Damn. Long day today. Started off with a patient in the office at 7:00 am. Then an hour’s drive west to one of our clinics to see two patients out there. Then headed back east 15 minutes to a Native American nursing home to see two patients there. Then back to the office to try to catch up on paperwork. Then over to the infusion lab at 3:10 for treatment. Then back on the road for another 3.5 hours to our clinic in southeastern NM. It’s 8:50, and I’m finally eating some dinner.
Last week, my hemoglobin dipped under 10, although not by much, so it was Aranesp shot time. But it had been right at a month since my last shot so that was a bit of an improvement. Today it was back up above 10. I’m definitely able to tell when it’s above 10 and below 9. I think I’m used to being in the 9s so I don’t feel energetic or sluggish then, just “typical.” (“Energetic” might be a too strong a word to use to describe me, but “sluggish” definitely fits. Maybe slug-like fits better.)
I don’t quite understand this whole creatinine thing (I mentioned this last time): to recap, there are two results that come back. One is called the Creatinine ISTAT, and the other is part of the comprehensive metabolic panel. The CMP one was 1.68 but the ISTAT one was 1.4. Which one is the most accurate one? Hell if I know. Maybe Rose, Nurse Extraordinaire, knows. But I’m adding it to my list of questions for Dr. T.
Today my Creatinine ISTAT was 1.3. I haven’t gotten the results from the CMP yet. My eGFR last week was down to 34. The eGFR is part of the CMP so it also wasn’t available yet today either. I’m sure I’ll get that in the next day or so.
OH—and because of the rise in the creatinine, Dr. T called me (CALLED ME! Didn’t just send me a message) to ask me if was drinking enough water.
I wonder which was louder: my eyes rolling back in my head or the internal scream in my skull. If ONE MORE DOCTOR asks me if I’m drinking enough water, I might turn violent. I drink minimally 80 ounces of water a day. MINIMALLY! A fact I relayed to him. Emphatically. And ALL I drink is water. I don’t drink soda, coffee, tea, and no alcohol either since all this started. Water! That’s it! Brother.
Despite his concern over this rise in creatinine, he did clear me for two whole weeks off from treatment. One was my-already scheduled “off week” but I’m also excused from treatment the week prior to that. (Kyle and I are heading to the southwest corner of NM.) Now, it took several phone calls with the nurses and the schedulers to make this happen. I don’t think they believed I had “permission” from the doc to do this. But they finally cleared it with him. So this was my last treatment until November 10th, when I see Dr. T (the oncologist) again, as well as the diabetes educator. Another fun day off of work filled with doctors’ appointments!
In preparation for my appointment with my PCP (Dr. B) on 10/8, I had blood work done for an A1C test. If you’re not familiar, it is basically an average of one’s blood sugar levels over the past three months. A normal A1C is below 5.7%, 5.7% to 6.4% indicates prediabetes (but really, aren’t we all prediabetic until we’re diabetic??), and above 6.4% means you got the diabeetus (thank you Wilford Brimley).
I got the results from the test that very day, which really surprised me since it was done on a Saturday. I didn’t look at it for several days. For some reason, I had convinced myself it was like 10% or 14%–super out of control. I think I finally looked at it the day before my PCP appointment. It was 7.6%. High, yes, but not horrific like I had irrationally convinced myself it would be. That’s not typical for me. I’m not sure why I was so freaked out by this whole A1C thing given all the other bullshit I’ve had to deal with. But it was actually slightly lower than it was last year, at least according to my endocrinologist.
Dr. B and I discussed the whole blood sugar thing. I told him I didn’t understand why the endocrinologist wasn’t handling this herself. He agreed. He discussed two medications (Metformin and Farxiga) that the endocrinologist specifically said I shouldn’t take. At that point, I think he was a bit frustrated (rightly so), and he said he was just going to refer me back to her to handle this. I mean, duh. It’s the appropriate thing for her take on. So… as of then, no diabetes medication.
I messaged her about a week later (simply just forgot about the whole thing) and relayed all the above. I got a response back from her assistant telling me to call in and to try to get an appointment with the diabetes educator sooner than my current appointment on November 10th. Huh? I’m asking for a prescription. Diabetes educators can’t write prescriptions. I messaged back that Dr. E (the endocrinologist) just saw me. Couldn’t she write me a prescription? I also pointed out that I have a job and can’t just come in whenever.
Hey… guess what… today Walgreens alerted me that I have a prescription for Trulicity, the once a week, non-insulin injectable. Go figure.
At my PCP appointment, we also discussed my positive Cologuard test. Now I need to have a colonoscopy. But I need to do some research first for the “prep” stuff (the stuff that roto-rooters out your insides) to find something that is safe for kidneys. That was what put the kibosh on the previously scheduled colonoscopy: The first stuff they prescribed was no longer manufactured, and the next two stated right in the instructions, “Not to be used with kidney disease.” Then they got mad at me for questioning that, cancelled my appointment, and hung up on me. Ahhhh, medical care. Don’t you just feel all warm and fuzzy? Such concern. So I have some homework ahead of me.
