Zappit's Kidney Thread Part 2: Da Relapse

Zappit

Staff member
I've been fortunate for the last year, as my IGA Nephropathy has been in remission. For those that remember, I was diagnosed almost four years ago, and we caught it late. My kidneys were 25% atrophied, with about 63% scarring over both of them. Not good.

Then, over the next two years, I was in a hell of a fight, taking massive doses of steroids in order to knock my immune system down and stop it from attacking my kidneys. I dealt with acne, fluctuating blood pressure, thinning of my hair and tooth enamel, (stayed sexy, thank goodness :unibrow:) weight gain, chronic hiccups that lasted for days due to a rather unique reaction to the drugs I received via infusion, and extremely vivid nightmares that occurred every other night.

I wasn't supposed to recover as well as I did. I was supposed to have about 10-20 years before a transplant became necessity. But I got better. I was told I might never need a transplant. My kidney functions were way better than they anticipated. I stayed that way for over a year.

And then I lost my grandfather. My condition can be triggered by a number of things, and stress is one of them. I had an extremely difficult time coping, (kinda still am) and I really did myself in. I tested positive for protein in my urine a few days ago, and saw my doctor today. The good news is, the kidney function has not changed. I'm still as good as I was. The bad news is, my protein was up, getting close to the point it starts damaging my kidneys again. I'm doubling my blood pressure meds to get that under control, and it might just set things right again. We're checking it again in two weeks. I've done research on my own, and IGA Nephropathy does commonly recur, but recurrences can be fairly easily treated. My doctor sounded optimistic we get it under control. He did mention, however, that the stress from grief can throw a body off for up to four months before it gets back to normal, so this might be a few long, scary months.

Just cross your fingers for me for the next couple weeks. It might be a simple fix, and I really hope it is. I DO NOT want to go through everything again.
 
Exercise?

I mean, I hear it's good for stress, and it'll give your other major excretory system a chance to pick up a little of the slack.

--Patrick
 

Cajungal

Staff member
Thanks for letting us know, Zap. Thinking of you! Glad the doctors are feeling positive about it. Loss is a difficult thing; I'm so sorry it's affecting your physical health as well.
 

Zappit

Staff member
Hey, here's a nice surprise. Part of my program for monitoring my condition is using at-home urinalysis strips to detect protein. I tested negative for protein this morning. Doesn't mean it's over, but it does mean what we're doing is working.
 

Zappit

Staff member
Okay - update time!

Had some fresh lab work today, and the results were encouraging. My protein levels were at 400 before. Today they were 190. The kidney function has not degraded at all. There is, however, still albumin in the urine, which might just need more time to correct itself.

So we're not changing what we're doing. No additional meds other than the upped dose of blood pressure med.

Feelin' pretty good right now.
 

Zappit

Staff member
Guess what thread I get to revive, but really don’t want to? :confused:

After several years of calm and stability, my numbers have started going the wrong way, and it looks like the disease may be active again.

My doctor is going aggressive, so it’s back to the steroids and I’m getting an adjustment to the blood pressure pills. Hopefully this will turn around quick. I’ve responded well before, and I’ve been able to keep working while on the steroids. He wanted to get me on something newer, but the insurance company was going to drag its feet once the cost is wild - about 40K per vial. At least on the steroids, I can start immediately.

So that’s that - 2020 continues to suck.
 
Guess what thread I get to revive, but really don’t want to? :confused:

After several years of calm and stability, my numbers have started going the wrong way, and it looks like the disease may be active again.

My doctor is going aggressive, so it’s back to the steroids and I’m getting an adjustment to the blood pressure pills. Hopefully this will turn around quick. I’ve responded well before, and I’ve been able to keep working while on the steroids. He wanted to get me on something newer, but the insurance company was going to drag its feet once the cost is wild - about 40K per vial. At least on the steroids, I can start immediately.

So that’s that - 2020 continues to suck.
You know we're still here for you, and I'll still gladly donate @Dave's kidney
 

Zappit

Staff member
You know we're still here for you, and I'll still gladly donate @Dave's kidney
I know, and I appreciate the offer. I know any of you would @Dave's donate kidney.

But we’re not at that point. We’re going with massive doses of prednisone, and this might go back in the right direction soon. I’m confident it will, because I’ve done it twice before.

I am not letting this shit get me.
 

Zappit

Staff member
If I was a match I'd do it. But my liver would be better since it's my least-used organ since I don't drink.

