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Zappit's Kidney Thread Part 3: New Kidney, Who Piss?

#1

Zappit

Zappit

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.


#2

Dave

Dave

Let us know if there's anything we can do.


#3

Ravenpoe

Ravenpoe

We're pulling for ya, man. I'll gladly donate @Dave's kidney


#4

bhamv3

bhamv3

Couldn't we all just chip in to buy a black market kidney instead?


#5

Zappit

Zappit

bhamv3 said:
Couldn't we all just chip in to buy a black market kidney instead?
Click to expand...
Man, you don't even know where those have been. Besides, avoiding transplant is the overall goal.


#6

Ravenpoe

Ravenpoe

Zappit said:
Man, you don't even know where those have been. Besides, avoiding transplant is the overall goal.
Click to expand...
Well then you can put @Dave's kidney on a shelf, as moral support.


#7

PatrThom

PatrThom

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


#8

Cajungal

Cajungal

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.


#9

Squidleybits

Squidleybits

I hope you're feeling better soon!


#10

drawn_inward

drawn_inward

Hoping for the best, sir.


#11

Zappit

Zappit

I beat it before. I'll do it again. I've got a much earlier warning this time.


#12

GasBandit

GasBandit

Pulling for ya.


#13

Simfers

Simfers

Dave said:
Let us know if there's anything we can do.
Click to expand...
This. So much this. We're here for ya.


#14

Cajungal

Cajungal

*surprise hug!*


#15

ThatNickGuy

ThatNickGuy

Surprise Bug!


#16

Zappit

Zappit

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.


#17

Zappit

Zappit

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.


#18

Zappit

Zappit

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.


#19

Ravenpoe

Ravenpoe

Zappit said:
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.
Click to expand...
You know we're still here for you, and I'll still gladly donate @Dave's kidney


#20

Zappit

Zappit

Ravenpoe said:
You know we're still here for you, and I'll still gladly donate @Dave's kidney
Click to expand...
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.


#21

Dave

Dave

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.


#22

Zappit

Zappit

Dave said:
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.
Click to expand...
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.


#23

Bubble181

Bubble181

Dave said:
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.
Click to expand...
True, your humor gland doesn't see any use at all.


#24

PatrThom

PatrThom

Bubble181 said:
True, your humor gland doesn't see any use at all.
Click to expand...
*funny bone

—Patrick


#25

Zappit

Zappit

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.


#26

Zappit

Zappit

New update: my latest blood work shows improvement. My creatinine went down, and that’s a number that REALLY needs to go down. I’m talking to my doctor later today, but I’m feeling pretty positive right about now.


#27

Bubble181

Bubble181

Zappit said:
I’m feeling pretty positive right about now.
Click to expand...
Please postppone your Covid test until tomorrow, then.


#28

Zappit

Zappit

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.


#29

Zappit

Zappit

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.


#30

Zappit

Zappit

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.


#31

Tinwhistler

Tinwhistler

Good luck..here's hoping for a good outcome.


#32

Zappit

Zappit

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.


#33

Zappit

Zappit

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.


#34

Dave

Dave

Dude. Let us know if there's anything we can do to help out other than virtual hugs.


#35

Ravenpoe

Ravenpoe

Zappit said:
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.
Click to expand...
We don't seem to have a hug reaction anymore, so uh...


#36

General Specific

General Specific

Ravenpoe said:
We don't seem to have a hug reaction anymore, so uh...
Click to expand...
...I found it, may just be a you problem, there @Ravenpoe


#37

Zappit

Zappit

Dave said:
Dude. Let us know if there's anything we can do to help out other than virtual hugs.
Click to expand...
Not much you guys can do. I just appreciate that I can vent here. That counts for a lot. :D


#38

Ravenpoe

Ravenpoe

General Specific said:
...I found it, may just be a you problem, there @Ravenpoe
Click to expand...
I swear it wasn't them when I looked, just the brofist. But I stand by it... @Zappit we're gonna hump it out


#39

Zappit

Zappit

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.


#40

Zappit

Zappit

Biopsy is over - it went well, and I’m in recovery now until this afternooon.

The procedure was different than the last time I had a kidney biopsy. Much better this go around.


#41

Zappit

Zappit

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.


#42

Bubble181

Bubble181

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.


#43

Simfers

Simfers

What my feathery friend said. You're in our thoughts, Zappit.


#44

Frank

Frank

Zappit said:
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.
Click to expand...
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.


#45

Zappit

Zappit

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!!!


#46

Tinwhistler

Tinwhistler

Brofist is for hope and potentially better outcomes than you feared


#47

Dave

Dave

Fucking insurance companies.


#48

GasBandit

GasBandit

Dave said:
Fucking insurance companies.
Click to expand...
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.


#49

Dave

Dave

GasBandit said:
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.
Click to expand...
Not a FTFY as much as a ITTISBI.

(I think this is a better idea.)


#50

GasBandit

GasBandit

Well, what I meant was, at this point - because of corporate bad-faith acting becoming prevalent, SP has become inevitable, even imminent.


#51

Squidleybits

Squidleybits

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!


#52

Zappit

Zappit

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.


#53

PatrThom

PatrThom

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

--Patrick


#54

Zappit

Zappit

PatrThom said:
1) Don't rush it.
2) Keep us informed (please).

--Patrick
Click to expand...
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.


#55

Squidleybits

Squidleybits

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.


#56

Zappit

Zappit

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.


#57

Zappit

Zappit

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.


#58

Zappit

Zappit

Got the phone call for Transplant School today - they used the words “start the transplant process”. That kind of really brought things home as to where this is all heading. So...yeah. Looking like transplant in the near-ish future.


#59

Zappit

Zappit

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.


#60

Squidleybits

Squidleybits

That is super scary! Please stay safe!

I hope you’re feeling better soon post-infusion.


#61

Dave

Dave

Dude that all sucks. All of it. So sorry to hear.


#62

Yoshimickster

Yoshimickster

Hope you feel better soon bud, sorry you're going through this.


