I had to cancel my appointment with Johns Hopkins because I was sick. I’ve been sick since about last Wednesday night, but went to the doctor Thursday. I’m still recovering, but I knew even on Monday I wouldn’t feel up to going to Baltimore yesterday.
I also had to cancel another appointment with my center. When I called to reschedule them both, I was now told by the coordinator at Hopkins I would need to fax a doctor’s note to the office before they would rebook me.
I was nice on the phone, took down a few dates & the fax number.
When I hung up I blew a gasket.
Why a doctors note for a consult? For just meeting with a new doctor? I needed it just to reschedule an appointment that I had already set up & was just calling to move because of illness. I gave them 48 hours notice in cancelling. Which I wouldn’t have had to do.
I was done then.
I’m done chasing records, done chasing notes.
I am not going to pay another copay for a note from a PCP who has just started to treat me (since my other left) to act as a permission slip to just talk to another doctor at another center.
I’ve done enough bureaucratic tangling & done enough calls with both my insurance & with scheduling appointments & getting information.
I’ve dealt with three centers for transplant services in the past year & half.
Two have made it next to impossible to even get my foot in the door & given me nothing but headaches.
They’ve created more work & stress in a time when I reached out for help.
I resent that.
One, if it has a problem actually confronts it & addresses it.
I know they aren’t perfect & don’t expect them to be.
This decision was not made in haste.
On top of the paper pushing, the resources just aren’t there. It would be 10 times tougher for me in a time when I’m already struggling.
Their hotels in the Hopkins area (even with medical rates) & an adjacent hospital house are at least double or triple a night what I pay at the either transplant house now.
I even booked an AirBNB reservation originally for the night of the original appointment because the hotel & parking (as an additional fee) were atrocious.
I also needed to be close to the hospital with the way I’m feeling.
I re-read over the packet they mailed me about the program the past few days. I was not satisfied when I stacked head-to-head.
This won’t do what I need it to do for me.
If they are throwing up blocks now scheduling appointments I don’t even want to think of what will happen post transplant with my after care.
If they did my surgery I couldn’t go to my current center in an emergency even though it’s closer. You have to go where you’re transplanted.
I don’t feel comfortable being that far away with doctors I don’t know.
It makes me extremely nervous.
I pursued this far enough to know what I want.
I will wait as long as it takes for my center to transplant me & take my chances.
I know I’m in good hands & want to keep it that way.