But this week. This week has been more of an on-going adventure. Tuesday, a family member wandered over to the local Menard's and tripped over some poorly-placed lumber, cracking bones in her wrist and knee, spraining an ankle and breaking a toe. Half my nurses -- those who are licensed LPNs attending the local college for their RNs -- are bogged down in what appears to be a departmental failure to provide the needed education. A suddenly-changed school policy requiring they do their online computer homework at the college instead of at their convenience means that one of my nurses has had to cancel a night shift, which means my gimpy relative with the weak bones has two nights per week to try and help me in ways she can't possibly, at the moment.
And the snow plows have given up for now. Visibility is too low. Tonight's nurse made it here over slippery roads. Hopefully tomorrow will see the roads clear. In the meantime, my back-up batteries are ready in case the power goes out. I can last for 16 hours on them, if I need to.
And yet this is not the most distressing news of the week. My medical supply company called today to say that Medicare will not allow them to give me more than 90 trach suction kits per month -- that's three per day, when I always need an average of maybe five, and some days easily nine or ten. Trach suction kits consist of sterile gloves, a sterile container for the sterile water used to lubricate, and a sterile plastic catheter that slips down my windpipe to suction up the lung gunk that bypassing the upper respiratory system triggers my body to make. The catheter is connected to a little vacuum machine that provides the suction. This is the key service my paid help must provide in a sterile format in order to keep me, or anyone with a trach, healthy. Without suction I will literally drown.
And I cannot pay out of pocket for what Medicare will not cover because that would mean I do not need the state to help pay for my nursing help. Have I mentioned that while most all of my nurses have needed to be trained to do this suction (because it is not a basic skill all nurses learn to qualify as nurses), the state nevertheless requires that nurses be provided if it pays for my help? I'm happy with the women who work here -- though we need twice as many of them -- but their required qualifications do not mean they are trained to do what I require. And of course, they cost more to employ than a non-nurse who would have to be trained to suction in the same way. And with the shortage of available nurses, I do not have the staff that I need.
The Medicare rules about three suction kits per day are not new and do not affect only me, of course. As I understand it, I can get some sort of medical waiver through my doctor certifying I need to not drown and must have suction available when I need it instead of just three times per day, rain or shine. Apparently that waiver will be required attached to every sale of every kit beyond the allowed amount for as long as I need them, which will be until I stop breathing, basically. Somewhere there are people paid to look at these waivers all day, in perpetuity. From a listing of these rules:
If Medicare determines there is medical necessity, the standard allowable for the following items are listed below. Medicare may sometimes approve larger quantities, but that decision is made on a month-to-month basis by the individuals reviewing the claims. They may approve larger quantities one month, but disapprove them a different month. For the most consistent reimbursement by Medicare, you may want to consider placing one order per month, staying within the limits listed below.My orders to the medical supply company are already monthly. I have no idea how complicated getting this waiver and getting permission for the medical supply company to give me extra kits will be (is there a special form? can I get kits on credit in the meantime? will I need to get a doc to sign the form every single month for the remainder of my life?), so it's a lucky thing I have a few extra kits just now. As I said, I cannot buy out-of-pocket what I need to breathe because my state-paid nursing care would be cancelled altogether.
As far as I can tell, this is how it works. You qualify for Medicare, and muddle along until one of the obscure rules bites you in the ass and threatens your life. Then you see what you can do to survive. Or the system fails you.
It's not a matter of wise or difficult funding choices. No one is out there allowing sterile catheters to be shoved down their windpipes willy-nilly, recklessly suctioning when they don't really need cleaner airways. The kits I currently use cost about $5 each, which, let me assure you, is peanuts compared to many other innocuous pieces of plastic that I also require. If I didn't have enough kits, or had to use non-sterile equipment that caused an infection and forced me to go to the hospital, my Medicare would kick in to pay for much more than a few extra measly kits per day.
And I finally saw my pulmonologist yesterday, for the dizziness of seven weeks ago, which has abated almost completely now. I think it was caused by weaning off Dr. Perky's Effexor. I confirmed that I more or less know what I'm doing with the ventilator settings, and a blood gas proved all is well. (A competent RT had absolutely no trouble making me bleed.)
I like this doctor, and we discussed a drug I use in a nebulizer that the pharmacy has insurance reimbursement problems with. The pharmacy will only give me the big bottles of the liquid medication (30 ml as opposed to 4ml bottles), which then expire and must be thrown away before I have used half of each bottle. Half my prescription goes into the garbage because of the size of the vials I'm sold. Then my monthly prescription runs short and the insurance company freaks out because I need more too soon. I will try to wean off that drug, if I can. The doc says that's best anyway, and may be possible. Or switch to mail order drug supply and see if that doesn't work. (Incidentally, this drug -- Mucomyst -- keeps the lung gunk from getting too thick, allowing me to need less suctioning.)
None of this is about insurance or Medicare providing what I medically need or even necessarily saving them money. It's about policies that don't fit individual needs and apparently are not to be budged.
Do not even get me started on the single-use sterile saline bullets sometimes used to dilute thick lung secretions so that suctioning is easier and causes less trauma. Medicare simply states they are not necessary and will not be covered at all. They were used frequently at the first-rate rehab center that taught me what I need to know to keep myself healthy. I have some in a box here, and use one or less per day. Now I learn they are completely unnecessary and the comfort I have noticed from their use is a figment of my imagination.
Gah.
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