Myah's Transplant Journey

Hi, My name is Myah Bost. I am 27 years old. I was diagnosed with Diabetes at the age of 9. After that diagnosis, my life was completely turned upside down.

 

Over the last 18 years, every single day has been a struggle. From the time I wake up each morning until the time I go to bed at night, I am reminded of the limitations placed on my life by this disease. It is the type of disease that, while it ravages you from the inside - to most people, you might look perfectly normal on the outside. I often refer to it as the invisible disease.

 

While I have fought so hard not to allow it to stop me, this disease has proven that it cannot be stopped! Despite my best efforts to maintain my health, complications of the disease have caused me to need a kidney transplant. A local kidney transplant program has evaluated me, and I am a healthy candidate except for my current stomach issues.

 

Over the last few months, I have been hospitalized ten times for unexplained nausea, excruciating stomach pain and non-stop vomiting. The vomiting causes severe dehydration. The dehydration has led to more damage to my kidneys after every vomiting episode. This vicious cycle accelerated the need for a kidney transplant NOW, rather than in ten years, as my doctors previously thought.

 

Through extensive research, we have discovered that my stomach issues are caused by something called Cyclic Vomiting Syndrome (CVS). It is a rare disorder. It is often misdiagnosed, as it has been in my case. However, now there is hope for recovery. We have found a doctor who specializes in this rare condition. She is at a hospital 100 miles from my home at Ohio State University, which means I will need to make frequent trips over the next few weeks to get the help I need.

 

Once I get this treatment, I will be officially ready for transplant! Then I will be placed on the transplant list unless I find a suitable donor first. If I find a donor soon, I can go straight through the process to transplant without a long waiting period.

 

If you are interested in becoming my kidney donor, please do not hesitate to reach out directly, and we will get back to you with details about the screening process.

 

In the meantime, I need to raise awareness of the need for organ donation and raise funds for travel, lodging, emergencies, caregiver support and expenses not covered by my insurance. I hope you will help me and my family ease the financial burdens we will continue to encounter along this most challenging journey.

 

I can't wait until I can stand on the other side as a triumphant organ recipient and continue to build my life and achieve my goals.

 

Until then, each step along this journey will be made much easier with your financial support.

 

Please donate today.

 

Thanks in advance for your love, your prayers and your support!

 

Please also don't miss updates that will be posted frequently along our journey. Updates can be found at Myah's Caring Bridge Website or Katrina's Facebook Page.

 

If you would like to learn more about Cyclic Vomiting Syndrome, you can find resources at Cyclic Vomiting Syndrome Association.

 

The most distressing part of this journey is the repeated misdiagnosis, judgement and downright cruelty experienced by those who are suffering - often at the hands of doctors and nurses who are not familiar with or do not understand what CVS is and/or how to treat it.

 

When your condition is rare and misunderstood, it is incredibly difficult to get the diagnosis and treatment you so desperately need. You can hear other CVS sufferers tell their story here: Hear CVS Stories.

 

With love, Myah & Katrina (Myah's mom)