Obamacare/Medical 2016/One Woman’s Opinion
By – Sheri de Grom
Dear Readers, I wrote this blog last Oct and found it sitting in my draft folder waiting for a picture or two to be added. The medication I write about in this blog had serious side effects. The medication attacked Tom’s kidneys and he’s now in stage 3 kidney failure and just as he was gaining a bit of strength in his legs, the medication zapped most of what had been gained. However, as the New Year begins, we have much to be thankful for. We were home together over the holidays and that doesn’t happen often. We cherish each and every time.
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It’s Oct. 31, 2016 and instead of writing in my journal, I’m writing to you, my fellow
I’m sitting at Tom’s bedside wondering how many things can go wrong with this hospital admission and praying the tragedies will be minimal.
It doesn’t matter who I talk with in this healthcare setting.
When I ask medical staff what they believe is wrong with our healthcare today, they are ever-so-quick to reply “Obamacare.”
I always ask for additional thoughts and they look at me incredulously as if, ‘isn’t that enough?’
I agree it’s more than enough reason. Healthcare as we knew it is gone and I don’t expect it will return in our lifetime.
Once the bureaucrats made mincemeat out of our healthcare, medical providers perhaps thought they had free reign to do whatever they wanted. Doctors, nurses, researchers, etc. have their hands tied to practice real medicine. Is that when the morality of those practicing medicine broke down? Could frustration be the cause?
Not everyone fell to despair. There are those that retired or changed professions. There’s my internist I’d respected above all others who retired because he couldn’t care for his patients the way he wanted. One of Tom’s cardiologists went into research and my 2nd internist said the heck with all the paperwork and is now in charge of tele-medicine for The Veterans Administration.
Good can still be found in the medical profession the same as the princess who’s still looking for her prince. You have to kiss a lot of frogs before you find the perfect medical professional to serve on your team.
We now have another hero in our world of medical care for Tom in conjunction with Tom’s psychiatrist at the VA. Now, Tom’s pulmonologist is also our hero. He’s picked up the medical pieces as Tom’s previous infectious disease doctor dropped the ball and didn’t monitor his infection properly.
Everyone talked about the former doctor’s ego but I never thought it would get in her way of treating Tom to the best of her ability. She was not following the standard protocol for keeping an eye on the progress or lack thereof of fungal growth. Unfortunately for Tom, the medication she prescribed hadn’t helped; the fungal infection kept growing and choking off Tom’s ability to breathe and swallow.
Had she followed the standard protocol, Tom and I could have avoided a mountainous source of pain and agony. The protocol calls for once monthly x-rays and tests and she wrote Tom a prescription and said come back in a year! He could have been dead by then or the disease would have consumed his entire body considering the comorbidities he has. She didn’t have the magic bullet to fight this horrific fungal infection [histoplasmosis] and especially since Tom’s immune system is shot.
Tom’s pulmonologist graduated from the University of Damascus, Syria and followed with a fellowship and teaching post in London. I asked why he didn’t stay and practice medicine in London and he said, “I took an oath to help my patients. In England, everyone goes on a waiting list and then they die.” He further told me Tom would have been dead years ago under any other healthcare system than ours.
I have no idea what I would have done with this episode of Tom’s illness if the pulmonologist hadn’t been available. He was to leave town with his family for a month’s vacation but he sent them ahead of him and came in to see Tom daily and sometimes twice a day. He’s a doctor who means what he says and then sticks to it. He also doesn’t care about Tom being bipolar and he likes the idea that I read and stay current about Tom’s many medical conditions. To win me over completely, he remembers my Bailey’s name.
We now have a new infectious disease team associated with St. Vincent’s of Little Rock and Mayo Clinic plus a new endocrinologist. We’re in the process of putting together a new cardiology team for Tom.
There’s no hope any of the new doctors will make Tom well but I do have expectations that they won’t kill him and they will help us make the right treatment decisions for him.
The inadequacies of Baptist Hospital of Little Rock and its staff never cease to amaze me. Tom was a direct admit on Friday and the admission to the floor took 5 hours. The room was supposedly ready before we left the doctor’s office [15 min. away] 6 hours earlier. Direct admits are sent to the floor immediately as the basic medical information has already been transmitted to the hospital and the only thing I should have had to do was sign the paperwork giving permission to treat and agreement to pay for anything our insurance didn’t cover.