#63

Zappit

Zappit

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.


#64

CrimsonSoul

CrimsonSoul

Zappit said:
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.
Click to expand...
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


#65

Zappit

Zappit

CrimsonSoul said:
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
Click to expand...
I’m off the Prednisone and on Acthar gel. It does a similar thing, and I do have to monitor the blood sugar.


#66

Sparhawk

Sparhawk

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.


#67

Zappit

Zappit

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.


#68

Zappit

Zappit

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.


#69

Zappit

Zappit

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.


#70

Dave

Dave

Ouch, dude.


#71

Zappit

Zappit

Had my pre-transplant meeting today - a 7 hour marathon of meeting everyone on the team, getting tests done, (18 vials of blood taken today) and signing off on a lot of paperwork.

It was...pretty overwhelming. I did not know they leave the original kidneys in and just install the new one next to the bladder. The new one also lasts on average from 12-15 years, so the future isn’t too sure even if it’s a big success.

Pros: The group I’m working with has a higher success rate than the national average by quite a bit.

A transplant gets me back to my normal self more than dialysis ever would. I probably will have to do some dialysis even if we find a donor right away just to clean out the toxins from my blood.

I might get off some of my meds.

Cons: There’s a lot of new meds. The anti-rejection drugs, which I’ll never go off of, might give me diabetes.

In the case of a deceased donor kidney, there’s a very small chance of getting hepatitis. If it’s Hep C and they know it’s carrying Hep C, it’s still a viable kidney because there is a treatment that is 99.9% effective at curing Hep C.

Lots of tubes - there will be a lot of tubes in my urinary system during and after the surgery. I’d rather not discuss that part.

Good note: It also looks like between my insurance and some Medicare I will qualify for, there won’t be many out of pocket costs. This won’t wipe me out - not even close.


#72

Ravenpoe

Ravenpoe

Zappit said:
Had my pre-transplant meeting today - a 7 hour marathon of meeting everyone on the team, getting tests done, (18 vials of blood taken today) and signing off on a lot of paperwork.

It was...pretty overwhelming. I did not know they leave the original kidneys in and just install the new one next to the bladder. The new one also lasts on average from 12-15 years, so the future isn’t too sure even if it’s a big success.

Pros: The group I’m working with has a higher success rate than the national average by quite a bit.

A transplant gets me back to my normal self more than dialysis ever would. I probably will have to do some dialysis even if we find a donor right away just to clean out the toxins from my blood.

I might get off some of my meds.

Cons: There’s a lot of new meds. The anti-rejection drugs, which I’ll never go off of, might give me diabetes.

In the case of a deceased donor kidney, there’s a very small chance of getting hepatitis. If it’s Hep C and they know it’s carrying Hep C, it’s still a viable kidney because there is a treatment that is 99.9% effective at curing Hep C.

Lots of tubes - there will be a lot of tubes in my urinary system during and after the surgery. I’d rather not discuss that part.

Good note: It also looks like between my insurance and some Medicare I will qualify for, there won’t be many out of pocket costs. This won’t wipe me out - not even close.
Click to expand...
They leave the old kidney in? Does that mean you've got your previous old kidney in you right now? How many can they fit in there?


#73

PatrThom

PatrThom

Ravenpoe said:
They leave the old kidney in? Does that mean you've got your previous old kidney in you right now? How many can they fit in there?
Click to expand...
They usually add a third. I suppose if/when that fails they could add another to the other side, so...four?

--Patrick


#74

DarkAudit

DarkAudit

PatrThom said:
They usually add a third. I suppose if/when that fails they could add another to the other side, so...four?

--Patrick
Click to expand...
*Insert "It's all kidneys? Always has been." meme here.*


#75

jwhouk

jwhouk

What, no “Kidneys! I don’t like the colour!” comments?


#76

Tinwhistler

Tinwhistler

DarkAudit said:
*Insert "It's all kidneys? Always has been." meme here.*
Click to expand...
1616209849429.png


#77

PatrThom

PatrThom

Talk about the call of Nature.

--Patrick


#78

Zappit

Zappit

Oh, yeah. They install the new one next to your bladder and hook it up down there. The old ones putter along for a little longer as the new one starts up, and eventually just stop working. You walk out with more kidneys than you started with.

Freakiest thing is that they put in a stent to keep the new hookup tube wide open. Once that’s ready to come out, they numb you up and go up through the bladder to pull it out. Only one access point to do that when they don’t open you up...


#79

Ravenpoe

Ravenpoe

Zappit said:
Oh, yeah. They install the new one next to your bladder and hook it up down there. The old ones putter along for a little longer as the new one starts up, and eventually just stop working. You walk out with more kidneys than you started with.

Freakiest thing is that they put in a stent to keep the new hookup tube wide open. Once that’s ready to come out, they numb you up and go up through the bladder to pull it out. Only one access point to do that when they don’t open you up...
Click to expand...
This would be a real good time to develop a sounding fetish.


#80

Zappit

Zappit

Things just keep getting better. My family has been going through the tests for compatibility, and it turns out my mom has breast cancer. Fuck.

On the bright side, it looks like it’s localized and can be removed surgically. She might not need to get chemo or radiation therapy. It appears to be one cancerous tumor in one spot. We’ll be hearing from him today about scheduling an appointment with a surgeon.


#81

Bubble181

Bubble181

Bright side, without this test it might have gone unnoticed a lot longer and become much worse for her.


#82

Ravenpoe

Ravenpoe

Zappit said:
Things just keep getting better. My family has been going through the tests for compatibility, and it turns out my mom has breast cancer. Fuck.

On the bright side, it looks like it’s localized and can be removed surgically. She might not need to get chemo or radiation therapy. It appears to be one cancerous tumor in one spot. We’ll be hearing from him today about scheduling an appointment with a surgeon.
Click to expand...
I know it sucks, but it sounds like through happy accident you caught it really early


#83

Zappit

Zappit

Bubble181 said:
Bright side, without this test it might have gone unnoticed a lot longer and become much worse for her.
Click to expand...
That’s what I figure, and what I’ve told her.


