And two weeks later, still don't have anything and debated today whether to go to the ER or try to hold out longer because so light-headed and light dizziness + headaches and heavy fatigue. Anemia stuff is kind of all over the place on when you need to go to the hospital, mostly when shortness of breath and irregular heartbeats. I'm generally ok on breathing still and using a finger pulse thing my pulse jumps around between 80-91 but that seems normal range especially considering the heavy stress and anxiety I've got going.
Let's see, here are all the medical fuckups in the last year for me:
Nov 21 - Started noticing Hemglobin starting to fall (men should be 13.2-16.6 or higher), started going under 13 and into the 12 range, doc says "nothing concerning"
Dec 21 -> May 22 (6 months) -> doc continues to say nothing concerning, but one of my other docs is concerned and orders and iron test, which shows my ferritin levels of iron are at like 11 and anything under 10 is considered pretty serious you need iron infused. Still at these levels in May 2022 I'm definitely considered to have mild Iron Deficiency Anemia and I'm at the point where an insurance would allow iron infusions and doctors would recommend them. Yet no doctor tells me this.
May 22/June 22/July 22 - Doc is busy and I'm in the middle of surgery and recovery and this gets sidetracked.
August 22 - Doc sees iron levels and goes - yeah, you should get iron infused, but don't worry if it takes some time getting through your insurance and setup, it's not dangerous.
August 19th-Sept 12th - Takes 3 fucking weeks to get the doctor note to my infusion doctor and them to submit the prescription order.
Sept 12th - Sept 27th - Take 2 fucking weeks for my infusion doctor's corporate office to approve the infusion and send it to my insurance
Sept 29th - Insurance denies it stating my 4.1 week old labs are too old and labs must be within the last 4 weeks showing anemia. I say ok, fuck this I will pay cash, I need these iron infusions done. But the infusion doctor's nurse says if I just go and get new labs it should go through the insurance on the 2nd try so I should do that first. I rush out and do new labs which now show ferritin lvl is down to 3.
October 5th - the infusion doctor auth person finally re-sends it with new labs.
October 7th - Insurance denies it a second time saying you have to state that you've tried oral iron supplements for 4 weeks and it hasn't work or you don't tolerate it. (I've tried oral iron and it doesn't work).
October 10th - Infusion doctor says because it's been denied twice needs to go through longer appeals process so faster to do a peer to peer call and provide the additional information about the 4 weeks of oral iron. Calls the peer 2 peer number and leaves detailed message. P2P says not to leave multiple messages.
October 12th - Insurance peer 2 peer hasn't called back, doctor leaves another message.
October 13th - Insurance peer 2 peer coordinate calls infusion doctor coordinator as says "we don't have the latest labs and doctors notes. Please fax them and I'll send them to the insurance clinical reviewer and they will call to set up a peer 2 peer call with the infusion doctor.
Meanwhile I'm getting weaker and weaker in fatigue and symptoms every week/day.
Finally today Oct 13th - I call the nurse and say I'm falling apart and on the fence of going to ER which will fuck me over of the dozens of thousands of dollars I'm sure, so it'll be cheaper to just pay cash and do it at your office. While the doc is trying to get the insurance to talk to them can we at least do a backup cash payment version so I can get on schedule instead of having to go through hoops in another week if the insurance says no.
And they get the cash discount payment amount and it's...not that much. Like I was expecting thousands of dollars, but it's like $1k and I'm like dude if I knew it was going to cost 1k I would have done this weeks ago. So we go ahead and set it up for mid next week.
So either the peer 2 peer happens and it gets insurance approved and covered and I do it next week, or I just pay $1k and do it anyhow and I can try to fight the insurance after for reimbursement because it really should be covered.
So now I just have to try to survive about a week without dying or doing so bad I need to go to the ER and get iron infused. Fingers crossed I can make it.
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Separately on top of all this, I get my main crohn's diseases immune-suppressant drug every 6 weeks for the last 13 years. My next infusion is scheduled for Tue Oct 11th and they call me last week on my birthday on Thursday Oct 6th and go "uhhh, we wanna save $$$ so we're changing everyone on this med to a biosimilar" and I'm like "yeah, let me check with my doctor to see if this is safe/practical" and after spending my entire birthday on the phone with docs and researching this stuff I get back to them on Friday and say "ok, fine, let's do this" and they go "ok, you should be fine for your Tuesday infusion"
Monday at like 4pm - They call and say "were cancelling your infusion tomorrow because we didn't have time to get authorization from your insurance for this new medication (even though I have authorization for the original and this is a biosimilar of it), we're asap on this and will have this in a day or two and you can do your infusion, check back on Wednesday
Wednesday afternoon - authorization person at my infusion doctor "uhh, we are on top of this and should have it by tomorrow, check then"
Thursday afternoon (today) - authorization person at my infusion doc "oh, because this new medication which WE FORCED YOU TO CHANGE TO 4 DAYS BEFORE YOUR NEXT INFUSION is a new mediation it has to go through a 1-2 week internal review and approval at our corporate. It just cleared that today, we'll get it to your insurance this afternoon and maybe we'll have approval tomorrow afternoon"
So...if they actually got it over this afternoon and if my insurance actually approves it, may be able to order it monday and do this infusion next tuesday which is 1 week late. All because they changed the medication on their own (and fwiw looking up biosimilars it seems like there's a 1/11 chance of the meds to stop working when changing to a biosimilar -_-, but my doc said every hospital/infusion place has switched to a biosimilar so there's no where I can even stay on my existing infusion med anymore so gotta go to a biosimilar which he said he's very comfortable with since most of the time people have no issues switching).
Anyhow, it's likely that like 50% of my symptoms are coming from the stress and anxiety of dealing with this every day which is exasperating my iron defiency anemia. I've barely been working and life has been total shit for a while. My main doc has fucked up by not even investigating my iron levels after 6 months of dropping red blood cells and then taking 3 weeks to even get an iron infusion order to my infusion doctor, my infusion doctor has fucked up by not submitting the right paperwork twice and lagging every step of the way and having a 2 week internal review delay before even submitting it to my insurance and my insurance has fucked up by not getting back on the peer 2 peer to resolve the issue. Just the american health system at work.
Out of all my doctors, the only doctor I have that is actually responsive and awesome at getting things done, where I call and actually get a real person who can do things and I can squeeze in and see my doc on pretty short notice, is my one doctor who is out of networks and doesn't take insurance and costs me like $300 out of pocket every time I see him for a 10 min follow up. Which sucks, but it's also ironic in that when you're not jumping through all the insurance hoops and just paying real money, you actually get good service and people treat you well and things move quick.
Reminds me of one time a few years ago I had a throat bleeding issue and none of the main hospital doctors could figure it out and then the above guy recommended some hot shot throat guy that works with voice actors and it was $800 cash for an appointment, but I was doing really bad and could barely talk, and I saw him for like 30 mins and he figured it out and the ironic thing being there was nothing to actually be done, a polyp on my vocal chord had naturally torn off on its own and the wound had become infected, but it had cleared on its own and it was just at the final stages of scabbing up and healing on its own. But was nice to actually find out what happened.
