. Powers, and forwarded all of his medical records and other items they requested. We prayed as we waited for their decision.
Praise God! for answering our pleas for help! He was accepted as a participant! They said he was the last patient accepted at the Vanderbilt Clinic under the current grant. We know that there is still no guarantee that we will get answers, but we have renewed hope!
Part of the process is genetic testing for him and his parents. We are waiting on lab kits to get that started. We were told that getting the interpretation of results could take about 6 months.
Understanding of gene involvement in disease is evolving every day. That is great because even if they don’t find concrete answers now, they may later. As genetic research expands knowledge of how certain variants effect health, they may discover the cause of his problems in the future. If that happens, since he is in the program, they will contact him. Even if it’s years from now! Medical science is changing and expanding daily. We are optimistic that this will finally provide some answers and help.
God continues to open doors and provide for our every need during these uncertain times. We are constantly humbled by His love.
We are so thankful for this opportunity. We know that prayers have gotten us to this point. Please join us in praying that we will finally find out what is wrong, and maybe even discover a way to fix it!
If you would like more information on the Undiagnosed Diseases Network, check out their website.
https://undiagnosed.hms.harvard.edu/
Isaiah 40:31
But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary, and they shall walk, and not faint.
