Yet Another Journal

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» Thursday, March 15, 2018

The Medical Black Hole

I have not fallen off the ends of the earth. Although in this case, we might as well be there.

Thursday night James had pain in his shoulders, like the kind he had when he had pneumonia. We decided that he'd take a shower, get some sleep, see how he felt in the morning. In the morning he was worse. The advice nurse told us not to go to the nearest emergency room, but to the Northside emergency room. [eyeroll] Guess what time it was. Yes, rush hour. Poke, poke, poke, all the way there, with James breathing harshly beside me.

They took him right back, and at first it looked like he indeed had pneumonia. We spent a few hours in ER, then were transferred up to a holding room for investigation and possible admittance. His EKGs were coming out fine, but it was extremely painful when he breathed. They served him lunch and he couldn't even eat it. Then they took a sonogram. Then an echocardiogram. Finally, very late in the afternoon, he was downstairs having an ultrasound when the nurse came to me and said, "I'm going to take you downstairs to the cath lab. They're taking your husband there immediately; he has fluid buildup around his heart."

So I eventually spent nearly two hours walking up and down the eventually empty corridor of the cath lab (because everyone there had gone home, except for the group, including James' cardiologist, who were working on him) crying and saying my prayers over and over until they let me into ICU. They'd taken a mess of fluid from around his heart and, to add insult to injury, his prostate had enlarged enough to block his urethra, so his bladder was backwashing into his kidneys. They got three liters of urine out of him eventually! Plus he had a drain in his chest, which the cardiologist used to pull even more fluid out.

So we spent three glorious [sarcasm alert] days in ICU, where they threw me out three times a day even though I am listed as a "care partner," not a visitor. (I get the point of limiting visitors around ICU. They had patients in there where six to eight visitors were arriving at one time! But I was helping out, keeping my mouth shut and myself out of the way, and doing what I was told.) Inevitably, they fixed him up with a temporary catheter and he had two dialysis treatments, which they hoped would help the kidneys and the heart. Alas, a bit of fluid did re-accumulate around the heart, so they made the decision that he is going to have a permanent catheter inserted and will have to have full-time dialysis, at least for now. 😔 We'd thought we'd kept that at bay, but that drug he shouldn't have taken in January and the backwash had done him in.

Sunday afternoon we got transferred to a regular floor. There were a few more plans. A coordinator named Tiffany started working for us to get James in a Kaiser-approved dialysis clinic. (Sadly, he was unable to get in either of the ones on the East-West Connector or at the Galleria, which would have been closest. He will have to go up near the Big Chicken, and on the "last shift," at 4 p.m. We will have to have "dinner" on those days and then send him off, because he can't eat a full meal so late at night when he will finally get home, between eight-thirty and nine-thirty.) He would have a dialysis treatment on Monday, and then on Wednesday the permanent cath would be installed and he would have dialysis, and Thursday he would go home. Friday (tomorrow) he would start at the dialysis clinic.

I can tell you now that we are not home today.

I called him Wednesday morning (the main floor room is a tiny room, and there's nowhere to sleep but a very hard recliner, which, believe it or not, was worse than the "padded boards" downstairs in ICU that I'd slept on Friday in one room and then Saturday in another—they needed the original room because it was a negative pressure room—so I have been going home at night since we got into the regular room to take care of the fids and sleep and have breakfast), and he was still waiting (and starving) for them to take him downstairs for the permcath. By the time I arrived on Wednesday they had fed him. The cath was off because the vascular surgeon refused to do it because he was on Brilinta. Instead he will have to cool his damn heels here for five days with a Heparin drip until the Brilinta gets out of his system. The vascular surgeon we talked to in ICU on Saturday knew he was on Brilinta and just as much told us he wouldn't do a procedure while he was on it. So why didn't they start him on the Heparin drip on Saturday? They told us they were hoping they wouldn't have to put him on dialysis permanently, so they didn't do it, but I think they'd pretty much decided by Saturday it was going to have to go on.

Plus apparently they told him he can't go more than three days without dialysis, so that means we couldn't skip a Friday for Atomicon or WHOlanta or whatever, BUT he can go five fucking days here without dialysis because some moron authorized the removal of the temp cath before the permanent one was put in, so he can't have any more dialysis until Monday.

After 21 years as a purchasing agent, the one damn thing I had firmly banged into my head is that you don't end one essential ongoing project--like storage for vaccines or electronic communications--until the new one is ready to be put in place. So not only is he stuck here, but he's stuck here not able to do anything toward getting well except be a good little sheep with an infusion bag. He is on infused Lasix to prevent more fluid buildup, but between now and Monday it's possible that fluid could start building up again around his heart, and then they will have to do another temp cath! He will have an echocardiogram again tomorrow to make sure that is not happening.

(The nephrologist did tell us the "no skips" are not set in stone. We could tell the dialysis clinic he would be out of town on one of the days, and they could schedule him for a day before, or we could go into a long weekend, for example, being very careful about his fluid intake, taking extra furosimide [Lasix], and eat very carefully, keeping an eye out for swelling, shoulder pain, breathing difficulties, etc.)

So we are at present stuck watching Mysteries at the Museum and being bored, which is better than Friday when James was utterly miserable, in pain with every breath he took, and then later flat on his back in ICU with a drain in his chest and a Foley catheter in...well, in the place where Foley catheters go. (The latter is still there. He'll have to prove he can go without it before we leave. I just wonder what we can do about the prostate.) He had to have it fixed at 3 a.m. on Saturday morning because it was giving him terrible pain; I was woken up by the urologist "reseating it" and James groaning. Now that he is better and growing restless, I feel better for him but am as frustrated as him about the holdup for the Brilinta detox. At least if they hadn't removed the cath he could have been doing the dialysis, which would be progress.

But I was completely strung out Friday night. I went in the ICU waiting room needing a good cry, was comforted out of it, but couldn't bear staying in there because it was so loud. At least a dozen people talking and laughing made such a racket I went out into a hall and found a corner to sit in. (I tried going back in there later, only to find myself seated across from a woman talking to a doctor about a patient in renal failure. I fled.)

Everyone here is as nice as last time, but the food downstairs still stinks. I had some turkey Sunday night that must have had the complete daily allowance for sodium in it. Yuck! The salad bar has little variety and lies untended half the time. Most of the entrees are peppered, and you get tiny portions for $4-$5, and then have to pay another $2 for a spoonful of rice. James is getting bigger portions from the patients' kitchen than you get for your hard-earned cash. Milk is a dollar for a pint! Sunday afternoon when they threw me out I went up to Perimeter Mall and bought myself something from Tin Drum, which I had both for lunch and for supper. At least it tasted good and filled me up. On Monday I bought myself some bread and mortadella for sandwiches and to dip in soup, and then Wednesday I bought more bread and made sandwiches using the chicken salad I bought for Hair Day last Saturday, since I don't want to waste all of it. (It's...bland. Eh.) Those will last through Sunday. Tonight I'm going to have the last of the mortadella as a side with a salad from downstairs and the usual stale dinner roll. (I hope I am lucky and they have olives. They don't some nights.) I'm spending $6/day on parking and don't have money to spend on rotten food.