#84

Zappit

Zappit

Update: Not me this time. My mother had a lumpectomy about a week ago. We got the results today. Her margins are good and she appears cancer free. She’ll have to do radiation therapy and be on a drug to prevent the cancer from returning for five years, but the cancer is GONE. We got lucky.


#85

Zappit

Zappit

Update: Guess whose latest blood test was shit and now he has to go on dialysis? This guy!


#86

Dave

Dave

Dude, that sucks. But thank goodness we have even that ability, you know.

Let us know if there's anything we can do to help out.


#87

Zappit

Zappit

Going to be a loooong week. I’ve got a few pre-op appointments before getting the catheter installed on Wednesday. I had my consultation, so here’s the basics of what they’re going to do:

The catheter will be inserted into my abdomen and the tubing will be threaded (with the assistance of imaging tech) as low as possible into my pelvis. There will be a section that will hold the whole thing in place via scar tissue that will form, preventing the tube from sliding out. I‘ll be under sedation for this - thank goodness - and it should all be done in about an hour or so. I’ll go home the same day.

The dialysis will NOT cycle my blood in and out, but will pump liquid into the catheter to clean me out. Then it will drain/be pumped back out. I don’t know the duration/frequency of the treatments yet, but I’ll get to do them at home. I’ll have to see how I respond to this method as well.

Spent the weekend doing an absolutely MASSIVE clean out of a few rooms of the house. There is a separate group of dialysis nurses that do the training, but they also inspect and approve locations for treatments. If they reject your home, you’re stuck going to a facility multiple times a week. I’m thinking there’s no way they’ll reject anything, though.


#88

Tinwhistler

Tinwhistler

Zappit said:
Going to be a loooong week. I’ve got a few pre-op appointments before getting the catheter installed on Wednesday. I had my consultation, so here’s the basics of what they’re going to do:

The catheter will be inserted into my abdomen and the tubing will be threaded (with the assistance of imaging tech) as low as possible into my pelvis. There will be a section that will hold the whole thing in place via scar tissue that will form, preventing the tube from sliding out. I‘ll be under sedation for this - thank goodness - and it should all be done in about an hour or so. I’ll go home the same day.

The dialysis will NOT cycle my blood in and out, but will pump liquid into the catheter to clean me out. Then it will drain/be pumped back out. I don’t know the duration/frequency of the treatments yet, but I’ll get to do them at home. I’ll have to see how I respond to this method as well.

Spent the weekend doing an absolutely MASSIVE clean out of a few rooms of the house. There is a separate group of dialysis nurses that do the training, but they also inspect and approve locations for treatments. If they reject your home, you’re stuck going to a facility multiple times a week. I’m thinking there’s no way they’ll reject anything, though.
Click to expand...
My grandfather had that kind of dialysis for a good long while. It worked really well for him.


#89

Zappit

Zappit

Out of surgery and back home. Dialysis will start next week.


#90

Zappit

Zappit

Haven’t updated for a while now, but it’s been a rough week.

I started dialysis Wednesday. I spent Monday dealing with violent digestive issues that we found out were related to too many toxins in the bloodstream. My creatinine was almost 15, which is...”how are you still standing ?” territory.

I’m getting PD dialysis, which involves pumping my abdomen full of a solution that draws out toxins through the capillaries, then draining it out. Because I was put on a fast start, I basically had a week to recover from the catheter surgery. Were my innards prepared for that?

No. My tissue is still very sensitive. I suffered quite a bit during the fills and drains cycles yesterday, and walked out feeling like I had been beaten up. Even better, my catheter tube opens up right above a nerve cluster in my taint, which gave me absolute spasms of pain. I actually wrenched my shoulder pretty badly when I spammed.

This morning, it was unbearable. Immediate, intense pain. They ended up switching to a manual method to slow fill/drain me, which was so much more tolerable. They’ll do that for a few more days and hope it trains my insides to accept the new sensations as normal, rather than scream out a pain warning.


#91

Zappit

Zappit

Update - GOOD NEWS FOR A FUCKING CHANGE - My latest blood work shows that the toxins in my blood have dropped - some by as much as one third. I’ve gone from “extremely sick” to just “really very sick”.

Im still not using the automatic cycler for my dialysis, since I’m still feeling some “drain pain”. However, they generally don’t put people on ANY type of PD dialysis until at least a month after the catheter is surgically installed. I started one week after my surgery.

That is because I would not have lasted a month.

Anyhoo, I do have an infection at my catheter site, but that might be finally starting to get better. If alol goes well, a concept I just am not that familiar with anymore, I might be able to log in some hours at work before the summer break.


#92

Zappit

Zappit

Saw my doctor again yesterday and got some new lab results. They were good: calcium, phosphorous, PTH, etc have all moved to ”normal.” My hemoglobin is nearly there. The dialysis analysis that measures how well things are actually working was good. She did increase my dialysis load to 2 liters, so now I’m going to be carrying that much between my organs 24/7. I feel a bit bloated.

I actually went back to work (for a few half days) to finish up the year. I got to see my students, which was a major spirit lifter. They had been asking about me every day while I was away.

It might have been a little too much - I drained over a liter of extra fluid over the course of the second day - but I think it was worth it. I’m feeling better. My numbers are getting better.


#93

Bubble181

Bubble181

Awesome! Very glad to hear it!


#94

Zappit

Zappit

So, um. I‘m one blood test away from having a kidney donor match.


#95

Bubble181

Bubble181

I did not know how to properly respond to that. Hugs that it's needed and congrats that you may have found one?


#96

Simfers

Simfers

Congrugs? Hugrats?


#97

PatrThom

PatrThom

Bubble181 said:
I did not know how to properly respond to that.
Click to expand...
"That's good, right?"

