Summary: TL/DR: Two weeks of routine visits to the clinic for labs, infusions of blood products, dressing changes, and Chemo. July 2nd, a trip to the ER for a brief temperature spike did not result in admittance. Instead we went home to find a box of spoiled food courtesy of his insurance company. Their PR stunt actually exposed their neutropenic member to mold which is a no-no. Of course, I should have dumped the whole box down the trash shut, but I wasn’t thinking fast enough.
Saturday, July 3rd it was back to the ER/ED with temp up to 102.7. This time he was admitted. Cultures found no explanation for the fever, so it is chalked up to the leukemia. Discharge on Tuesday, Chemo day, meant getting the chemo in hospital instead of out patient at the clinic due to insurance rules.
Six units of blood over a couple of weeks due to fatigue and shortness of breath issues, but finally getting manageable. He is doing pretty well.
The full text.
The next couple weeks were spent in more long days at the clinic with labs, dressing changes, consult visits, 3 red blood cell infusions, and one chemo. Could not seem to get his hematocrit up.
On June 24th, hematocrit 26, he was able to get a pint of red blood cells due to excessive fatigue. June 29th, at hematocrit 25, he got another for the same reason and on the 1st a third pint with hematocrit at 26.
Automatic infusions were given if it got below 25, but after needing 3 units at 25 and 26, due to excess fatigue, they raised the threshold to 26. This meant counts of 25 were now cause for automatic red cells. Those three units definitely helped, but not really enough. He got a fourth with hematocrit at 24 on July 4th. Interestingly, though, this time he didn’t feel as strong a need for it, although glad to get it. Vampire time!
On July 1st after the morning red blood cell infusion, we actually got to go home for an hour between procedures, but then we came back for another bone aspiration/biopsy and lumbar punch.
During these 16 days after discharge we were unaware of any temperatures above maybe 99.6 – I think it stayed lower than that but I didn’t write them down as they were acceptable.
But then on the 2nd he felt the dreaded chills again and his temperature hit 100.0 at 13:53 and a half hour later had climbed to 100.9. At 101.0 we were supposed to call the triage nurse and knew that the chances of not being sent to the ER were slim. So I started packing the ditch bag and half an hour later, it was, indeed, 101.0. The call confirmed the expected instruction to go to the ER. On the way out we checked for packages for us near the mail boxes but there were none. A few hours later, it had arrived. Explained below. The shuttle took us to SCCA and we transferred to the UW shuttle, arriving at the ER at 4PM. Temperature was already back down to 99.4 (?) or something considered safe.
The ED (Emergency Department – renamed, I guess, because they are no longer just an Emergency ROOM) was full, of course, but this time I stated that he was there for Neutropenic fever and it was only a few minutes before they got us out of the waiting room – not a good place for immune compromised people to wait. We were taken into one of the triage cubicles until a bed became available in ER2. The usual plethora of tests: blood cultures, X-rays, EKG, urine, and a dozen people of all ranks asking basically the same questions: the triage nurse, the resident doctor, the attending doctor. Hmm. That’s only three. I KNOW there were far more than that, but I don’t know who they were.
Anyway, after all the tests showed nothing, they decided after consulting with his oncologist, that he could go home if he was willing but should return if symptoms returned. So we got a Lyft and were home about 9PM. Five hours of tests. We ordered some supper while there but they were done with him before it arrived. The antibiotic had finished and there was still a bag of ringers lactate available. He didn’t need it since he was able to drink but it was used as a good excuse for postponing departure until after the food arrived and was eaten.
When we got home Friday evening of the 4th of July holiday weekend, there was a box of ‘frozen’ food courtesy of his insurance company. We were loaded down with all our ditch bag stuff and that was more than we could handle without the luggage cart, but luggage carts are available and much appreciated and we used one.