On an earlier comment someone asked why we didn’t use another hospital and I’m working toward that goal. We’re stuck with Baptist Hospital of Little Rock now because that’s where Tom’s pulmonologist makes rounds. We didn’t want a hospitalist caring for Tom as we’re in the process of building a new team of specialists.
A main requirement for the new team is that they do rounds at a hospital where we’ve had good experiences. However, I’ve heard that hospital is hurting in customer satisfaction since we were there last. What is a caregiver and a sick patient supposed to do when care becomes so advanced it can no longer be provided in the home?
Tom was in the hospital Oct. 28 – Nov. 4, 2016 receiving daily infusions of liposomal amphotericin. He’d already been on voriconazole for 8 months and his histoplasmosis was worsening the entire time.
It seems every new medication comes with its own myriad of problems. The liposomal amphotericin is an old drug and is both expensive [over $1,000 per IV bag] and toxic [Tom’s kidney’s have reached their tolerance limit].
While Tom was in the hospital the doctors ordered a daily infusion for 7 days. The horrifying reality is that the nurses hung 3 of the 7 bags but never turned them on. Tom missed those doses and the next shift to come on threw the room-temperature bag in the trash.
I can hardly wait to receive an itemized bill for this hospitalization. We saw 3 bags hung and then all 3 were thrown in the trash. Is it any surprise health care cost so much? I will be reporting this expenditure to Medicare. It’s a minimum of $3,000 wasted medication plus 3 days hospital rate of his being an in-patient. The hospital deserves to hurt on the bottom line for such negligent behavior.
I stayed at the hospital for hours on end and during 1 period it was 5 ½ hours between the time one aid came into his room and then the next one. It is inexcusable to leave any hospitalized patient alone for 5 ½ hours.
Tom’s a fall-risk and they didn’t want him getting out of bed alone. However, he’d waited 2 ½ hours one night for someone to help him to the bathroom. No one came.
Tom got up by himself and of course he fell, even using his walker, as they had cables strung across the room. As a result of the fall he has 4 broken and 2 bruised ribs, a gash over his left eye and a twisted right wrist.
At the one week mark of infusion therapy the doctors decided Tom could have the remainder of his infusions at home and a Home IV Specialist Service would deliver the supplies.
If I only relay one message in this blog post, it is this:
TELL THE SOCIAL WORKER NO
The social worker told me I would have to give the IV Therapy to Tom myself and they would teach me how. I immediately told her, “NO YOU WON’T!”
She insisted it would be no problem because Tom already had an internal jugular central venous catheter placement with 3 lumens. She continued, “We’re sending you home with an Anaphylaxis Kit so you have nothing to worry about.”
“No, No and No. What part of No don’t you understand? Are you telling me that Tom could go into anaphylactic shock when he’s getting this infusion?”
“Yes, it happens during the first 15 minutes of treatment if it’s going to happen.”
I’d had enough. “Go review our insurance policies and figure out where Tom will receive this necessary medical infusion and who will administer it. IT’S NOT GOING TO BE ME.”
Remember, the doctor had written the care plan for Tom and it included at-home infusion therapy. The orders did not say who or how it was going to happen.
You have the right to say no. The medical order has been written and “they” cannot leave the patient untreated. Trust me, they’ll think of something, they have no other choice.
You have a choice, they don’t. Use Your Voice.
All last week, 7 days, Tom received his treatments here at home. It wasn’t all smooth sailing but once the problems of who/what/when were worked out, there were no problems.
Imagine being responsible for medicating the love of your life and knowing you faced the possibility he’d die in 15 minutes. That wasn’t something I was willing to sign on for and I don’t want you to think you might have to do it either.
I’m learning a lot on this journey with Tom [although I would have been willing to learn the information and pass it along without involving Tom and all the stress and agony that comes with it]. I’m current with most of the Federal Registers governing what someone can and cannot make me do and I’m sticking to the few battles we’ve won in this medical care nightmare.
In my opinion, we’re going to see a lot of change in the coming months.
I thank each of you for reading with me. I always appreciate your time.