--Patrick


#98

Zappit

Zappit

It’s still early, but it looks like I’ve got a match! My mother got more tests done and cleared them, and has an appointment for an MRA (to map blood vessels) and a physical next month, which wouldn’t happen if she wasn’t a match. Jesus, I could have a new kidney in just a couple months.


#99

PatrThom

PatrThom

nacellles.jpeg


Soon...

--Patrick


#100

ThatNickGuy

ThatNickGuy

Zappit said:
Jesus, I could have a new kidney in just a couple months.
Click to expand...
I'm almost a week late on this, but I hope you like the color of them!

Reference at the 3:30 mark:



#101

Zappit

Zappit

Here I was, planning to give an update on my dialysis, and instead I end up popping in to post I GOT A MATCH and the surgery is tentatively scheduled for late September!


#102

Zappit

Zappit

September 22nd is officially the day. I’m taking care of the details right now - getting signed up for Medicare, (crucial for a kidney transplant) putting in for an extended leave at work, building a comic buffer, and buying some recovery clothes.

I’ve got a few more meetings/appointments, but these are final consultations and bloodwork. I’m looking at - if all goes well - being fully recovered by Christmas. I’d be back at work for the new year.

I’m basically going in to work to greet my students on the first day and then that’s it. I’m going to introduce myself, let them know what’s going on, and let them know I’ll be back. Most of those kids were across the hall from my room last year, and noticed that I was out for over a month. I’m sure they’ll have questions.

Anyway, I’m going to have a lot of time on my hands, and I need some Switch game recommendations. I love action RPGs, and am waiting patiently for Diablo 2 Remastered. What else would scratch that particular itch?


#103

mikerc

mikerc

Zappit said:
I love action RPGs, and am waiting patiently for Diablo 2 Remastered. What else would scratch that particular itch?
Click to expand...
Hades
Torchlight 2 (3 is also available, but isn't as good)
Victor Vran


#104

PatrThom

PatrThom

There's also Diablo III if you want your action RPG to be more on the "action" side of things, or Divinity: Original Sin 2 if you want to go the other direction.

The Internet seems to think that CrossCode might also be an interesting one to try? It's more SNES-ish but supposedly has an interesting storyline. Also Bastion if you've never played it before (or think you might want to run through it again).

--Patrick


#105

GasBandit

GasBandit

Definitely Hades.


#106

Zappit

Zappit

I do have Hades - it’s great. I heard there’s going to be a Diablo 2/3 special pack when Remastered drops, so I’m going to get that.

Torchlight 2 looks good. I think I’ll give it a try.


#107

Ravenpoe

Ravenpoe

Do you love rpgs? How about rpgs that don't have any combat? I swear I'm going to convince someone to play Disco Elysium one of these days.


#108

PatrThom

PatrThom

Zappit said:
Torchlight 2 looks good. I think I’ll give it a try.
Click to expand...
Torchlight 2 IS good. I don’t know how good the story is (because I’ve never finished the whole storyline), but the gameplay is great.

—Patrick


#109

GasBandit

GasBandit

I tried torchlight 2 years ago, and got bored of it very quickly, unfortunately.


#110

PatrThom

PatrThom

GasBandit said:
I tried torchlight 2 years ago, and got bored of it very quickly, unfortunately.
Click to expand...
Didn't you say the same thing about the Diablos?

--Patrick


#111

ThatNickGuy

ThatNickGuy

Ravenpoe said:
Do you love rpgs? How about rpgs that don't have any combat? I swear I'm going to convince someone to play Disco Elysium one of these days.
Click to expand...
I second the recommendation for DIsco Elysium. It's not your average RPG, but it's fantastic.


#112

Squidleybits

Squidleybits

Not an RPG, but what are your thoughts on farm games?


#113

GasBandit

GasBandit

Squidleybits said:
Not an RPG, but what are your thoughts on farm games?
Click to expand...
I mean, Stardew Valley is VERY RPG-ey.


#114

GasBandit

GasBandit

PatrThom said:
Didn't you say the same thing about the Diablos?

--Patrick
Click to expand...
Mmm, no, I think that must have been someone else. I never really played Diablo after the first one.


#115

Squidleybits

Squidleybits

GasBandit said:
I mean, Stardew Valley is VERY RPG-ey.
Click to expand...
You read my mind.


#116

PatrThom

PatrThom

GasBandit said:
I never really played Diablo after the first one.
Click to expand...
I thought you had tried D3 but had "Bleeeaahhhh NOPE"'d out of it in a couple weeks or even less.
Squidleybits said:
You read my mind.
Click to expand...
I just assumed Stardew Valley was a given with the Switch.

--Patrick


#117

GasBandit

GasBandit

PatrThom said:
I thought you had tried D3 but had "Bleeeaahhhh NOPE"'d out of it in a couple weeks or even less.
Click to expand...
Not I, I just never got around to trying it. I don't remember why. Maybe because of the stink with the real money auction house or something? I don't know, that was DEEP in the before-fore time.


#118

Zappit

Zappit

GasBandit said:
I tried torchlight 2 years ago, and got bored of it very quickly, unfortunately.
Click to expand...
I’m playing it now. I’m liking it so far, though it’s a bit of a chore finding my way around.


#119

PatrThom

PatrThom

It's a fairly big map, yes.

--Patrick


#120

Zappit

Zappit

Eight days until surgery. I had my final pre-transplant meeting yesterday. Poked, prodded, ten vials of blood, Covid shot #3... It was a LONG day.


#121

Squidleybits

Squidleybits

Good luck!


#122

Simfers

Simfers

All will be well!


#123

Zappit

Zappit

I was supposed to have my surgery today, but the team delayed it. Monday afternoon, they tell my mother they want to test her for bladder cancer. They don’t want to take any chances because she already had breast cancer, but nothing can go forward until that test gets done. They haven’t even scheduled it yet...


#124

Zappit

Zappit

Test is done, and there’s no cancer! The transplant is back on! Date TBD.


#125

PatrThom

PatrThom

Zappit said:
Test is done, and there’s no cancer! The transplant is back on! Date TBD.
Click to expand...
gowi.gif


--Patrick


#126

Zappit

Zappit

Candy just saved my transplant.

