I have been diagnosed with two rare kidney diseases. Any advice?

Downhome · Oct 2, 2018

UPDATE: This is an old thread, I started it in 2018 at the start of my journey. I am bumping it now to update with a few recent developments. Short recap, I have IgA nephropathy and Collapsing FSGS kidney diseases. The below post is the original one, updates throughout the thread...

I know, this is serious, most folks here aren't doctors and can't give actual medical advice. I'm already well in the middle of multiple doctor care. I'm just looking for other experiences with this sort of thing. I'm kinda scared out of my flippin' mind right now.

Long story short, I had some blood work done a while back and a few of my levels were off. Mainly my creatinine was 1.9 (normal range is 0.7 to 1.3) so they told me to stop taking ibuprofen and had me test again a few months later. I had it done again and it had gone up to 2.3 so they changed my blood pressure meds and referred me to a Nephrologist. This was all a couple weeks ago. He did a urine test and found high levels of blood and protein. He scheduled me for more blood work to check the things from before and to rule out random things like HIV and heppititis. He also had me do a 24 hour urine collection. He also told me to stop taking Omeprazole/Prilosec.

(One side thing I'll mention is that right before I realized anything was off, I actually noted to my wife how weird it was that my urine was very foamy in the toilet when I went. I didn't know at that time it meant anything having to do with this sort of thing. It happened quick too. Almost like one day it was completely normal then the next it was foamy.)

I did the urine collection starting this past Sunday and turned it in Monday morning and had my blood work done again as well. I got my results through email earlier and on this one my creatinine has dropped back down to 1.9 but one thing stood out so big that it really has me freaked out. Actually it was three things really...

-The ANA screen was positive.
- Protein Total, Qn, 24-Hr Urine 5899.7 H (normal is just 30-150)
-Protein, Urine 318.9 H (normal is less than 15)

Now I'm not an expert in any of this stuff, but that sounds like it's off the freakin' charts to me. I can't even find anything online about it being that high. I know you shouldn't look this studd up on your own, but I can't help it. Can any of you offer me any words of advice at all? I already have another appointment scheduled with the Nephrologist next Monday. I'm just having a hard time sitting here tonight not knowing anything more.

I know a lot of you hate me. We have different views on certain things. Even still, I do love you guys, all of you. One great thing about this board and GAF is that when push comes to shove we do help one another out in the end with support and everything like that. Thanks guys.

carlos · Oct 2, 2018

Can't say I know much about the subject, but I had a close family member who was diagnosed with kidney disease, and was warned by the doctor to eventually prepare for the worst. He changed his diet, creatinine didn't get any worse, and lived for over 40 years, well into his nineties without any kidney problems.
Be strong no matter what the doctor says and best of luck to you

Downhome · Oct 3, 2018

Thanks man. Not sure what to expect. I'm prepared to do whatever is needed for diet and other changes. I've got quite a while to stick around for our little girl!

sfedai0 · Oct 3, 2018

By foamy do you mean like bubbles? Cause usually when I stand up to urinate, it creates some bubbles.

Downhome · Oct 3, 2018

sfedai0 said:
By foamy do you mean like bubbles? Cause usually when I stand up to urinate, it creates some bubbles.

Well, I guess you could call it bubbles as well, yeah. It looks like it has almost been mixed with a soap or something. I have learned that when you notice this on a more consistent basis that it's a good sign that you likely have protein in your urine and it needs to be checked out.

Rory · Oct 3, 2018

Downhome said:
Thanks man. Not sure what to expect. I'm prepared to do whatever is needed for diet and other changes. I've got quite a while to stick around for our little girl!

You still sound quite young. I wouldnt worry too much. Just wait for what your doctors say, try to reduce your painkiller take in as much as possible and adjust your diet accordingly. Young bodies have insane self repair/care powers.

Deleted member 46103 · Oct 3, 2018

There is a reason people say not to use the internet for medical reasons.

Stay off the internet (medical) and only listen to the doctor's until you are well into this.

The internet WILL make things worse than they are for you. I promise. Medical googling will make u less happy and give you anxiety that will just cause further health problems.

Trust me.

That Guy · Oct 3, 2018

Have you noticed any swelling? Any visible blood in your urine? Based on what you've said it sounds like you have something called nephrotic syndrome. It's a group of diseases which essentially cause kidney damage causing you to leak protein into your urine. Generally they do a small biopsy of your kidney and look at it under a microscope to see which actual disease you have. The prognosis can be excellent in certain types and generally it's treated by steroids but really it comes down to which type you have. So as ever, your regular doctor who is familiar with your case will know best.

Spawnsniper · Oct 3, 2018

I'm no doc, but I do work at a dialysis facility. From taking the courses foam in your urine can mean kidney disease but it can also mean many other things. Do u go a lot at night? Like does it wake you? From what I remember, before the kidneys go out, people urine a lot(mostly during night time) but when they actually have the disease it's really difficult for people to urine cause the fluid gets removed during dialysis(urea)

Anyway... I'd get more opinions but make sure that u tell them that kidney disease is your concern

H.Protagonist · Oct 3, 2018

Have they done an ultrasound yet? If there are cysts and it's PKD (Polycystic Kidney Disease), I can tell you a bit about what to expect. My family holds some kind of world record for having it.

