I am “just” a mom . . .
This week I was able to coordinate the placement of a port for my 22 year old.
I did that with no medical degree. No administrative background. The only skill I have for this task was experience and patience.
In fact, when I was on my third call to find information from the Interventional Radiology Department at our local hospital, the young woman on the phone so kindly said, “your doctor should be doing the coordination for you. Your specialist should be calling around to find the steps to take to get this done. You should not be the one making this call, gathering this info.”
Right . . . (with great sarcasm)
What I wanted to tell this young woman was, “You are completely right! I am so frustrated right now I can barely speak straight.”
My beautiful daughter is an adult with a chronic illness no one can label. She is trying to get through college so that she can have a life outside of being ill and can earn a wage and do something she enjoys. So that she can be around people with similar interests and build herself a life that she wants, independent of this crappy autoimmune related ill-defined, under researched condition she has.
She has been fighting for over 7 years now. And for the last several years her health has been declining. We spent over a year finding a doctor that could help. No luck. We finally found a nice specialist that referred us to another specialist that usually only deals with pediatric patients. This pediatric specialist, does not usually take adults, but decided to help her and we are so thankful for that. She is finally getting infusions that are in the early stages, but seem to be helping. She seems to be making some progress toward less pain, less fainting, less GI issues, less fatigue. It will be a long road, and the infusions leave her exhausted and with about a week of recovery time, if she is lucky, but she needs to continue getting them.
This is why she desperately needs the port. Her veins don’t support the infusions well and the last time she was in the hospital for the infusions, they had to poke her 6 times, left bruises up and down her arms, and caused horrible pain.
Remember the pediatric specialist I mentioned?
He always has his pediatric patients have their ports placed under the supervision of a pediatric doctor he works with. That pediatric doctor does not take any adults. Period. In addition, our primary care physician is retiring in 3 weeks, meaning she cannot order the port placement without someone that can maintain it. This leaves our pediatric specialist at a loss. I told him I would call and track down how we could make this happen. So, that is what I am doing.
I took a deep breath and returned myself to the call. I called you, so help me.
Yes, he should certainly be taking the role of health care provider right now. And he is not.
“I know, however, this is a unique situation. And at the moment, I need help to get this moving along. Can you help me?”
She put me on hold, spoke to her manager and came back on the phone and gave me a plan to give my doctor. A two step simple plan that I was able to call the doctors office and convey to them. And that was how my Wednesday morning went. I could repeat how it should not be this difficult. But it is. So I will merely focus on this:
I coordinated medical care for my daughter.
And I am not a doctor.
Just an advocate.
Just a mom.