I had a follow up appointment with Dr. T, the hematologist, today. He was very encouraged by my recent lab results which indicated a significant decrease in my blood creatinine levels and an increase in my GFR (kidney function).
My creatinine, which at one point was nearing 4 (not good) is now 1.4 (high end of normal range is 1.1). My GFR has bounced back to 41. This equates to a percentage of kidney function, so while 41% ain’t great, I’ll take it over the 13-you-need-to-maybe-consider-dialysis percent it was a few months ago.
This weekend I’ll do another 24-hour urine test, and the results of this will give us the missing piece of information. If the Velcade is actually doing what we’re hoping it’s doing, the creatinine will decrease, the GFR will improve, AND the protein in the urine will decrease. The last collection I did was while in the hospital in November, and the protein was right at 4100 mg. Keeping in mind that normal is essentially zero mg, this is still high but much improved over the 10000+ mg it was earlier in the summer. So … no pressure for the test this week. Ha. Not like I can do anything to change the outcome.
Of course I bitched and whined today about all the swelling, and he immediately said, “Let’s reduce the dexamethasone by half.” So now I’m only taking 18 mg a week (on Wednesdays only when I have the Velcade shot), AND on Monday the prednisone will drop down to 5 mg a day for the next month. So by next week I’ll be down from 81 mg of steroids to 48 mg a week. I HOPE this helps!
He thinks the reduction will help my eyes too. God I hope so. They were so puffy and swollen yesterday it was physically difficult to keep them open. When I saw my reflection in the sound booth at clinic, they were just like little slits… and this was late in the day. My patients probably think I’m stoned or something. Now that I think about it, I haven’t had the redness in my eyes so much lately. Good deal.
I just wish I felt better, more like my old self. My hemoglobin remains low and is not responding to the Aranesp as before. No duh, as we used to say in junior high. I’m exhausted all of the time, even though I am sleeping better now. Hemoglobin is in the low 9s, which is better than the 8s for sure, but I miss the days of being in the 10s after getting a shot. Dr. T said that they can still increase the dose and that the 100 mcg I’m receiving now is actually on the low side. But, he cautioned, we want to increase slowly because it can cause clots which lead to strokes. Yes please… ramp up slowly! But as I’ve said before, it would be nice to have some energy again. I often don’t get home from work until 7:00 or 8:00 PM, and I’m just dog tired by then. Making the effort to do whatever needs to be done around the house is usually a no-go. But luckily I’m off most Fridays and also Wednesday mornings right now because my appointments are typically in the afternoon. So I try to get stuff done those days.
I don’t know if I just heard what I wanted to hear or just misinterpreted the plan, but I thought I would be finishing up the Velcade at the end of February. Ha. Good one. I’ll be going in for weekly shots through the end of MAY. Okay, fine, not a huge ordeal, but I’ll need to rearrange my work schedule yet again because I had blocked out Wednesdays only though March (for some reason, I had a feeling it might extend beyond February so I went an extra month just in case). This certainly depends on how I’m doing and what my lab results are showing. As Dr. T said today, “If things don’t stay in this positive direction, then we’ll need to reassess what we’re doing. We don’t want to be pumping chemo drugs into your system for no reason.” Amen, brother. I run the risk of neuropathy, not to mention being immunocompromised while on the drug (although I guess just with kidney disease, I’m immunocompromised anyway).
I’m very lucky to have accumulated a solid shit-ton of sick leave hours before all this started. I’ve been at the same company nearly 19 years, and I’ve rarely had to take sick leave over that time. I did take two weeks off back in 2012 after my thyroidectomy but really, that’s about it. When all this started last summer, I had in excess of 1000 hours of sick leave so the 30 per month I’m taking now barely makes a dent. Over the years I’ve donated 40 hours at a time to our sick leave bank too but that didn’t add up to much either. I used to say, “Look at all these sick leave hours! Now I just need a good disease!” Yeah. Don’t say that. Ha.
IF thing *do* continue in the direction we hope, then after May I will switch to an oral chemo drug called Revlimid, used to treat multiple myeloma. (I guess at some point I need to read up more on multiple myeloma, because even though I don’t have it, I’m being treated like I do. I did a very quick google search right now on “multiple myeloma and kidney function,” and it apparently can cause impaired renal function by damaging the glomeruli and tubules. Yeah, definitely need to do more reading on this so I have a better understanding of how the drugs work.) I would be on Revlimid for the rest of my life. And possibly a low dose of dexamethasone. I hope I heard that last part wrong. But again, we’ll get there when we get there.
My blood sugar is back up. It had decreased to the mid-100s but the last two blood test showed it back up in the low 200s. Not horrendous but not normal. Dr. T thinks that the reduced steroids and less water retention will results in lower blood sugar levels as well. He’d prefer to try that first before adding more meds. At the risk of repeating myself, Amen, brother.
My blood pressure is still high even with the addition of the lisinopril, but it’s better. 130s/90, much improved from the 160s even 170s over 100 – 110s. And Dr. T thinks this should improve soon too.
AND I HOPE TO HELL MY FREAKIN’ SENSE OF TASTE COMES BACK. HAVE I MENTIONED THIS IS BULLSHIT?
So… more just waiting and seeing. You’d think I’d have learned patience by now. Not hardly.
I got my second COVID vaccination today. I know everyone is freaking out over the side effects of the second dose. Just chill! Get the shot! We can handle feeling crappy for one day if that happens. I’m scheduled to work tomorrow so we’ll see how that goes. They always check our temperatures before we’re allowed to start clinic so if mine is high, they’ll just send me home. I’m glad to have gotten it, and ready to move on.
My dog Zeke is scheduled for an echocardiogram this Friday to make sure his big ol’ post-heartworm heart is strong enough for surgery and anesthesia. I think it will be. Despite all he’s been through, he’s a healthy boy. I just feel bad that he has no idea of the hell he’s going to have to go through soon. But dogs are resilient. He’ll get through it.
Hemoglobin: 9.3
Low, Low, Low 