Zappit's Kidney Thread Part 2: Da Relapse

Zappit

Staff member
Little update - I go in for my biopsy at 9:30 in the morning. Takes about a half hour prep-finish, then I’ve got a four hour recovery time. They’ve got internet, so I’ll be bringing the iPad.

Also, no food or drink after midnight. They really gonna put a man on MASSIVE doses of steroids under Gremlins rules?

I’m just hoping it goes a bit better than my last kidney biopsy years ago. The local anathema didn’t quite set in all the way on the left side, and I felt it. It wasn’t pleasant.
 

Zappit

Staff member
So...talked to the doctor today, and it wasn’t great. He doesn’t have all the final numbers and data from the biopsy yet, but he does think that the disease is in a crescent - basically accelerating. Not good.

The insurance company finally approved the new injection med (good) and I’ll be able to start that within a couple days. That might help. My doctor also wants to start me on a chemo drug (low dose) infusion. Not much other information on that front - he’s waiting for final results before formalizing things.

It’s a bit demoralizing. I don’t know what the deal will be with this chemo drug. I’m already in a vulnerable position at work, being a teacher and all. If I’m on something that knocks my immune system down even more, I don’t know if I’ll be able to continue working.

Things are still early, I guess. It just really sucks, and I’m so fucking pissed at the insurance company dragged their feet for two goddamn months. If the new drug makes a difference, that’s damage done and time lost.
 
Wish I could do more than give you a virtual hug. But, well. Best of luck, it sucks. I hope the meds'll work and things will go back to sucking somewhat less.
 
So...talked to the doctor today, and it wasn’t great. He doesn’t have all the final numbers and data from the biopsy yet, but he does think that the disease is in a crescent - basically accelerating. Not good.

The insurance company finally approved the new injection med (good) and I’ll be able to start that within a couple days. That might help. My doctor also wants to start me on a chemo drug (low dose) infusion. Not much other information on that front - he’s waiting for final results before formalizing things.

It’s a bit demoralizing. I don’t know what the deal will be with this chemo drug. I’m already in a vulnerable position at work, being a teacher and all. If I’m on something that knocks my immune system down even more, I don’t know if I’ll be able to continue working.

Things are still early, I guess. It just really sucks, and I’m so fucking pissed at the insurance company dragged their feet for two goddamn months. If the new drug makes a difference, that’s damage done and time lost.
Man fuck having to deal with all that bureaucratic nonsense. I'm so sorry Zap. I hope the injections help and things go more smoothly.
 

Zappit

Staff member
I do have some news. The insurance company just won’t approve the expensive new drug, so my doctor worked it out with the manufacturer to supply it to me at no cost. Also, if the insurance company does eventually approve it, I’ll have copay assist to cover those costs. I might be able to start on Friday if it ships soon enough. So that’s good news. I suspect the biopsy was to provide data emphasizing the need for this drug.

It also looks like the chemo drug I need will only be a one-time infusion. They’re going to blend it with solumedrol. Here’s a fun fact. I’ve had that through infusions before, and it gave me hiccups for days. However, it was effective. Chances are I am going to feel like absolute shit for awhile, but it may not be as bad as I feared. I might have to take some time off, but I might not have to take a lot of time off. It’s still a conversation I need to have with my doctor.

Time to fucking hope again!!!
 

GasBandit

Staff member
Fucking insurance companies.
Here's me, a libertarian, saying that an insurance company denying a claim to pay for a procedure or prescription dictated by a licensed healthcare professional should constitute criminal breach of contract.

They should not be allowed to legally say no.

But the fact that they can, and always do as their first resort, is why we're going to have single payer.
 

Dave

Staff member
Here's me, a libertarian, saying that an insurance company denying a claim to pay for a procedure or prescription dictated by a licensed healthcare professional should constitute criminal breach of contract.

They should not be allowed to legally say no.

But the fact that they can, and always do as their first resort, is why we're going to SHOULD HAVE have single payer.
Not a FTFY as much as a ITTISBI.

(I think this is a better idea.)
 

GasBandit

Staff member
Well, what I meant was, at this point - because of corporate bad-faith acting becoming prevalent, SP has become inevitable, even imminent.
 
I hope you’re feeling better soon now that you can try the new meds. The chemo meds may make you feel super gross. If they do, ask for Zofran. I have had a lot of luck with that helping with the nausea from those meds.

Feel better soon!
 

Zappit

Staff member
Okay, things are finally moving. I’m getting my new med tomorrow and going to my doctor to get instructions on how to self-inject it. I’ve got my chemo infusion booked for the first day of the winter break, so I’ll have some down time afterward. This is good. I also found out the chemo drug itself is a very low dose, so the sickening effects might not be as bad. On the downside, the infusion takes five HOURS. Yeesh.
 

Zappit

Staff member
1) Don't rush it.
2) Keep us informed (please).

