I rescheduled a referral to a neurologist today. Worsening neuropathy. I will need to add him to my list. General practitioner, pain management doctor, cardiologist, nephrologist, surgeon and now neurologist. It is a small list when compared to others'. I get tired of making appts and then being unable to go due to finances. I guess that's a lie. I get tired of going to new docs and having to go through my entire history and coming against roadblocks by uneducated and ill-informed healthcare staff. I hate waiting forever for the appt, with rarely an apology, but if I am late I am sent away. I disklike the entire process. Filling out the forms there is always one line that says "prior hospitalizations and surgeries and gives me about 4 inches. Really? In the last 11 years alone I've had about 15 surgeries. How do I write that down? The list of allergies (I have many) and the list of medications that always seem to overwhelm the nurses. Again, I dislike the entire process.
I get so tired of appointments that often I will reschedule several times. I should be called the rescheduler lol. There are times that I just cannot emotionally cope with going to see a doctor. It is stressful for me because I am so opinionated and educated about my own health that I have become ill at having to face yet another doctor (and nurses) who
A) know nothing about dialysis in general or
B) had a cousin's sisters friend's dad's step-grandmother who was on it so they think they know all about it.
C) know nothing about home dialysis
D) know even less about home hemodialysis.
E) know nothing about fistulas, grafts or chest catheters and
F) make quick judgements about how I came to be in renal failure
G) treat me as less than equal because I am the patient
For the most part the doctor spends about 5 minutes with me. Tell me would you how I can walk into a doctor's office who has no history of me except what he can gain from the papers I quickly fill out in the waiting room, a 35 year history of chronic kidney disease, an 11 year history averaging 15 surgeries and close to 30 or more outpatient procedures....how can a doctor possibly review all of that and treat my issues appropriately and properly with the little knowledge he has of me in less than 5 minutes? Yet, they do. Every day, not just with me but with countless other patients. Mind boggling isn't it? Then we wonder how mistakes can be made. Patients overlooked, wrongly medicated and those who slip through the cracks entirely are the results.
So, today I rescheduled an appt. I told her I wouldn't be able to make it. She asked me why? She asked me why, and before I could stop it the laugh escaped my mouth. Not a big heart laugh, just a one short laugh that sounded more like a HMPFF. She was a bit frightened I think at first but waited for my response. Dare I tell the real reason? I take a deep breath and say "I just can't make it. We live an hour away and I need to bundle up all my appts on the same day to conserve fuel costs." She was satisfied but sure to tell me she was making note of it in their records. HMPFF
When I was living in a different area I couldn't make an appt with a specialist. I was in the hospital. They sent me a bill for $50 and refused to accept me as a patient in the future.
Great going healthcare industry. People talked about rationed healthcare with Obamacare. Wake up people! We already have rationed healthcare. Dialysis patients are limited to 13 in-center treatments. They are not allowed to have any more than that. Do you know how they came up with that number? They gave patients 1 dialysis per week. The patients died. They then gave patients 2 dialysis treatments per week. Again, they all died. They moved on to 3 treatments per week. They all survived. Thus the 3X/week dialysis regimen was born. Nice eh?
As a home hemodialysis patient I am allowed to dialyze 5-6 nights per week. They don't give me a restriction on time so I lengthen my own out to a 7-8 hour treatment. Do I hate being on that long, sure. Do I love how much better I feel by doing these frequent and long treatments absolutely.
So now, its off to reschedule that referral to the neurologist. I expect attitude. I will have to hold my tongue. To them I am not an equal.
For the past two weeks I've been to a dentist and an eye doctor and had a mammogram. I will see my nephrologist and dialysis clinic team (dietitian, social worker, nurses). I will accompany my husband for a cardiac consult, see the dentist again, schedule a colonoscopy and then back to my general practitioner. My GP, Nephrologist and Pain Mgmt Doctor cannot agree on some of my meds. I am a proverbial ping pong ball between all three, sigh.
In October I see my Pain Mgmt Doctor and Nephrologist and travel to my Transplant center to meet with the Transplant Nephrologist, Transplant Surgeon, social worker, financial coordinator, dietitian, transplant coordinator, get CT of head, CT of abdomen, bloodwork (entailing 30-40 tubes of blood), echocardiogram and heart stress test, chest xray and panorex of teeth to return to active status on the list.
Tiring. So tiring. It could be worse. It could be much worse. So I take it with a grain of salt. The next time someone asks why I want to reschedule I just may tell them the truth. I am emotionally unavailable. Do you think they will believe me?
So, I call the neurologist to reschedule.
"Do you have a referral?"
"Yes, they faxed it over"
"Oh, I see it. Its 2 weeks old. We may not be able to accept this."
"Sigh. I'll call them again and have them refax it"
So, if you often reschedule or cancel or have to bundle all your appts into 1 or 2 days per month....you understand me. Happy Hump Day.
Blessings
No comments:
Post a Comment