The donated food was supposedly so that an insured customer freshly discharged from the hospital could worry less about food preparation and availability. A nice idea, but it’s not working. That need is greatest immediately after discharge – 16 days later, not so much. The first time they provided a box we found the frozen food unappetizing and far too limited in calories. Most of the frozen meals were only about 350 calories! And they were typical SAD menus with plenty of chemical additives. A small step up from boxed macaroni and cheese.
Being frozen we had no good way to pass it on to someone else who might appreciate it more. The second time they offered a box, they said they could provide shelf stable food instead. So we accepted, thinking we could put anything unwanted in the pantry where guests of the Pete Gross House can get snack makings. We asked for vegetarian stuff but no such luck. Mostly meat meals – soup or stew. Portions suitable for a toddler. Crackers galore, all crumbled into crumbs. A container of orange juice had leaked all over the contents making everything sticky. Again it was some 10 days post discharge before it arrived.
But that was nothing compared to this most recent package, number three. A box of frozen meals. The dry ice was long gone and when I picked up the inner box out of the styrofoam it was soggy and warm. Not good. Having no idea how long it had been at room temperature, we figured it was unsafe – especially after seeing spoiled food that had leaked from one (or more) of the meals and coated the box corners. It was those unpalatable 350 calorie SAD meals which we hadn’t wanted anyway. So I decided to simply empty all the solid stuff into the compost bin and pour any liquid stuff down the drain.
In hindsight, I should have just dumped the whole box unopened into the garbage chute. Instead I took the frozen meals down to the compost bin in the basement, fished out a couple of plastic containers that didn’t belong there, and proceeded to separate the food from the non-compostable containers. What a mess! The sealing plastic was hard to remove without the tools I should have brought but didn’t, and puncturing it with my thumb was not a very good substitute.
Once I had opened the packages, it was clear that the food was LONG gone, spoiled, moldy, beyond unsafe. I now had 7 meals in the compost and 7 plastic trays needing to be cleaned and put in recycle, and hands covered with spoiled food. I used some of the delaminated cardboard paper to wipe them and then another tenant drove in and thankfully provided me with a wet paper towel.
The low fat milk cartons all had a half inch of solids in the bottom under transparent liquid. The ‘orange juice’ cartons had what seemed like tissue paper in a brownish liquid – I’m guessing it was somehow related to the package liner.
I belatedly thought to take pictures of what I had not yet disposed of, finished the disposal down the garbage disposal and then disinfected the kitchen. Believe it or not, my nose was unaware of the spoilage, it was only my eyes that informed me – and Dave’s nose. He said it stank. It then occurred to me that Dave is supposed to avoid mold among other risks due to the neutropenia! And here I had introduced moldy food to the apartment and he was able to smell it.
And just think: if we had not come home from the ER but had been admitted, that box would have sat there in the lobby for the holiday weekend since the office was closed. Or until security or another tenant became aware of the stench and dealt with it.
How’s that for a rant! I’m pretty disgusted by what I consider a PR stunt that, for all I know, may have put Dave at increased risk of additional health issues. Holiday over, they will get a piece of my mind!
Finally got to bed around 11 after the clean up and slept in Saturday morning. At 11:11 Dave was feeling a bit chilled so we took his temperature and it was 99.8. A half hour later, at 11:43, it was 100.9. Climbing fast. Already packing. Nine minutes later, at 11:52, it had reached 101.2. Called triage. Quite a debate about what to do. The oncology/hematology floor that we have always gone to was all full until after 6PM, so there was no way to go directly to admissions. But antibiotics needed asap (after tests) so it was either SCCA or ER. SCCA closes at 6 on Saturdays, and hospital beds were not expected before then. They could get the tests going and the antibiotic, but would probably insist on an ambulance ride to the hospital ER when they (SCCA) closed. The ER was full but not with patients who would have priority over him, so he could probably be seen fairly quickly. We decided on going directly to the ER since we would probably end up there anyway and it would probably be best to arrive before they got a lot busier. At 12:18, just before heading out, his temperature was 102.0. At the ER we were seen promptly despite the receptionist insisting that they were FULL and we would have to wait – telling us this as we were being escorted to a room with a bed. We were willing to wait there, away from the waiting room of unknown dangers, but it was nonstop action for the next half hour or more – no waiting. They were picking up from where we left off, repeating pretty much every test, but with familiarity with his case. His temperature on arrival was 102.7.
