I had an appointment yesterday with my motility specialist, and I have to say that I am having super mixed emotions about how the visit went.
So, historically, their office has been mismanaged, understaffed, and unequipped to support their giant patient demand. This, coupled with the fact that the specialist is a renowned and extremely tenacious research physician for those with motility disorders, has made getting treatment really slow and arduous. Getting things approved, scheduled, and completed was a nightmare. I have usually had a long wait time between appointments and further scheduled appointments, so I went into their office yesterday feeling a little comfort in knowing that I was going to have some time between my appointment and any treatments that would be scheduled. Well, that didn’t happen.
My provider and I sat down and began to discuss my symptoms, test results, and antibody levels, similar to most visits. She adjusted my neurostimulator and said that we would go ahead and get the plasmapheresis scheduled, as well as an updated gastric emptying scan and subsequent pyloroplasty. I am totally okay with all of these therapies, and am excited to maybe find some symptom relief. However, I thought it would be at least a week before they called to schedule something. No more than an hour after I left, the scheduler was calling to set up my week inpatient to receive plasmapheresis. Their excuses in the past for things taking so long were always about insurance approvals, prior authorizations, scheduling a room, etc. We agreed on scheduling it for the first week in August, since there is a lot going on in July for me that would make a weeklong hospital stay impossible. I hung up.
So, here I am, one day after my appointment, and I’m staring down a weeklong stay in the hospital, an updated six hour gastric emptying study, insertion of a permacath, and a pyloroplasty. I am obviously nervous and not excited at the idea of spending so much time in a hospital, but I am so glad that things are actually being submitted, approved, and scheduled in a timely manner.
However...
I can’t help but to feel a little frustrated and sad. It’s hard to believe that after nearly five years of being a patient they are just now becoming sort of competent beyond physician care. I just don’t understand what took so long for them to finally realize that the practice needed the help and needed staff members that were able to do their jobs to the degree that is required. I have so many friends that are also patients at this office, and they are facing these same issues. It makes me so sad. It makes me feel like screaming at anyone who will listen that we need help and treatment in a timely manner, but I realize that I would never be allowed into the offices of those who are truly in charge of what resources a group in the hospital receives. I guess I just have to be thankful for the opportunities that I’m being given and spread the knowledge to other patients.
It’s just really hard to feel thankful when so many other people are suffering.