A couple of sidebars. Kidneys in the news!
A new eGFR calculation?
The eGFR is race-dependent because it doesn’t account for differences in muscle mass and body composition across different races that affect creatinine levels in the blood. (Like every other test, it is based on white people.) If you see your eGFR test results, there will be some disclaimer about the need to adjust the value for African American patients. That’s why.
But I just read an article about a new calculation of eGFR that is not race-dependent. Instead of using creatinine levels, it measures cystatin-3, a protein in the blood that doesn’t vary by race. Similar to creatinine, if the levels of cystatin-3 are high, the kidneys are not clearing it from the blood, indicating kidney damage. The study indicated that using cystatin-3 provided accurate and non-biased results.
This is important stuff. It’s well known that health disparities abound in minority populations.
“An accurate eGFR formula that does not rely on self-reported race is a huge leap forward for all people with, and at risk for, chronic kidney disease,” said NIDDK [National Institute of Diabetes and Digestive and Kidney Diseases] Director Griffin P. Rodgers, M.D. “NIDDK is committed to addressing health disparities, and we hope this study’s finding leads to positive changes in how CKD is identified and treated—helping address the risk of systemic bias and error in diagnosing and treating a disease that already disproportionately affects Black people.” Using this new calculation will prevent delays in treatment and medical mismanagement.
I imagine the study will be repeated and expanded but maybe one day instead of getting a creatinine value in my blood work, I’ll see one for cystatin-3.
I just read this last night. Pretty amazing. Much more research to be done, for sure.
The headline: In a First, Surgeons Attached a Pig Kidney to a Human, and It Worked
The link, if you want to read the whole article: https://www.nytimes.com/2021/10/19/health/kidney-transplant-pig-human.html?campaign_id=60&emc=edit_na_20211019&instance_id=0&nl=breaking-news&ref=cta®i_id=21980034&segment_id=72105&user_id=4e4e9338ee3400afbcc8e11acccfd09c&fbclid=IwAR0a-wA2KZVeyD87WTfPYfwOh6gAKQ_6NE_1fOLS8J3JmyjmqUUHuNJ4Tvc
A kidney was grown in a genetically altered pig, then attached to a brain-dead subject kept alive on a ventilator. The kidney began functioning immediately, putting out urine and creatinine. The pig kidney was altered by removing a gene that encodes a sugar molecule that elicits an aggressive human rejection response. Even though the kidney was attached externally to the subject’s leg, the researchers believe this alteration will prevent rejection when implanted in the body. The subject was only studied for 54 hours (I wonder why?) but there were no signs of rejection, and the kidney continued to function normally.
The article said reactions from researchers ranged from “cautiously optimistic to ebullient” but all agreed it was a scientific breakthrough. Most also agreed that this isn’t something that will be available any time soon. Well, unless they just foist it on us unproven, just like they did this UNTESTED COVID VACCINE. (Calm down; I kid. I kid.)
(And PETA doesn’t want pig kidneys available at all: “Pigs aren’t spare parts and should never be used as such just because humans are too self-centered to donate their bodies to patients desperate for organ transplants.” I would be very interested to know how many PETA members are living organ donors.)
Researchers don’t believe this will be limited to only kidney transplants, either. They envision using the technology for transplanting hearts, lungs, and livers.
But these numbers are staggering: Of the more than 100,000 Americans on transplant lists (I actually thought it was higher), over 90,000 are waiting for a kidney. Twelve people on the waiting list die each day awaiting a new kidney. And an additional half-million people in the US are on dialysis. Most dialysis patients don’t qualify for kidney transplants. The reason? There is such a shortage of kidneys available, they will be used only in those patients who are expected to “thrive” after the surgery. Understandable, but god, that’s bleak. “Sorry, you’re just not worthy.”
So this could be a game-changer. Damn.
And to end on a somewhat-trivial note: I was eating an orange the other day, and it tasted so good. It was just a damn good orange. It hit me once more how wonderful it is to taste food again! To go those 14 or 15 months or whatever it was with everything tasting like nothing was its own special brand of hell. I’m so happy that’s over with. Some days nothing beats a damn good orange.
Oh gosh! I forgot to mention that our old boy Arrow came through his surgery just fine. Except they repeated the biopsy on the tumor, and it was malignant! A round cell cutaneous lymphoma. And it was “huge,” according to the vet. “I took about a pound out of that dog.” He feels confident he got it all, but at his age, that’s all we can hope for. We wouldn’t put him through chemo. This surgery was extreme enough for us. But the vet said, “You made the right decision. You saved his life.” Rock on, Arrow!
Creatinine and eGFR: TBD