Saturday night I slept GREAT. Even with the nurses coming in to check vitals and even with getting up to go to the bathroom, I was just O-U-T.
Fairly early Sunday morning, my local nephrologist, Dr. F, came in. Luckily for me, she was doing nephrology rounds that day. She did a basic assessment, and we discussed my case. She had some differences of opinion on a couple things from Dr. A.
The first was the Bactrim that I was on. (This was the antibiotic I’ve been taking since June.) When I had my last visit with Dr. F on September 11, she told me at that time she didn’t think I should be taking that drug unless I was actively receiving chemo. She said it can raise creatinine levels and affect the kidneys. I passed this along to Dr. A but she said she wanted to wait a bit because she had just taken me off the lisinopril and wanted to see if she could determine if one was responsible for the rise in creatinine; if she took me off both at the same time, we wouldn’t know which might be the culprit. That seemed logical to me. But the previous doctor I saw the night before in the ER (Doctor #2) also stated he didn’t think I should be on the Bactrim.
The second thing she didn’t agree with was repeating the kidney biopsy. She didn’t see the value in it, particularly versus the risk. She said, “If she feels your conditioning is worsening, I think she should just move to the next step in her treatment plan not put you through the biopsy again.”
So what am I to do? These are two highly educated providers in this specific field. It’s not like it’s a nephrologist vs a chiropractor (no offense to chiropractors. Well, maybe a little offense, but that’s irrelevant). I could easily see the value in both opinions. And what do I know? I’m just the patient. But I was off the Bactrim; that was a done deal.
We also talked about my hemoglobin. The last set of labs the night before indicated it was 8.3. That’s pretty low. She did say that it’s possible it was “artificially” low because of all the fluids they were giving me—it was diluted. She asked what it was the last time at the hematology clinic: 9.3. She said if I were dehydrated at that time, it could have “artificially” high because of the opposite: it was more concentrated in my blood. She said it was probably somewhere in the middle. I should know more on Friday when I go back to the hematology clinic. But if it IS in the 8s, it does explain why I’m so freakin’ tired all the damn time. Maybe they’ll bump up my dose of Aranesp. That seemed to help last time.
Later, Dr. B, an internist, came in. This guy was a character. He had a slight European accent, and was just a funny guy. He told me that because he’s “just an internist,” he definitely takes a back seat to the nephrologist. “My opinion means nothing.” But I think he’s basically “required” to check in on all the inpatients. He did say that seeing the Bacrim in my meds was a red flag to him. So now that’s THREE doctors who didn’t think I should be on the Bactrim.
I told him that Dr. F was on rounds and had come in earlier. “I thought your doctor was in Pennsylvania.” “I have a local nephrologist too but she’s not familiar with this disease.” He covered his masked mouth and said, “OH SHIT. I didn’t know that, and I called the other nephrologist [whom I saw in the ER the night before].” I said, “It’s no big deal, he knows I’m a patient of Dr. F. He’ll just hand the case over to her.” “Well I don’t want to step on anyone’s toes.” I said I didn’t think that would be an issue, and if it were, “They just need to get over it.” [I really hate that crap; it doesn’t serve the patient in any way.]
He did tell me that my creatinine had come down from 3.9 at admission to 3.1. Still too high but at least heading in the correct direction. I really hoped it continued with this trend so I could avoid the biopsy—and the prednisone. He gave me his card and said he’d be back the next day.
Nothing terribly interesting happened the rest of the day. I continued to get fluids, 1000 ml about every 7 hours. I did the math on this: I received 9.5 liters of fluid over the time I was there, plus all the water I was drinking. I feel like that’s a lot. I was happy when the nurses finally just let me unplug the IV thing and just take it to the restroom with me instead of having to call them every time I needed to pee. All that water’s gotta come out eventually.
So… the relationship between creatinine is a little confusing. And this is just my thought process on this. I wasn’t told this by either doctor, but to me it just makes sense. If the kidney function goes down, which will be reflected in a lower GFR, the amount of creatinine in the blood will be higher. But… if something else causes the creatinine level in the blood to be high, that will artificially decrease the GFR since the creatinine level is the primary factor in determining the GFR. I was hoping that’s what was going on in my case. Dr. F did say that if the GFR is fluctuating quite a bit, it’s not a reliable indicator of the kidney function; the creatinine level is a better predictor.