We had to redo the final bloodwork labs since the surgery was delayed, and my mother’s platelets were low. Could have been her rheumatoid arthritis. Could have been the fact that they’ve taken nearly FIFTY vials of blood in less than a month.

The transplant advocate called yesterday afternoon. Fuck, fuck, fuck - this is almost exactly what happened last time. My mother needed to get her platelets retested, if they were too low, we would have to delay again.

We immediately hit Google to try to figure out how to raise platelets fast. Turns out raisins are a food that can do that. We had a big bag of Raisinettes in the house. My mother hit that bag HARD, and the bloodwork today shows platelets at normal levels. Holy shit!

We are still on for Monday, and there’s no more obstacles! This is finally going to be it!


#127

Bubble181

Bubble181

Rooting for you!


#128

jwhouk

jwhouk

You get through this, you need to buy stock in Sun Maid. :)


#129

Zappit

Zappit

Waiting to go to the OR now. My mother is already in surgery to remove the kidney. It’s happening!


#130

Bubble181

Bubble181

Toitoitoi! Break a leg! And all of that!


#131

ncts_dodge_man

ncts_dodge_man

Sending all the good thoughts/vibes your way that everything goes good for everyone involved.


#132

Zappit

Zappit

C3A45FFE-92C5-4D3E-9B33-A9BA6B605AE3.jpeg

I LIVED, BITCHES!


#133

evilmike

evilmike

Yay!


#134

PatrThom

PatrThom

Zappit said:
I LIVED, BITCHES!
Click to expand...
Can’t wait to hear you tell the tale!

—Patrick


#135

Zappit

Zappit

PatrThom said:
Can’t wait to hear you tell the tale!

—Patrick
Click to expand...
When I’m up for it, I’ll post a full story. Probably tomorrow, because WOW, what a difference a healthy kidney makes!


#136

Ravenpoe

Ravenpoe

Zappit said:
View attachment 39092
I LIVED, BITCHES!
Click to expand...
OH SHIT
*starts putting zapp's stuff back*
I knew you'd pull through


#137

Zappit

Zappit

Had my first visits from the doctors this morning. The new kidney is functioning very well. My creatinine has come down, I’m producing a lot of urine, and the blood flow is great, too. One of the surgeons said this is up there with their best transplants.

It’s also probably going to be the most painful day. The pain meds they injected into my belly will fully wear off, and then it’s just oral painkillers. They’ve already had me up on my feet and put me into a chair - that movement is good for the new kidney - speeds up healing. I’m getting to eat today.

They were checking on me every hour last night, which kept me from sleeping last night; I’m worn out.


#138

ThatNickGuy

ThatNickGuy

Zappit said:
I’m producing a lot of urine
Click to expand...
Man, that must piss you off.


#139

Frank

Frank

This is awesome.


#140

blotsfan

blotsfan

Man this thread has been going on for 6 years. Congrats and I hope this is the beginning of a normal life for you.


#141

Zappit

Zappit

Mom’s going home today, and I might be going home tomorrow. At the very least, they’ll be taking the urine catheter out. I was able to bend enough last night to get a good look, and GOD DAMN, that thing is a nightmare.


#142

Dave

Dave

Zappit said:
Mom’s going home today, and I might be going home tomorrow. At the very least, they’ll be taking the urine catheter out. I was able to bend enough last night to get a good look, and GOD DAMN, that thing is a nightmare.
Click to expand...
So is the thing that’s in it.


#143

General Specific

General Specific

I want to like for the going home, but not for the apparent "nightmare" that is your penis

Hmmm, "Nightmare penis" where have I heard that before? Oh right, high school


#144

Zappit

Zappit

At home now and resting. Very tired, and there’s a lot of follow-up appointments ahead. But man, it’s good to be home!


#145

Cat

Cat

Ravenpoe said:
Do you love rpgs? How about rpgs that don't have any combat? I swear I'm going to convince someone to play Disco Elysium one of these days.
Click to expand...
As a fucked up leftist I felt very seen by Disco Elysium


#146

Ravenpoe

Ravenpoe

Cat said:
As a fucked up leftist I felt very seen by Disco Elysium
Click to expand...
1635380198462.png


#147

Cat

Cat

Ravenpoe said:
View attachment 39287
Click to expand...
Lol and all the rambling about incremental change. It's gonna break my heart when I replay it as a fascist


#148

Zappit

Zappit

Just about three weeks later and I’m doing really well. I’m up and moving about with much less discomfort - I’m off painkillers entirely. They are still tweaking my meds to get things balanced better, but overall it’s great.

The stent in the kidney that’s helping urine travel from the kidney to the bladder comes out on Monday. I think I’ve covered that before, so let’s not revisit the way they perform that procedure.

My coworkers donated sick days to me - enough to carry me through my entire recovery. I work with wonderful people.

Honest to God, I am really not used to things going well.


#149

Bubble181

Bubble181

Awesome!
That means we'll soon get new Huzzah updates right?
... What? Why is everyone looking at me like that? I didn't mean... Ahhh help :aaah:


#150

Cat

Cat



#151

Dave

Dave

The fact that they had to donate sick days is fucking stupid. Other than that, total win!


#152

Cat

Cat

Dave said:
The fact that they had to donate sick days is fucking stupid. Other than that, total win!
Click to expand...
Capitalism is the greatest system in the world, have you tried hustling more?


#153

Zappit

Zappit

Bubble181 said:
Awesome!
That means we'll soon get new Huzzah updates right?
... What? Why is everyone looking at me like that? I didn't mean... Ahhh help :aaah:
Click to expand...
Honestly? I don’t really know. I’ve tried to get back to drawing it a couple times, but it just doesn’t feel quite right. I started that comic when I was in a very dark, very bad place. I don’t think I want to go back to that. I might just drop it and do something new.


