My phone rings Thursday, December 1st, at 6 pm. It's the nurse practitioner calling from the rheumatology office. She's calling to inform me that our follow-up appointment is scheduled for January 9th. In the meantime, we should start rituximab for our daughter's refractory thrombocytopenia.
So sorry to hear that you, your wife and daughter and your family are going through this and that you didn't get satisfactory follow up. Wishing you all well on this medical journey.
So sorry you, your wife and your little girl are encountering such grade of lack of compassion from our counterparts in medicine. You are in my prayers.
I know we aren’t the only patients who feel this way, but I also know it’s not entirely the clinicians fault. The entire system needs to change. We are learning. Thank you for the words 🙏🏽
I am sad to learn about your daughters condition and the things you had to go through. I agree, people in medicine should NEVER forget that they are dealing first and foremost With and FOR human beings. All too often the human aspect gets lost - something I just hate.
I so hope that you will make a way better experience at the Mayo Clinic and wish you the answers that will benefit your daughter - and give you the peace of mind that you deserve.
I hope she gets better soon but have sought any alternative advice. It’s hard when you work in med to think beyond the realm of prescription drugs but there are other viable options that may help. Wish her a speedy recovery & much peace mom/dad.
As a nurse practitioner, mother of 5 and parent of a child who had a rare disease, I feel for you on so many levels. Knowing the limitations of the system gives you a leg up on the many patients in the system who don’t even know what they can / should question and at the same time leads you to demand that the system function at an optimal level for YOUR loved one (as you would hope it would function for everyone’s loved one).
Mayo has been the shining light at the end of the tunnel for many people I know, the labs there were able to give us the definitive diagnosis of anti-NMDAR encephalitis for our daughter. Ultimately after plasmapheresis, steroids, and IVIG didn’t clear her “mild” case, rituximab was needed. But even with advocating parents and on-the-ball clinicians, it was still a months-long process requiring multiple hospitalizations, time out of work, rehab and extreme emotional distress.
I hope your family gets the active listening and attention you deserve from your next team. Parents know their kids best. Wishing you luck in your search.
Becoming a parent has been the best gift I could have ever asked for. It has changed my perspective on life and has given me a different type of empathy I can't put into words. When I read that your child had a difficult time getting the help they needed, it just breaks my heart. I appreciate your kind words and I'm wishing your kiddo continued health!
So sorry to hear that you, your wife and daughter and your family are going through this and that you didn't get satisfactory follow up. Wishing you all well on this medical journey.
I appreciate the kind words. It’s one big learning lesson for us all. 🙏🏽
So sorry you, your wife and your little girl are encountering such grade of lack of compassion from our counterparts in medicine. You are in my prayers.
I know we aren’t the only patients who feel this way, but I also know it’s not entirely the clinicians fault. The entire system needs to change. We are learning. Thank you for the words 🙏🏽
I am sad to learn about your daughters condition and the things you had to go through. I agree, people in medicine should NEVER forget that they are dealing first and foremost With and FOR human beings. All too often the human aspect gets lost - something I just hate.
I so hope that you will make a way better experience at the Mayo Clinic and wish you the answers that will benefit your daughter - and give you the peace of mind that you deserve.
I hope so as well. Thank you so much for reading and sharing your kind words.
I hope she gets better soon but have sought any alternative advice. It’s hard when you work in med to think beyond the realm of prescription drugs but there are other viable options that may help. Wish her a speedy recovery & much peace mom/dad.
We haven't as of yet. I'm always open to learning and educating myself. So, if there's any information you have, I'd be happy to read through it!
As a nurse practitioner, mother of 5 and parent of a child who had a rare disease, I feel for you on so many levels. Knowing the limitations of the system gives you a leg up on the many patients in the system who don’t even know what they can / should question and at the same time leads you to demand that the system function at an optimal level for YOUR loved one (as you would hope it would function for everyone’s loved one).
Mayo has been the shining light at the end of the tunnel for many people I know, the labs there were able to give us the definitive diagnosis of anti-NMDAR encephalitis for our daughter. Ultimately after plasmapheresis, steroids, and IVIG didn’t clear her “mild” case, rituximab was needed. But even with advocating parents and on-the-ball clinicians, it was still a months-long process requiring multiple hospitalizations, time out of work, rehab and extreme emotional distress.
I hope your family gets the active listening and attention you deserve from your next team. Parents know their kids best. Wishing you luck in your search.
Becoming a parent has been the best gift I could have ever asked for. It has changed my perspective on life and has given me a different type of empathy I can't put into words. When I read that your child had a difficult time getting the help they needed, it just breaks my heart. I appreciate your kind words and I'm wishing your kiddo continued health!