I slept a lot of the day. My roommie, whom I didn’t talk to, was an older woman who seemed to be pretty ill. I couldn’t help but hear her doctor talking to her, and it sounded like her primary issue was her liver. She was unable to get out of her bed. At one point I heard her talking on the phone in a different language, and I said to myself, “Oh she’s from [ ],” a nearby pueblo. I recognized the language. Later when the doctor spoke with her, this was confirmed when he asked her where she lived. He told her that she needed to go to a rehab hospital because she was so weak. She needed to get more strength so she’d be able to walk when she went home. But she wasn’t understanding this. She kept saying that there were physical therapists on her pueblo who would come to the home to work with her. He tried to explain again but then gave up and said he’d call her daughter.
She had the TV on pretty routinely. She watched a lot of true crime shows (my favorite!) but also football and those competitive fishing shows. That cracked me up. I never turned the TV on; I just listened to hers, particularly the true crime stuff. But mostly, I slept.
The next morning, Dr. Y came in. He is a nephrologist in the same practice with Dr. F. He is also the one who performed my kidney biopsy. He said, “You probably don’t remember me.” I said, “Of course I do.” “Yes, I imagine someone punching holes in your back would make them memorable.” “So what’s the word on the biopsy?” “No biopsy. I talked with Dr. A and she feels that since your creatinine is coming down, it’s not necessary.” Whew! I think that means no prednisone either.
He said he thought the rise in creatinine was from the Bactrim. He asked about my general water intake. I told him that generally, I drink a lot of water throughout the day, typically a minimum of 80 ounces. I am pretty sure he didn’t believe me, but it’s true! I drink a lot of water, and it’s all I drink. I don’t drink coffee or tea or sodas. I’m very boring; I just drink water. But I told him that over the past week I was exhausted and didn’t feel well, and that I was coming home and mostly going straight to bed. So of course I wasn’t drinking as much water as normal—it’s hard to drink when you’re sleeping. He also asked if I had been eating because my potassium was low. Same answer: I was nauseated, I had no appetite, and I was usually asleep shortly after getting home from work. He told me to make sure I drink a lot of water and to make sure to eat. See? Told you he didn’t believe me.
He asked if I wanted to be released that day (Monday) or if I wanted to stay one more night. What a question! I wanted to go home! And if I stayed another night, I’d have to cancel my Tuesday clinic. Nope. I wanted out. He said he’d ask the hospitalist (Dr. B) to come by. Dr. Y said he thought it was in my best interests to get out of there too, due to my compromised immune system.
Dr. B came by shortly after and said he would issue my discharge papers and that I should be out by noon. (It was about 10:30 at this time.) I texted my mom and Kyle with this info but said, “I’m pretty sure noon = 3:00.” And I fell asleep. I had some lunch then fell asleep again and woke up at 2:20. The nurse came in a little later and said she had my discharge patients. It was straight up 3:00 when I was in the elevator. I had to run by Walgreens to pick up a prescription for potassium, just one day’s worth. Dr. A messaged me and said for me to have lab work done again on Thursday. I told her that if I could find a lab that was open past 5:00, I would do so. If not, I’d do it on Friday. (I have my routine lab work done at the hematology clinic that day as well.)
Today I got a call from someone named Hillary from the hospital who wanted to schedule me for a follow up with my primary care doctor. I haven’t seen him in over a year. Of course his schedule and mine didn’t mesh until some time in November, so in addition to that appointment, I have an appointment with a nurse practitioner who basically only sees patients for follow up post-hospital discharge.
Later I got another call from someone else at the hospital: “You have a copay of $175.00 per day when you’re admitted to the hospital.” Oh what a pleasure it was to tell her that I’d already met my out of pocket expense and therefore owed nothing. (This was confirmed Friday night when I checked in at the ER.)
And then I got a call from Dr. F’s office. I have an appointment with her in November but because of this little fiasco, she wants to see me sooner for follow up, so I’ll see her October 20.
So within the next six weeks I have four appointments, plus my routine bloodwork at the hematology clinic. It’s a thrill a minute.
Low, Low, Low 