#154

blotsfan

blotsfan

Dave said:
The fact that they had to donate sick days is fucking stupid. Other than that, total win!
Click to expand...
I mean if they didn’t then people would just get kidney transplants for the free time off.


#155

Simfers

Simfers

Zappit said:
Honestly? I don’t really know. I’ve tried to get back to drawing it a couple times, but it just doesn’t feel quite right. I started that comic when I was in a very dark, very bad place. I don’t think I want to go back to that. I might just drop it and do something new.
Click to expand...
You do whatever feels right, we're just happy to have you still!


#156

GasBandit

GasBandit

Even if you decide not to go back to Huzzah, I look forward to reading whatever project you start next. I liked both Huzzah and Supervillainous, and I'm sure I'll like whatever you decide to do next.


#157

Bubble181

Bubble181

I was (hopefully obviously) being tongue in cheek. I'm much happier that you'll be okay than I would be with any amount of comics.
If Huzzah doesn't fall right to you now/anymore, I'm sure whatever might be next will be worth our time as well :)


#158

Cat

Cat

Bubble181 said:
I was (hopefully obviously) being tongue in cheek. I'm much happier that you'll be okay than I would be with any amount of comics.
If Huzzah doesn't fall right to you now/anymore, I'm sure whatever might be next will be worth our time as well :)
Click to expand...
I sure hope I was obvious too or that's a real bad look for me


#159

Zappit

Zappit

Had the stent removed today. Remember when I mentioned they’d numb me up before shoving anything up my piss-hole? Well, apparently, THAT WAS A NOPE. No numbing agents given. Just injections of lubricants and saline and in goes the camera and the extraction wire. Took about half a minute, but it felt like an hour. Hurt like hell. I’m pissing some blood and probably will for a few days. Any disruption to the stent can cause some bleeding, and taking it out is a very big disruption.

On the other hand, I’m still pissing, so it looks like the path between kidney and bladder didn’t close up. That’s good.


#160

PatrThom

PatrThom

“Mr. Unhappy.”

—Patrick


#161

Zappit

Zappit

Hey, right now, I don’t have any stents, tubes, or machines keeping me alive. I’m pretty damn good right now.


#162

Zappit

Zappit

It was just going too well.

my last blood test showed certain antibodies that can attack the kidney. Doesn’t mean they are, but they’re present. My creatinine has been steady, which is a good sign. Even ticked down just a little.

They’re going to biopsy the new kidney this week to check, and put me on a new immunosuppressant to hit those antibodies. I’m also likely going to get infusions to further knock things down.

Even if this is an early sign of rejection, it looks like it can be reversed, and that the majority of similar cases do in fact get reversed. But the numbers are still good, so I don’t know.


#163

Zappit

Zappit

They called back. It apparently sounds worse than it is. It sounds like they put me on a second immunosuppressant and that might be the end of it. It’s treatable.


#164

Dave

Dave

Well that was a rollercoaster. Glad everything is okay!

Live to be catfished another day!


#165

Zappit

Zappit

Fuck yeah.


#166

Zappit

Zappit

Biopsy done. In recovery for the next few hours.


#167

Zappit

Zappit

Well, the antibodies are in the kidney, but haven’t done any damage yet. But they gotta go.

I’ll be getting a port in my neck tomorrow, and start phyresis/infusions to neutralize the antibodies and (hopefully) prevent more from generating.

I’ll have this thing in my neck for two weeks, during which time I will not be able to shower. Fuck. They do have a very high success rate with this, though, so there’s that.


#168

Simfers

Simfers

When my wife broke her leg in January 2020, she spent four days in the hospital and several weeks where she couldn't shower (she couldn't physically get in). The hospital had this no-rince cleaning stuff (we stole a bottle and then got one at a medical supplies store here). She swears it felt like she'd just showered. Won't help for your hair, but at least it'd do something for the rest of ya. Here's a pic of the bottle (the brand is Tena):

20211115_175711.jpg


#169

drifter

drifter

They make dry shampoos, if that is acceptable for the port. Honestly didn't care much for the one I tried, though it might work better on short hair.


#170

Zappit

Zappit

Plasmapheresis is pretty incredible. I didn’t feel anything, but it cycled 67% of my blood today. They removed the plasma and gave me fresh stuff. I couldn’t take any of my meds until after because the process would have taken that out of me, too.

That means I took roughly 20 pills on an empty stomach right before an infusion that could cause nausea.

Well, you might venture a guess as to how that went. Lesson learned - eat first next time!


#171

Zappit

Zappit

Have I got an update today!

Guess who barfed - again - during his infusion? This guy!

Here’s the best part: it was entirely preventable. I had a Zofram pre-med prescribed whichreally does the trick. My nurse CHOSE NOT TO GIVE IT TO ME DESPITE DOCTOR’S ORDERS.

Well, that caused a shitstorm, and I think she’s in a hell of a lot of trouble. I did talk to my transplant center and told them straight-up I do not want to work with her again. I was hoarse for two days because my reaction was so violent. I am not doing that four more times, minimum. My body can’t take it. Plus, I’ve got to get a one-time chemo infusion on one of these sessions. That’s going to make me even sicker.

FYI - Totally fine now. Just don’t want to be sick when I don’t need to be.


#172

PatrThom

PatrThom

Sounds like you and @Squidleybits could compare notes.

--Patrick


#173

Zappit

Zappit

Biopsy this past Tuesday.
Chest catheter out yesterday.
Both hurt quite a bit.
But.
BUT.
GUESS WHO GRADUATED OUT OF HIS TRANSPLANT CENTER TODAY, SIGNALING THE END OF A SUCCESSFUL TRANSPLANT PROCESS


#174

Ravenpoe

Ravenpoe

Zappit said:
Biopsy this past Tuesday.
Chest catheter out yesterday.
Both hurt quite a bit.
But.
BUT.
GUESS WHO GRADUATED OUT OF HIS TRANSPLANT CENTER TODAY, SIGNALING THE END OF A SUCCESSFUL TRANSPLANT PROCESS
Click to expand...
Oh, what, so now you're filtering your own blood you think you're special?


