One of the warriors on the SCW Facebook page got me thinking about infusion centers. I haven’t used them at all myself, but the discussion launched by Niki’s comment prompted me to do some research.
An infusion center is usually affiliated with your hematologist’s office, outpatient center, or sickle cell clinic. [stextbox id=”alert” color=”000000″ bcolor=”690fef” bgcolor=”17e8db”] The purpose of the infusion center is to provide an alternative to hospitalization and reduce emergency room visits.[/stextbox] The infusion center starts an IV, gives you fluids, IV pain meds and sometimes even blood to ward off a crises. Since the nurses deal with cancer patients (and chronic pain almost everyday), they tend to be more empathetic and compassionate. [stextbox id=”alert” color=”000000″ bcolor=”690fef” bgcolor=”17e8db”]The best part, you don’t have to deal with the rigors, stress and mistreatment in the Emergency room~ Hallelujah:)[/stextbox]
Some infusion centers will allow you to come the same day you make an appointment. However, the bigger ones might have a higher flow of patients, a require an appointment sometimes days in advance. Many sickle cell patients stated that the infusion center really does help ward off a major crises. Treatment often begins within minutes of your arrival (no hourly wait times), and the center will follow your physician’s protocol and understand your unique requirements. If your situation worsens, or the crises doesn’t get better, they often can direct admit you to a unit in the hospital. SCADAA even recommends Day Hospitals (or infusion centers) over heading to the ED first.
To get set up with an Infusion center, ask your hematologist or primary care physician.
I live in the greater Baltimore City area in Baltimore, MD. I love the infusion centers and the service they provide to me which means my really really bad crying like a little girl crisis have been averted now for over two years.
It used to be very comfortable at John Hopkins Hospital until they added weekends (which is good news) and increased their hours of operation (also good news!).
So what’s the problem? You might ask. I answer with this: the weekend shift nurse who has a horrible attitude and has chosen to pick on me. She is always ‘sassy’, forward and very very combative. She makes it a point to whisper within my earshot and giggle/laugh all the way to my position.
Now, she’s just rude and says things (like I know your home medication work OR I don’t think you really need to be here) nasty, mean and derogatory to me. It has become so sad that she’s coerced the Physician’s assistant and Medical Assistant against me, making them overtly suspicious.
I finally capitulated during my last visit and said I would never go back there. I am considering making a formal complaint and I am considering legal action.
I still am a sickler, so I still hurt and last night’s visit to the ER reminded me of why I stopped going to the JHH ER in the first place when the first nurse said “I gave you oxygen and a wheel chair, why aren’t you using them?” after I had complained about waiting and getting worse (For the record: I was using them and I am on home oxygen treatment). Another nurse asked me what I took at home and was flabbergasted when I said 32 mg of Dilaudid every 4-6 hrs. She then turned up a while later with 8 mg of Dilaudid and was shocked when I refused them; thinking next time she has a very very bad headache, and the situation was reversed, I wish I was there to see her face and reaction when I offered her one half (1/2) of baby’s Tylenol or something like that just so she’ll understand what she was offering me.
My question for you is: Do you know of any other Sickle Cell Infusion Center(s) within the greater Baltimore City/County area or even near DC other than the one at John Hopkins Hospital because although they do a wonderful job quelling horrible Crisis attacks, I grow weary of the emotional, psychological and odd personal attacks.
I want to stay healthy, evade the worst crises and avoid ED’s without using the JHH infusion center where I love my doctor, the non medical staff and some of the PA’s. I don’t want to use this note as a medium for attacking the JHH SCIC, they do a wonderful job and provide an incredible service. I am just tired of that solitary nurse who declared war on me and has to a reasonable success turned my smiling face”ex-infusion-center-friends” blank-face neutrals and the neutrals into non-friendlies.
I just want to carry my ailments, weak heart and issues some place else. I would definitely appreciate your response. Again, I appreciate the list of Infusion Centers (like the one at JHH) around the Baltimore City/County Area and/or DC’s vicinity.
Sincerely’
Jason White