Jason's Story: Because I Can.....Believe Told by Skyler Hrabe
I will never forget the feeling of utter helplessness, despair and disbelief as the realization dawned on me that my husband, Jason Hrabe, was going to have to prepare for the fight of his life. Earlier this year our main focus was on starting the family we had always dreamed of and beginning the process of searching for a new home. Unfortunately, those dreams quickly became the last thing on our priority list as we learned that Jason’s health was compromised and we needed to start down road to recovery immediately.
This all started about a month ago when Jason went into the doctor’s office to discuss some ongoing symptoms of headaches, tunnel vision, fatigue, and dizziness that had consistently presented themselves over the previous week. The doctor thought his symptoms may be attributed to neck tension, yet performed routine blood work to ensure there wasn’t any other underlying cause. Later that night, Jason’s physician called us and told us to head to the emergency room immediately because his hemoglobin dropped to 5.5. For those of you that don’t know, a normal man has a Hemoglobin level of 12 – 14.5. That is where his journey began….
Unfortunately, several weeks later, the doctors at Minnesota Oncology did eventually diagnosis Jason with a life threatening rare blood disease known as Paroxysmal Nocturnal Hemoglobinuria, or PNH. PNH is a RARE (seriously – one in a million), life-threatening blood disease. In addition to this, Jason is showing signs of bone marrow failure as well. There are only two treatment options for those with this disease. The first is a recently developed drug called Soliris, which Forbes has deemed “the most expensive drug in the world ($450,000 annual cost) and the other is a bone marrow transplant. Jason will begin treatment with this drug once he gets the appropriate immunizations and then we will start our search for a bone marrow match.
In addition to the expensive medication he will start on, we will be faced with the hardship of the Bone Marrow Transplant process as soon as a match is found. Jason’s Bone Marrow Transplant will be performed at the Mayo Clinic where he will be hospitalized just prior to the transplant and 30 days post transplant. He will also need to maintain residency within 15 minutes of the transplant center for a total of 90 – 100 days post-transplant until engraftment takes place (Engraftment means that your bone marrow and immune system is beginning to recover. Throughout the process Jason will not only lose all of his hair, but he also has a high probability of becoming infertile. This is devastating news to us being that we have been hoping and praying for a positive pregnancy test over the last few months. His treatment plan will also render Jason unable to work for the next year depending on the success of everything, so please reach out to him from time to time as TV shows can only do so much to keep someone sane.
Due to the complexity of this condition and the lack of a full understanding of it, this is just the start of his life long journey to recovery, so please continue to keep us in your thoughts and prayers and check in with us along the way. With the generous support of his family and friends, Jason looks forward to a day when he can report that he is PNH free and healthy again. Please share his story and help us raise awareness of this rare disease. We could also use as many thoughts and prayers that we can get right now, so please think of us throughout this difficult journey!