#175

Squidleybits

Squidleybits

That’s fantastic! Congrats!


#176

Zappit

Zappit

Got the follow-up biopsy and blood results yesterday. The biopsy looked better than the previous ones, and the blood labs are all looking normal. My doctor is pleased where we’re at, and we’ll just monitor those donor-specific antibodies going forward.

I’m officially closing Part 2: Da Relapse. IT. IS. OVER.

Now on to Part 3 - New Kidney, Who Piss? - and I could not be happier!


#177

Simfers

Simfers

I'm legitimately getting choked up here, so happy for you my dude.

Here's to your continued healthy life!:drunk:


#178

Zappit

Zappit

Guess I’m going back to work sooner than expected because the fuckers want to fire me for my leave going so long. They sent me a letter of intent to terminate with ten days to respond.

Union’s already getting a lawyer from the state union level. Seems like if I get a doctor’s letter clearing me to return, this can just get resolved. Gonna see. Probably will be fine.

Fuck ‘em if they do it. I’ll find work elsewhere. I didn’t go through all that to stress over this.


#179

Zappit

Zappit

Got the documentation I needed and I’ll be having an accommodations meeting later this week. Looks like my job is safe.

Hell to the fuck yeah.


#180

Zappit

Zappit

I’m back to work tomorrow!


#181

Zappit

Zappit

Got all the accommodations I hoped for, and I’ll just be shadowing the sub who’s been covering for the next two days to get all caught up. The it’s vacation week. I get paid for all of it.

That feels a bit like justice.


#182

Zappit

Zappit

One month back to work and feeling STRONG. Test results are holding steady at normal.

Today’s my birthday. I very nearly almost didn’t get this one. It’s amazing to look back on the past year and how wild it was. I’m getting more energy. I want to be more active, especially here. And I want to have more than just FaceTime dates with my new girlfriend.

Here’s to a better year!


#183

PatrThom

PatrThom

Wow, has it only been a year? It feels like so much longer.

--Patrick


#184

Zappit

Zappit

Kidneys failed badly this time last year. Already better.


#185

Zappit

Zappit

I like posting good news. We’ve passed seven months and all tests are still good. My doctor said the new kidney is “excellent” and everything is looking good. The rejection antibodies are going down on their own and will probably just fade away for good.

I’m getting muscle mass and stamina back. My torso muscles healed up nicely and I’m able to lift more. Can’t overdo it, but this year I’ll get to swim in my own pool because I don’t have an open wound in my gut. That will help even more.

Health is NICE.


#186

Zappit

Zappit

Well, I resigned from my job yesterday and I’ve taken a new one in a new district.

VERY long story short - I was targeted by admin once my health declined, with my supervisor even breaking FMLA law by repeatedly contacting me and even asking me to do work. She even tried to terminate me while I was still on medical leave. I came back to a hostile work environment. She tried again to terminate me at the end of the school year by falsely accusing me of lying about a very minor error. I went through the process with my union and a union lawyer, and we have counters to all their claims and evidence they repeatedly lied. Basically, admin was not even attempting to deal in good faith. So, instead of going to a final meeting today where said principal would have likely immediately formally terminated me, I resigned and stated in my letter that it was due to a hostile work environment. I had gone to a couple interviews during all this. Two interviews and two job offers. Fuck yeah.

It will be less pay at the new job and it’s not a classroom teacher, but I never really got a real recovery period having been forced back to work before I was ready and thrown into the fire. A little less responsibility isn't a bad thing because it won’t be as hard on my body. Plus, this district LOVES to promote from within. I’ll get back into a classroom again. Even better, my new building is AIR-CONDITIONED.

And yes, I know I have one HELL of a lawsuit - FMLA violations and retaliation, medical discrimination, hostile work environment, and possibly even defamation. Fuck, this district didn’t even fire a teacher who SHOVED a kid. I was getting fired for a data error on an irrelevant form that no one will ever look at again. My union head told me to keep in touch because even though I‘m no longer part of that union now, they’d back me to help prevent this shit from EVER happening to anyone else.


#187

Bubble181

Bubble181

Don't know how it's set up where you are; around here you'd have been better off letting them wrongfully terminate you...Even if you start a new job the very next day, they'd still be paying you months of wages lost for it, in addition to whatever they'd be paying for the medical crap.

Good luck in the new job, though!


#188

Simfers

Simfers

Congrats and all tbe best in the new job, Zappit! That's wonderful!

From having seen my wife fight her former employers over harrassment and a hostile workplace (for the record, she won the whole thing), that's the kind of shit that DRAINS you. Be prepared for a long, hard, dirty fight. Although, unlike her, you seem to have a supportive union, so that'll help a LOT.


#189

Zappit

Zappit

Bubble181 said:
Don't know how it's set up where you are; around here you'd have been better off letting them wrongfully terminate you...Even if you start a new job the very next day, they'd still be paying you months of wages lost for it, in addition to whatever they'd be paying for the medical crap.

Good luck in the new job, though!
Click to expand...

In this case, this accusation, which is provably bullshit, the district would be required to report the reason for termination. By resigning, I likely don’t get a black mark attached to my license. It’s still part of a pattern of workplace hostility, though. Given that I put a hostile work environment as the reason I resigned, they wouldn’t dare file a report with the state Ed dept. It would look all the more malicious and give me a stronger case. They were stringing my union head and I along to get to the termination hearing because, I suspect, they thought they would have a stronger claim if I sue.


#190

Zappit

Zappit

I’ll just add this. Our side requested a transfer as a way to end this last week. There was an open position at another building in the district I could transfer into. They told my union head they’d consider it after consulting with their lawyer. Then silence. He followed up and nothing. Then he went into the superintendent’s office to get an answer. Then, they suddenly didn’t have any openings, but were open to letting me stay at my current position under the principal who was making things so awful for me. The one who made the accusation, served me a termination notice the day after, then took a month to deliver the results of her investigation. (where almost half of which contradicted her actual accusation) They were NEVER dealing in good faith, and were trying to bait us into attending the final hearing Where they could then formally terminate me. That’s why I resigned, and I put it in my resignation letter that it was due to a hostile work environment.