Well, my SECOND least-used organ.
Hey, don’t worry, bud. I’m not at that point yet, and hopefully, it won’t ever get there. We caught the relapse early and are going after it hard.
 

Zappit

Staff member
Update time.

I just had some new blood work done after two weeks on new blood pressure meds and prednisone. They weren’t ideal. I need my creatinine levels to come down, and they went up. HOWEVER, I had the test done the day after the election after a near anxiety attack and sleepless night, which cam3 in the middle of a very sudden and stressful transition to a remote learning schedule. There is a chance the numbers were a stress reaction, so we’re giving it another week so I can settle myself and get new blood work. We’ll see how things go. I’m definitely feeling far less stressed with Biden winning and the remote learning going smoothly now. I’m choosing to remain optimistic.

On the other hand, when you’ve got IGA Nephropathy, which is what I’ve got, you tend to get high levels of triglycerides because the body can’t clean them out as effectively. My number two weeks ago was in the 700’s (Fucking yikes.) This last test had me down in the 200’s. That’s not a bad sign right there.

So cross your fingers for me next week, everyone.
 

Zappit

Staff member
New Update: I had my talk with my doctor today, and he thinks my disease is progressing, so that blood test from yesterday wasn’t as great as I thought. I’ve got to make some significant dietary changes, including eating vegan for most days of the week. Because the creatinine did dip a bit, he wants to give it a month on the new plan we came up with and keep me on the steroids. In a month, we see ho things look. If it doesn’t improve, well...I might have to start looking at joining some trials for some more experimental therapies.

However, I really, really think I can get this back under control. My numbers did improve slightly, and the dietary plan isn’t as absurdly restrictive as I feared. I’m not under very many other restrictions as well.

Just cross your fingers for me next about this time next month.
 

Zappit

Staff member
Had my first lab work in a month after adjusting the diet and meds.

It wasn’t good. The numbers I wanted to go down went up - some quite a bit.

However, I’m also currently fighting an infection and am taking a potent antibiotic. Those can cause spikes in those numbers - some of which can be “false positives”.

My doctor texted me early this morning, though to ask me to call him today. I ran the idea by him about the infection and meds, and while he isn’t ruling that out, he still thinks my disease is progressing...

So, basically, I have to talk to him later, but it’s not a great way to start the day. I really had hope my numbers would get better.
 

Zappit

Staff member
New update: Not a lot of options left right now. I’m going to go on a new drug for six months - one I have to inject. Yay. However, this one might be promising, and can have success when other drugs don’t work.

So, there’s hope yet.
 

Zappit

Staff member
I’ve got six months to try this new drug. I’m going to go into his office next week for instructions on how to self-inject. Apparently this drug is used to treat a variety of immune diseases, but it’s the last few years they started using it for IGA Nephropathy. It looks promising. Basically, it’s a hormone therapy that will be going through my adrenal gland to create a similar, but possibly superior, effect like the steroids.

Six months is a lot of time to possibly turn things around. It’s likely the infection that fucked my numbers this time. That’s the thing about autoimmune disorders. One thing can cascade into others pretty quickly. I suppose it could be worse, since I got on an antibiotic quickly, and it absolutely has helped.

Pretty easy to tell when it gets better when it’s a random, uncomfortable testicle infection. Yeah, fun fucking week.
 

Zappit

Staff member
Time for another update...

Got my latest lab work numbers, and they were not good. The ones I really needed to go down are still creeping up. My kidney doctor just booked me for a biopsy to reassess what’s going on because my kidney disease is progressing. He also mentioned that I might be facing dialysis and a transplant sooner rather than later. Fuck. Fuck. Fuck.

Meanwhile, I still cannot get a new med that might help because my insurance company is stubbornly dragging its feet. My doctor S resubmitting the approval request as an emergency request to hopefully get them off their asses.

So that’s where things stand right now.
 
Time for another update...

Got my latest lab work numbers, and they were not good. The ones I really needed to go down are still creeping up. My kidney doctor just booked me for a biopsy to reassess what’s going on because my kidney disease is progressing. He also mentioned that I might be facing dialysis and a transplant sooner rather than later. Fuck. Fuck. Fuck.

Meanwhile, I still cannot get a new med that might help because my insurance company is stubbornly dragging its feet. My doctor S resubmitting the approval request as an emergency request to hopefully get them off their asses.

So that’s where things stand right now.
We don't seem to have a hug reaction anymore, so uh...
 
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