Hello everybody. First, let me just say my heart is with you Houston. I am assuming that the foundation there will be needing some assistance so this month’s donation from HU will be going to the NHF Relief Fund.
I can’t donate a lot but I always try to donate where I can. Every dollar makes a difference. Stay strong everybody, as you know everything in life is temporary. That may not seem helpful when things are so bad, but if it helps to remember that, then it helps.
This month I’ve also been thinking about an Instagram post from istrive2thrive. He has a picture of a bruise from a poke from a phlebotomist. The phlebotomist didn’t comply to his request for a higher gauge needle and he ended up bruised, swollen and bleeding.
This reminded me that we need to learn our lessons, share our stories and stick to our guns. It also brought back some real life education I have learned in our hemophilia journey. I wanted to share two personal stories about how I learned to push for what I want.
These are my experiences, but if some of you are going through something similar, I thought maybe you could benefit from hearing some of our story. One of the stories is written below. Both of the stories are in the podcast.
When I was brand new and freshly inducted into the Hemo Hana, we were on an important study. After it was over, I was put on a factor. For years everything seemed fine. But as my little boy grew, the factor didn’t seem to be working as well as it once did. His legs were covered in massive bruises, almost always. I kept being told that bruises are normal for kids, but looking around the playground, they did not seem too normal, even for a Hemo Kid.
By that time I had done my research and requested to switch medications. At first I was told to increase the dose or change the factor schedule and I did go along with that. I knew in my heart that wasn’t what I wanted to do. Buy, logically, why wouldn’t we try that first?
Over six months, to a year I repeatedly asked for a specific medication and was not ever given the prescription that I wanted. With each visit or email or phone call I would request information on a new medication, or an outright switch. Each time the subject was broached, I decided not to fight for it and to just try again when I would call back in another month.
As luck would have it, I decided to move. Landing in my new town with a new doctor I was extremely adamant on the new product that I wanted. We finally got our new product and it was incredible. I immediately saw a difference. There were no hematomas covering my kid I could actually see his legs again. It was such a drastic difference I was shocked.
Then, I immediately kicked myself for not being more firm and getting the meds switched. Hindsight is always 20/20 but my kid have could have been bruise freer for a year earlier, had I just pushed a little bit harder.
So in relating that story the only thing that I am trying to convey is that for me personally switching or changing something in my son’s care ended up having a hugely beneficial result. I encourage you all to do your due diligence do your research and then really put your HTC team to task as a partner in the care you receive.
You along with your team your medical team are exactly that: a team. If something doesn’t jive with you then you need to push get the answers that you want and keep asking questions until you’re satisfied that you have exhausted everything.
There are a lot of choices out there and I know that insurance is being really funky lately but if your decision that you made five, six, ten years ago isn’t working, there is no harm in doing more research into something else. Whether it be a new product or a new regimen. Things change and I think that we sometimes get a little complacent in our care.
You all know your body, or your kid’s body, if they’re younger. Don’t be afraid to ask for what you want.
Make sure that you also document everything. I’ll give you what I do which is pretty basic. When I started asking for the new Factor, every single nose bleed, every single incident at school it’s all in my yearly calendar. It is a old school 99 cent store weekly planner and it has every single thing I need. It’s where I record all of the school meetings that we’ve had and everything that pertains to my son’s health. Personally, I find it more accessible and easier to search because I am so used to my paper planner. I realize that there are tons of apps out there that will probably do the same thing and if you are an app person then please start utilizing your app to it’s fullest potential.
And there you go. For our other lesson about professionals who poke, listen to the pod 🙂
If you’re in Tucson, I would love to meet you I’ll be at the annual meeting make sure that you stop by and say hi.
Thanks you all! Have a wonderful day.
Mentioned in the Pod:
VWD Summit in Peoria, AZ Sat. Sept. 23, 2017
Thanks to this month’s sponsor: