It has been a few days now since I wrote the post “my state of denial” . The response to that post has been astounding. I truly had no idea how much SO MANY OTHER WOMEN have gone through regarding healthcare coverage. I mean obviously I know it’s not just me, but when it is happening to you it feels very alone.
I thank all of you for your kindness and support, it means the world.
I write this once more from bed. I am circling over week three since surgery and although I know I am healing, I still have pain and the fatigue is unreal. People who know me know that for me to even say I am tired is a lot.
This is one of my favorite times of the year because this is when my garden emerges from beneath her winter covers. And while I can sit in a chair on my porch finally, gardening as in physically, is not happening. Even though my surgery was robotic, it was major abdominal and gynecological surgery, right? So when they say three to four weeks before easing back into a normal life, I am beginning to think they aren’t kidding.
Last night I woke up around 3 a.m. in pain. This morning I can really feel my internal stitches. And I am someone doctors say has a high threshold for pain. I guess that is true because given the size of some of the stuff that I remember them telling me they took out of me, some women would have been walking around in pain.
When I say “what I remember”, it is because I do not remember much at all from this surgery. When I had my breast cancer surgery I remembered a lot more details and my post-op was smoother. And that has nothing to do with my surgeons or surgical teams, because I know I have been blessed by having surgeons and teams that are the tops in their fields. But the hysterectomy surgery on March 20 was LONG and robotic and laparoscopic or not, it was invasive. And it wasn’t just in and out, they worked on me for a few hours. My sole memory of immediate post op when they first woke me up was brief, blurry, and full of pain. It wasn’t like that after my breast cancer surgery. But then again, this surgery took much longer than expected.
My post-operative care was hours, not days.
The pain was intense and very real. I did have allergic reactions to something because I remember my chest and upper arms feeling itchy and on fire (I was told they were red too) and my head and neck were swollen – and my neck wasn’t just due to having a tube in my throat. I remember my lymph nodes in my throat hurting and feeling pronounced. They gave me something to counter this reaction. Benadryl I think. I remember them also giving me heavy duty anti-nausea drugs in my I.V. because I was feeling so nauseated. And what do I remember about the pain meds when I got them in the I.V.? They made all across my shoulders feel hot as the drug entered my system. It was most unpleasant getting these drugs and I needed them.
And again, my post-operative care was hours and not days.
Does my insurer Aetna think for some messed up reason I didn’t want to go home? How about they see the reality that I couldn’t just sprint off the operating table and go home ? Do they think I am making this all up? Why do they treat my surgery like I had a hangnail removed ? Why do I feel like the hamburger from the drive-thru window?
Honestly, my breast cancer surgery was easier.
I needed to have this surgery, it wasn’t like getting a boob job or face lift. It wasn’t what they call elective or a vanity surgery. And every other woman I know PERSONALLY who has had this surgery post-breast cancer has had their surgery paid for and post-operative care. However, none of the women I know personally who had hysterectomies had Aetna.
But then there are then the other women I don’t know reaching out to tell me what didn’t get covered either through breast cancer or full hysterectomies. It’s horrific.
How can we NOT be covered for these surgeries? Do we as women set out to have breast cancer and other gynecological issues? I have struggled most of my life with issues from cysts and fibroids and when I was menstruating, having periods at different times that felt endless and were so heavy I practically felt the blood and stuff gushing out of me. (Sorry to be graphic, but that is what it was like). Then I ended up with a hormone driven breast cancer.
Since I got my letter of denial from Aetna I have had bad dreams every single night. All surrounding this letter – hospital bills I can’t pay for and then dreams of them canceling me because I complained about the denial and complained publicly.
I am trying really hard not to worry because I don’t want worry and stress to interfere with my healing. But I have to be honest the past few days have been hard. Even to the point of tears. And I don’t feel particularly attractive after this surgery as it is. I feel like I look awful. And I am just so tired, and tired of hurting. I cry when no one is around so I don’t upset my friends and family.
I have had one person at Aetna be very kind to me, a woman in their social media resolution team. But then there was this Aetna guy off their Facebook page. A friend of mine posted my post to their Facebook page. She is an oncology nurse. We have been friends since we were girls of 12. This Aetna guy has the bedside manner of a toad. All he cares about are “evidence-based” decisions.
Are evidence-based decisions one and the same with the individual realities of individual patients?
What my friend said is this:
” You can have all the evidence-based practices in the world but evidence and a patient’s reality are not one and the same. Just because you found the right evidence to support your profit-based decisions doesn’t make it right when a patient has complications and the original plan gets changed. We’re caring for human beings here, not numbers and “evidence”.”
As a breast cancer survivor we learn that our cancers are as individualistic as we are. Am I to presume that when it comes to other “female” surgeries that we are all the same “down there”? I guess what I had removed was just a bunch of generic Lego parts?
I did not set out here to be the poster child for women’s healthcare issues when it comes to insurance companies. All I want is what is fair: coverage. I pay for it. I pay every month early and on time so when I need my health insurance. Only they don’t seem to want me when I need them so I ask where is so-called healthcare “reform” in this country?
I am hoping Aetna will do the right thing, but after this Aetna guy basically dismissed what has happened to me with a couple of keystrokes, I continue to lose faith in the system.
This struggle between insurance companies and hospital systems hurts patients. It’s not fair, it’s not right, and all I am fighting for is to be covered. I deserve to be covered.
Women shouldn’t have to be forced to fight for the healthcare coverage they deserve and thought they were paying for. To me, healthcare has gone from being a comfort when you need it to being terrifying. How are we to guess what they cover and won’t cover? Is what is happening to me just the portent of healthcare to come? Hey Obama, are you listening? Do you care?
Thank you all again for your kind words of support. Between the damage we sustained from that horrible ice storm the first week of February, my mother having to have serious open heart surgery, and now this dance of health insurance coverage and denial I have had enough.
I am not looking for other than what I thought I was paying for: coverage. And for a giant healthcare conglomerate, paying for the paltry few hours of post-surgical care is such a small thing for them to do.