I dream sometimes of a world where health care and health insurance work differently. One of those dream state differences has to do with billing. In that world, I would get one envelope (or better, one electronic statement) each month enumerating all health related charges, what they were for, how much was paid by insurance and what I owed. I would then make one payment that would be dispersed to all the parties that are supposed to get money from me.
Alas, that is not the current system. Instead, statements (and all those “this is not a bill” explanations of benefits) come in dribs and drabs.
And then there are days like today. I opened my mailbox to find a tidy stack of envelopes. There were so many that I took a photo:
Some day when I get bored I’ll open them.
At least the unexpected deluge of Priority Health envelopes gives me an excuse to provide an update on Penny.
We've been home from the most recent hospital stay for 11 days now. Part of the new treatment plan was to avoid eating and to get three 250 ml cartons of nutrition each day through the J tube. We haven’t managed more than 500 ml on any day. And on a couple days we only managed 250 ml or a bit less. Not surprisingly, along the way we recorded a new record low weight (but it has come up a few pounds again since then).
About an hour or so into feeding, Penny starts to feel pretty lousy. The nausea and painful cramping gradually get worse until we eventually shut down the tube feed. Then it takes some time for the symptoms to reverse. So our strategy has been to break the feeding up into 4 or 5 little sessions, since the recovery seems to be quicker if we don’t overdo it in any one session.
The only suggestion we have gotten from the medical folks is to reduce the rate of the feed. In our experience that just makes the process take longer, but doesn’t result in any more nutrition.
Taking a break from eating did help the skin around the tube site heal, but it did not prevent the tube site from leaking. So a few days ago Penny decide to add back in some eating and drinking. She had been getting thirsty and hungry and hadn’t been getting the targeted amount of calories, so it seemed worth a try. We are still evaluating the results.
Dealing with the tube site has also been an ongoing problem for the last several weeks. Without food, the leaking at the tube site was less irritating to the skin, but it didn’t stop the leaking. It is very unpredictable how much leaking there will be and when. We might go most of a day with no issues and then need to change the dressing several times over a few hours. A few times we have spent an hour just letting it drain and cleaning up as it goes.
Because of the recent clotting, Penny is back on blood thinner. Today we had pretty clear evidence that the internal bleeding has returned. We may be stuck choosing between clotting and bleeding.
Our care manager called today. And after getting a summary of all this (plus a description of Monday when Penny struggled with low blood pressure and fatigue and mostly slept for about 36 hours), she suggested that we try to arrange a meeting with representatives from all the teams (primary care, oncology, palliative care, and interventional radiology) to consider how to balance competing concerns and determine the best course of action. That seems like a good idea, since currently we are doing the shuttle diplomacy between the various offices. I expect we’ll hear in the next day or two if and when this will happen.
In the meantime, we are dealing with each symptom as it arises, and making some tentative plans for a couple weekend excursions.
Comments
Patricia Boer Fischer : Good Mornin 2Ya's both..Still Prayin 4Y'all & 4God's Blessing's on Ya's!! Thank-U 4Sharin Sharin Penny & Ur's Journey thus far..God has a plan 4Sure 💕🫶⚘️😘🙏.. 4HE is GOD Almighty 🙌 Amen!! Ps. I Remember the bills & statements pilling up 2, it was crazy 🤪!! Hugg's, Love & Prayers 💕🫶⚘️😘🙏
Laura DeHaan: How frustrating for you with those bills! Praying for Penny to feel stronger and tolerate more food. Prayers for all of you!
Paul Meeter : We got a dozen all in one day too, so we know what you're talking about. They were all 'this is not a bill'.
Mary Hulst: Praying that everyone can agree on a good and helpful way forward.
George Monsma, Jr.: Oh Penny and Randy, sorry for all the difficulties you must deal with. I'm praying that the meeting of the care team occurs soon, and they have a good solution to the problems. And that the problems diminish, and that food and drink by mouth helps.
Scott Vander Linde: About the bills--spent my career teaching the details of "our health system," and advocating for changes that put the $s into care, rather than admin and billing. Sorry you (and any of us having procedures lately) need to deal with the time and stress required for all of this. So glad you do have such an available care team--and that the care manager to coordinate! Praying for a timely and good meeting with your team. You guys are so brave walking through this all, day by day.
Chriss Pruim: Thanks for updating Randy. We are bringing you to the Lord every day. Praying for less pain nausea and discomfort, and wisdom for the doctors and for you.
Tony Holmes Curran: I’m praying for you both again this morning. The ability you both display of taking things as they come amazes me. I’m grateful for your witness.
Lynne deBenedette: Re the “Priority” envelopes I have no words—at least not any that are shareable here— other than to note the irony of the insurance company’s name. Many thanks as always for taking the time to write to us with such grace and detail. Sending prayers, much love, and a big hug to all.
Herm De Vries: Thank you for sharing all this, including the "you-couldn't-make-this-up" drop of dozens of insurance statements. Praying for you all to experience daily strength for the new challenges you're facing.
Alisa Tigchelaar: Praying for you both, Penny and Randy: that an all-teams meeting with different care providers and weekend excursions will happen and provide you with knowledge and respite. Praying for you, Penny, as you resume eating and drinking, and that this will alleviate your thirst and hunger and not result in further/worsened leaking. Also for the right balance in the clotting/thinner situation to be found. Much love. 💗
Susan Norman: At the very least, it seems like a "frequent flyer" status would rate a case manager to handle all this stuff! Thanks for the sarcastic humor!