Admitted upstairs at 6:30. He had had a COVID test in the ER the day before and it was decided that he did not need a repeat of that particular test. But after 5 hours in the ER waiting for a room and finally making it upstairs, they then informed us that he did need a fresh test and that until the results came back the next morning I would need to go home! Arghh! They could have done that during those 5 hours and saved time, but no. (The last time the COVID test was done at about 10PM and results were back by 2AM but this time it was a holiday weekend). The nurses were very apologetic, agreed that it seemed overkill, but rules were rules. It was beyond us how HIS test would affect the risk of ME being there.
Dave was not a happy camper and was ready to file a formal complaint but, naturally, there was no way to do so before Tuesday. I had gone downstairs and found several couches near the elevator on the third floor and debated camping out there for the night, but decided I could get home by mass transit for a buck with some exercise thrown in and get a comfortable night’s sleep – if I could sleep at all. So I headed for the bus stop and waited for the crosswalk signal as my bus proceeded through the light. Darn! Ah, well, there would be another in 10 minutes, no big deal. I was halfway across the street when my phone rang and Dave reported that special dispensation had been received and I could come back! The nurses apparently had asked some higher up and gotten permission.
We volunteered for me to take the COVID test as well as Dave, but they brushed that off as being totally unnecessary. I have never been tested for it. He gets tested every three days while here, and on every admittance. Sorry, I can’t fathom the logic. As I said, how on earth does HIS test affect the risk of MY presence?
That night around 8 he got the chills again – the shivers and shakes and that horrible feeling of ‘here we go again.’ Back to the 8 hour cycle. But with the help of deep breathing and distraction techniques, he kept it from getting out of hand. It was worse than the last episode before the previous discharge, which was discouraging, but he kept at it and it remained manageable even though anything but pleasant.
By 9:30 the worst was over and the temperature was spiking. They gave him Tylenol to bring it back down. 10 PM was another bag of antibiotic. At three AM he was feeling pretty good except for being very damp from the sweating. Nervous about getting cold again. Changing into dry clothing might start the chills again. Decided a hot shower would maybe stave off the next chills and would at least get him clean and into dry clothes and sheets. Discovered the pick dressing was falling off but they told us it was okay to shower and brought us the needed towels, sheets, gowns, etc..
Put on his newly purchased shower shoes and took a shower. For the first time in ages he didn’t feel a need to hang onto the grab bar! He felt safe. Finished the shower and made it back to bed. Then I found the disc that surrounds the PICC line at the insertion point had somehow gotten onto the floor!! So the dressing change couldn’t be postponed anymore. The PICC line itself has markings on it every centimeter to show whether the line was pulling out or somehow going in. Our paperwork showed that it had been 3 centimeters of exposed line when installed. It had been 5 since the first or second dressing change weeks ago but no notation had been made so our protestation that it had come out an additional 2 or 3 millimeters, not 2 centimeters, fell on understandably deaf ears. It was simply dangerous to take the word of lay people on critical stuff. So they insisted on yet another set of x-rays to check the location of the other end at the heart. Four x-rays had already been taken the previous 2 days showing where the heart end of the line was – but they had no documentation that the exiting line was at 5 cm during those x-rays rather than the 3cm on the paperwork. For all they could prove, the line might have moved 2 cm out that day and hence might have become mis-located. We made certain that the documents got updated to show that 5 cm was an acceptable showing.