#191

Zappit

Zappit

Started a new job in a new district last week. Not a teacher position, but this district loves to promote from within. (The admin who interviewed me even called a few days before I started me to verify my licensure because he thought he had a teacher position for me. It was a license I don’t have.)

It’s a lighter schedule, and less stressful. Pay‘s a lot less, but with a good chance for advancement, I think it was worth taking a chance. My old job forced me back to work early and it cut my recovery short, so the lighter load is letting me recuperate a bit better. It’s also a MUCH better environment and culture there.


#192

Zappit

Zappit

Guess what today is? It’s my one-year Transplant-aversary!

Even better - I had a regular check in a week ago, and the last antibody test I had showed...NO REJECTION ANTIBODIES!

God, I love posting good news in this thread!


#193

Bubble181

Bubble181

Zappit said:
God, I love posting good news in this thread!
Click to expand...
Yes, it's quite nice seeing this thread pop up and not default to "oh god I hope it's nothing serious" mode. I'm genuinely very happy for you at how it's going now.


#194

Zappit

Zappit

I‘ve got peace of mind now. Those antibodies going away entirely means that there’s al,pst no chance the ever come back. It means the kidney is going to stick.


#195

Bubble181

Bubble181

Zappit said:
It means the kidney is going to stick.
Click to expand...
Just add a bit more oil before putting it in the pan.
1665563456780.png


#196

Zappit

Zappit

Bleh...I’ve had protein in my urine since the transplant. My doctor thought it might have been my original, damaged kidneys still working a bit. But it went up, so they’re switching one blood pressure med for another. This one actually lowers that protein, which is great.

There’s a lot of things that can affect protein in the urine - high blood pressure, (my BP has gone up since starting the new job) strenuous exercise, (I’m logging an average of 4-5 miles minimum walking each day since the new job started) dehydration, (I might not be drinking enough to keep up with the exercise) or kidney disease. No one’s using that word right now. They’ve put a lot of people on this new BP drug (losartin) and it does wonders for the protein. In all likelihood, I just need to have better BP control and drink more water. It’s one of those things to tweak along the way to keep things balanced.

Everything else in my tests was fine, which is why no one is particularly concerned right now. (good thing)


#197

Zappit

Zappit

Remember that last post where I said nobody was using the words ”kidney disease?”

Welp.

The urine protein is still high, but has been trending down. That’s good. But my doctor now cannot rule out my IGA Nephropathy recurred after the transplant. He can only say he suspects it is back.

Now, for the good news in this:

There is no damage to my kidney. None.

There are currently two drugs specifically approved to treat IGA Nephropathy that were not available before my kidneys failed. I‘m currently on one and in the three days I was taking it, my urine protein dropped 12 points. I’ve got the other coming tomorrow to start that. They’re both new, orphan drugs, so it was hell with the insurance company, but both have apparently proven to be very effective at reducing urine protein down to zero. (I’m on pay assist for one and got a copay card for the other so neither is costing me a dime.)

No urine protein means there’s nothing damaging the kidney. It‘s currently much lower than it was and it was dropping before I started the new treatment, so the odds of getting this under control and staying safe for the long-term are very good. When I was originally diagnosed years ago, I was on the edge of stage four and they kept me going for ten years without the tools available now. This is stage 0.5 at most. I’ll long outlast the disease this time.


#198

Simfers

Simfers

You can do this, Zappit. Kick that disease right in its stupid face.


#199

PatrThom

PatrThom

…with your energy legs.

—Patrick


#200

Zappit

Zappit

I’m not worried. The numbers are going in the right direction, and the lower the urine protein, the less damage to the kidney. I have no damage so far and things are on track. I have less stress in my life now that I’m out of that toxic old job of mine, and after everything I went through, I have a very different perspective on life. Oh, and if you read back a bit and review the hell I went through regarding exiting that job? Little update there - the union head who fought so hard for me just took a new job himself. He’s one of my new bosses. :D


#201

Zappit

Zappit

Well, the new drugs work. My urine protein levels are, as of this morning, within the range considered to be normal!


#202

Zappit

Zappit

Simfers said:
You can do this, Zappit. Kick that disease right in its stupid face.
Click to expand...
Guess what, @Simfers - I FUCKING DID!

Latest checkup today and my doctor declared I’m in COMPLETE REMISSION. The new treatments have proven very effective and my numbers are in the normal range and holding steady. I’m lucky. IGA Nephropathy recurring post-transplant is so rare, there’s no recommended treatment. The drugs I’ve been taking are intended for pre-transplant patients, and experts argued they would also work post-transplant. They are, in fact, working post-transplant.


#203

Simfers

Simfers

Zappit said:
Guess what, @Simfers - I FUCKING DID!

Latest checkup today and my doctor declared I’m in COMPLETE REMISSION. The new treatments have proven very effective and my numbers are in the normal range and holding steady. I’m lucky. IGA Nephropathy recurring post-transplant is so rare, there’s no recommended treatment. The drugs I’ve been taking are intended for pre-transplant patients, and experts argued they would also work post-transplant. They are, in fact, working post-transplant.
Click to expand...
Fuck yeah, my dude! Always knew you could do it! Disease never stood a chance!


#204

GasBandit

GasBandit

Zappit said:
The drugs I’ve been taking are intended for pre-transplant patients, and experts argued they would also work post-transplant. They are, in fact, working post-transplant.
Click to expand...
Does that mean your case is going to be cited in a paper?


#205

Zappit

Zappit

I don’t know, really. My nephrologist is semi-retired so I don‘t think he’s writing many papers, but the manufacturer of one of the drugs is collecting data on patient progress. I’m okay with that. They’re giving it to me for free on their patient pay assist program, and this is a ”costs as much as a house” orphan drug.


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