Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
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….
Jason stayed in the hospital for a little over a week where a multitude of tests were performed trying to pin point the root cause for his symptoms. The doctors continued to monitor Jason over the next few days, still concerned because his red blood cells were breaking down, but also because his hemoglobin, platelet, and white blood cell levels were low and continuing to decrease as well.
After a week in the hospital, a bone marrow biopsy was performed. Upon receiving the results, we were relieved to find out that Jason did not have Leukemia or any other scary diseases that the doctors originally thought. There was no clear indication shown for all of his levels to be low.
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. This means he does not make enough red blood cells to carry oxygen, white blood cells to fight infection, or platelets to clot his blood –even the most minimal bleeding has the potential of not clotting. When his hemoglobin drops below a 7 he starts to become short of breath with the slightest activity and a common cold could take triple the amount of time to recover from. 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.
One of the single most important things that Jason can do right now is to see a specialist who is familiar with the unique needs of a PNH patient and seek the best course of treatment. I was fortunate enough to call the Mayo clinic and got Jason in with one of the best doctors around. The doctors at the Mayo are truly AMAZING and I cannot say enough great things about his care team. Upon meeting with our new physician team at Mayo, we learned that the only option for Jason long term will be a bone marrow transplant. Until that point, Jason will continue on the Soliris in hopes to control some of his red blood cell levels. We are currently praying desperately that his sister turns out to be a match, but at this point, we do not know yet.
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. Our doctor recommended seeing a fertility specialist, so that appointment occurred today and we are hopeful someday when he gets better, we can start the family we always dreamed of. On a positive note, for those of you that know my husband, you know his obsession with bandanas! Let's just say, he is going to be one stylish bald man 😘
This 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. We are both open books and willing to share information with anyone that wants to know. There are not a lot of support groups or information for those with rare diseases. I understand that is why they are called RARE diseases, but it can feel like a lonely journey when you don’t always have someone to discuss your fears, questions and successes with.
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!
For more information about PNH, you can to go the website www.aamds.org. In addition to this, if you are interested in becoming a bone marrow transplant donor, please visit the website https://join.bethematch.org,
YOU could be the reason that someone’s life is saved.