So by the time the dressing was changed and the x-ray taken it was past time for the 4AM chills, not that we wanted them! Around six o’clock they finally came but they were mild and brief. Hematocrit Sunday morning was 24 so another pint of blood was ‘ordered’ (unit #4 mentioned above), but neglected to be entered and the order had to be tracked down and the blood finally arrived around 4PM. Again, during transfusion the chills came or at least a sense of being cold and expecting the chills. It passed and then came the usual temperature spike but it didn’t quite qualify as one. It got up to 100.9 and I said to check again in half an hour instead of an hour since it climbs quickly. If it went another tenth of a degree it would be time for Tylenol. Instead it went back down. No need to report a possible blood reaction. No need for Tylenol.
Despite the new blood, Dave did not feel like doing any laps, but he has been using the computer while I’ve been writing this. With neutropenic fevers, the norm is to wait 48 hours for cultures and further signs of trouble and if none, discharge. That would mean Monday evening which means Tuesday morning – which is when he is due for his next chemo. Rather than do that as an outpatient the same day as discharge, he will probably get the chemo here and then be discharged.
So Monday morning his hematocrit had dropped to 23 despite Sunday’s unit of blood!! So he got yet another unit (#5). This time we got a check shortly after infusion – curious as to what the initial boost would be. It went up to 27. Most units provide a boost of 3 or 4. This one did perk him up and he walked several laps and later took a shower. The doctor said that they could not do the paperwork to divert the chemo from the clinic yet because it’s a holiday, but they would do it first thing Tuesday morning. Getting discharged Tuesday and then going to the clinic for the chemo was not an option due to insurance rules!! If we did that, the insurance would not cover the chemo. Wonder what the reason for that is?
Tuesday he got unit #6 of red blood cells!! (Hematocrit had dropped back down to 25 (from 27) as of midnight Monday, low enough for another unit.) He had donated blood often over the years, pretty much every chance he got, as we always felt that it was such a life giving gift that costs nothing. Now he is the recipient, instead of the donor, and we have first hand experience with the difference that it makes. He walked an entire mile after that unit and only quit because he was nervous of overdoing it, since he had been sedentary for too many weeks. He is feeling much better although nowhere back to normal.
In response to Dave’s complaint, the nurse manager for the floor came in and talked about the COVID rule which still does not make sense. But she said it was a hospital wide rule and wasn’t going to change. If we run into this again, we can ask for an immediate covid test down in the ER, and we can ask again for special permission if needed upstairs. We asked if she knew why they still use the torture test in the ER – the one where they push a long swab to the back of the sinuses. She was incredulous, said that test had been discontinued a month ago and should not be in use. She would get to the bottom of it.
She reported shortly afterwards that the ER manager was also shocked and extremely embarrassed and agreed that it should not have happened and she would see to it that it didn’t happen again, apologies galore.
The chemo did not get sorted until mid afternoon and our nurse was aware that we wanted to catch the shuttle to SCCA – the last of which departs at 5:40. She pulled out all stops to ensure that there were no further delays even though we could catch a Lyft if we missed the shuttle. But, the shuttle is free and Lyft is $21.00 or more.
At 5:35 I headed down with all the luggage to let the shuttle driver know (at 5:39) that we would love a ride if he could wait – that Dave was a few minutes behind me. The chemo was still running when I left. About 5:36 or 7 the chemo finished, followed by a minute of line flushing, a reinforcement of the dressing, and putting on his shirt. At 5:45 (5 minutes past the bus’s scheduled departure time) the driver decided that it would be okay to pull up closer to the entrance and timed it perfectly – Dave reached us about 5 seconds after we pulled up, with the nurse escorting him. We arrived at SCCA before the 6 o’clock shuttle to Pete Gross House departed, but it was already full so our driver from UW had us get back on board and brought us all the way home. Back in the apartment at 6:10 with yet another PR donation from the insurance company – again with an empty orange juice container that had spilled sticky juice over everything else.