--Patrick
1) Oh, I’m not rushing it. This was all supposed to happen weeks ago. The new drug is something I only have to take twice a week, which is good. I also get to get off my 60 mg of prednisone a day regimen. If you’re unfamiliar, that’s a hell of a lot of steroids. I’ve had bad side effects from it, including fluid retention. I’ve had a few days where I look like the fucking Michelin Man. That might go away once I get off the prednisone. I’m very much looking forward to having my legs return to their normal girth, and to not feel the insides of my legs slosh around when I walk. That’s very unnerving...

2) You know I’ll keep you all in the loop. You’ve been my tribe since the Image Board days.
 
That’s a ton of steroids. Hopefully it’s not for too long. For what it’s worth, I’ve had side effects from prednisone fade after the course. I hope you start to feel better soon.
 

Zappit

Staff member
Just had my visit with the doctor. He will be signing me up for transplant classes. If the new drug doesn’t produce a “semi-miracle” - his words - I’m on that path. It’s at that point.

Good news is I can still work as long as I feel well, which I do. I have a few potential donor candidates in my life, and if I get a transplant, I’ll have to miss about three months of work. The timeline might even line up with the summer vacation, which means I won’t even burn up all my accumulated sick days.

It’s not good news by any means, but it’s honestly not as terrible as I anticipated. I’m okay mentally, and I know I’ll be okay physically when this is over, regardless of how it plays out.
 

Zappit

Staff member
Don’t know if it’s the new med, or just being off the mega doses of Prednisone, but I’m feeling a bit better. The fluid retention is going down - got a diuretic for that, too - and I’m just overall feeling stronger. Feels nice.

Got a low-dose chemo infusion scheduled for Saturday, so that might help improve things, too. It’s by no means an indication of a turnsround, but it’s certainly more comfortable.
 

Zappit

Staff member
Got the chemo infusion yesterday. So far, so good. I didn’t feel too sick afterward, but I have been tired. It took about five hours. I got a bit of drawing done. Little bit of reading.

Best part was that I got a call from my principal in the middle of it. One of the kids in one of my the classrooms I work in tested positive for COVID, and they needed to verify if I was a close contact. Thankfully, I’m probably not and am in the clear, but still... not a fun call to get when they’re busy dynamiting your immune system.
 

Zappit

Staff member
I did not know that you can have a delayed reaction to chemo medication. That came as a surprise. I think it was the steroids wearing off, but damn, did it kick my ass yesterday.

Better today. Got some Zofran, which - very good stuff - by the way, and I’m hoping I’m through the worst of it. This was supposed to be a one-time treatment, so fingers crossed it does something. I’d happily take my kidneys stabilizing right about now.
 
I did not know that you can have a delayed reaction to chemo medication. That came as a surprise. I think it was the steroids wearing off, but damn, did it kick my ass yesterday.

Better today. Got some Zofran, which - very good stuff - by the way, and I’m hoping I’m through the worst of it. This was supposed to be a one-time treatment, so fingers crossed it does something. I’d happily take my kidneys stabilizing right about now.
Just curious, if you're still on the prednisone have you been checking your blood sugar? corticosteroids can cause you to have elevated blood sugar while you're on them
 

Zappit

Staff member
Just curious, if you're still on the prednisone have you been checking your blood sugar? corticosteroids can cause you to have elevated blood sugar while you're on them
I’m off the Prednisone and on Acthar gel. It does a similar thing, and I do have to monitor the blood sugar.
 
My wife basically crashed the day her steroids wore off each week. She usually had her infusions on Thursday, worked Friday and on Friday evening her steroids would start wearing off and she’d be crashed all day Saturday and be back at it on Monday.
 

Zappit

Staff member
Fresh update:

I haven’t had any blood tests since the chemo, but I have had the diuretic adjusted with good results. I’m down fourteen pounds of fluid weight, and I’m getting through each day with only a little bit of fluid retention - some days with virtually none. It’s a world of difference.

I’ve been working all week and feel like I’m gaining steam instead of losing it. We have a Dr. Seuss week coming up and I’m making a four foot tall Cat in the Hat poster for it. A few weeks ago, I made a poster for another event. I had hand tremors, low energy, and it took a lot out of me to do it. Today - completely different story. Steady hands, fast work speed...I felt like myself again. I don’t know if it means some of these treatments are working, but they sure seem to be better than the prednisone.
 

Zappit

Staff member
Got blood work today - first since the chemo and about a month after starting the new drug - but I won’t get the results until tomorrow. Fingers crossed for any kind of reversal of recent testing trends.

Also have my first pre-transplant meeting scheduled for April. I’ll be meeting the team and starting up the process. However, if I get a couple promising test results between now and then, it might not be as necessary.
 

Zappit

Staff member
Aaaaannnnnd the results sucked. The creatinine jumped three whole points, which is really, really not good. It could be the diuretic I’m on is drying me out too much now and dehydrating me. We’re going to go off them for a week, get new tests, and see what they say.

Might be looking at dialysis soon.
 
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