My blood is boiling more than it ever has in my entire life.
A bit of background: my dad has two dr’s- one who is the overseeing physician of an ARDS study my dad was enrolled in (Acute Respiratory Distress Syndrome). The other is the attending who manages the day to day.
All week we have been told the same thing- he’s not improving, he has had problems with high blood pressure, low blood pressure, GI bleeds, and he’s swollen like a river overflowing with rains from a thunderstorm.
The attending is a jackass- no feeling, no bedside manner, and the worst conveyor of information EVER. It was this prick that informed us he “might” have lung cancer, although the pathology report is conclusive. We discussed the options amongst ourselves and decided we didn’t want to prolong his suffering when there had been no improvement.
Around 3p I went back to Dad’s room by myself to say my personal goodbye. I told him I loved him, and though he wasn’t perfect, I was glad he was mine. I told him I would take care of mom, and that it was ok for him to go if he wanted to let go.
When I came back downstairs, mom and my aunt were talking to the other Dr. My mom looked at me and said, “Dr A says all is not lost.”
WHAT? WHAT?! I seethed and looked at all three of them with suspicion.
According to this Dr, Dad HAD been showing improvement based on the protocol for the study he’s in. He’s on a ventilator that is similar to that used on newborns/preemies. Instead of a deep, sustained breath that can stretch the lungs and cause more damage, they use shorter, shallower breaths. Dr A said that 10 is the starting (and worst point) on the study protocol. 1 is the best, and the point at which they wean the patient off this machine and onto the regular one, with the intent of reducing the sedation and attempting to wake the patient. Dad is a 3.
He also seemed to think the cancer diagnosis wasn’t correct, and cited some 7 year old Mayo clinic study that 3% of all cancer diagnoses from another hospital secondarily reviewed by Mayo were found to be wrong.
My silent answer was SO FUCKING WHAT? All that tells me is that 97% were upheld!
I cannot imagine Dad surviving this only to have to go through awful, painful treatments to try and beat lung cancer.
It’s all too much.
I said goodbye, and now I have no idea if that was real or if we almost killed my dad. I feel like Dad is a lab rat to one man and a faceless number to the other.
Argh. How frustrating! It’s really hard to think of things like this objectively, but my unsolicited advice is to think about quality of life vs. quantity, and to try to make a decision based on what’s best for Dad and what he’d want, even if that’s a hard decision to make. Convincing others to do this may not be easy, though.
I’m sorry you’re getting pulled in so many different directions.
Good lord, no one should have to be put through this nightmare. I am so sorry, Lach. I wish that I was able to offer words of advice or comfort. Just be strong and do NOT let the medical folks get the better of your sanity.
Egads! What a nightmare! I agree with you that it certainly doesn’t sound like they know what they are talking about! All I can say is keep your head up and be with your Dad as long as you can be during this time. I’m sure he knows you are nearby and that has to be a consolation to him. Peace.
My heart goes out to you for the stress you’re under.
WTFF???!!! (that first ‘F’ is flying, BTW) Looking back at what happened to my father, I sometimes doubt whether it was worth all the suffering he went through. All the surgeries and chemo were devastating and sometimes I wish we had done nothing and just let him enjoy the rest of life without the extra agony.
Besides all the stress, I felt numb. I felt like I needed to release. I did things, mostly basketball, to take my mind off of things so I could stay sane.
I really feel for you dear. It brings back a lot of sad memories but at the same time, I have no regrets because I was able to say my last goodbye and tell the man who brought me into this world I love him.
There have been many times when I wondered if maybe the medical profession was just screwing with us.
I remember the horrible summer of 1978, when the ominous silence of some hyper-complicated fetal-monitoring system told us to expect the worst. We wept; what else could we do?
The next shift noted that the machine had been configured wrongly. Sheesh.
I’m just so sorry to hear this.