Sikamikanico · Oct 3, 2018

I suffer from something called Henoch Schonlein Purpura, which has given me a few scares in the past.

As I understand it, the filters in my kidneys don't always do a great job, leading to water retention in my joints, and worse, every blood vessel in my legs bursting. It looks like I've been attacked with a red felt tip pen.

Haven't had an outbreak in years though. Just try to eat right and not drink any booze. I'll still get a few burst vessels any time my immune system is low, like after a cold or something.

But yeah, I had an attack at 21, was hospitalised and they thought it was kidney failure. At that young age, I was fucking terrified. Point is, it wasn't, and medical science is awesome. Just sit tight and see what's what before you overthink it too much.

WastemanLoso · Oct 3, 2018

Can you describe "pissing bubbles" because I may have at least that symptom, my father is diabetic so I'm thinking about getting checked soon anyway.

Shadow · Oct 3, 2018

I had pissing bubbles, but that was due to a urinary tract infection, which according to the doctor, was caused by where my Crohn's disease is, which was/is pushing on my bladder.

I get it here and there still when my Crohns is inflamed.

Yours sounds like it's something more serious tho.

Downhome · Oct 3, 2018

H.Protagonist said:
Have they done an ultrasound yet? If there are cysts and it's PKD (Polycystic Kidney Disease), I can tell you a bit about what to expect. My family holds some kind of world record for having it.

Totally forgot to mention that. Yeah, they did an ultrasound before I went to the kidney doctor. The results of that were completely normal, no noticeable issues at all.

That Guy said:
Have you noticed any swelling? Any visible blood in your urine? Based on what you've said it sounds like you have something called nephrotic syndrome. It's a group of diseases which essentially cause kidney damage causing you to leak protein into your urine. Generally they do a small biopsy of your kidney and look at it under a microscope to see which actual disease you have. The prognosis can be excellent in certain types and generally it's treated by steroids but really it comes down to which type you have. So as ever, your regular doctor who is familiar with your case will know best.

Nope, haven't had any swelling or any of that, no visible blood in urine. They did find quite a bit of microscopic blood cells in the urine test though.

Rory said:
You still sound quite young. I wouldnt worry too much. Just wait for what your doctors say, try to reduce your painkiller take in as much as possible and adjust your diet accordingly. Young bodies have insane self repair/care powers.

I'm not that young, certainly not like a lot of you. I just turned 38 this year, but all the doctors say I'm way too young to be having these issues right now. They said they normally see what I have in much older people. Even the lady that did the ultrasound thought it was weird I was even needing to have that done. Those reactions don't make me feel any better, haha.

Spawnsniper said:
I'm no doc, but I do work at a dialysis facility. From taking the courses foam in your urine can mean kidney disease but it can also mean many other things. Do u go a lot at night? Like does it wake you? From what I remember, before the kidneys go out, people urine a lot(mostly during night time) but when they actually have the disease it's really difficult for people to urine cause the fluid gets removed during dialysis(urea)

Anyway... I'd get more opinions but make sure that u tell them that kidney disease is your concern

No, I never wake up in the middle of the night to use the restroom, I never have really. I have some stomach issues and over the years that has made me get up before but that's it. Never to pee. Now I have been needing to go more first thing in the morning lately, and it has been the cause of me waking up in the morning maybe a few minutes earlier, but nothing major. Back in May I started drinking a lot more water though, they said to do that after the first test to see if that would help flush me out, so I attribute even that to just drinking a lot more water out of the blue.

Sikamikanico said:
I suffer from something called Henoch Schonlein Purpura, which has given me a few scares in the past.

As I understand it, the filters in my kidneys don't always do a great job, leading to water retention in my joints, and worse, every blood vessel in my legs bursting. It looks like I've been attacked with a red felt tip pen.

Haven't had an outbreak in years though. Just try to eat right and not drink any booze. I'll still get a few burst vessels any time my immune system is low, like after a cold or something.

But yeah, I had an attack at 21, was hospitalised and they thought it was kidney failure. At that young age, I was fucking terrified. Point is, it wasn't, and medical science is awesome. Just sit tight and see what's what before you overthink it too much.

Sorry to hear all that. Yeah, thanks, all I can do is really wait and see. Still driving me crazy though.

WastemanLoso said:
Can you describe "pissing bubbles" because I may have at least that symptom, my father is diabetic so I'm thinking about getting checked soon anyway.

I think it can be a sign of that also. Multiple things can cause it, most aren't good either way. The kidney issue is usually if it starts and continues over a period of time and doesn't go away I believe. For many, it's the first sign that something isn't right. Go to Google Images and type in foamy urine and you will see what I mean.

The weird part is that I feel way more tired and fatigued lately, and I have more back pain. I'm so confused if that's actual symptoms or my mind and body is playing tricks on me now knowing that SOMETHING is going on. I'm having a hard time telling the difference. Does that sound crazy?

CopperPuppy · Oct 3, 2018

When you say foamy, do you mean frothy like a head of beer that doesn't go away when you flush? Or just bubbles that typically dissipate by the time you flush? Because the latter can be caused by a variety of things.

Deleted member 9971 · Oct 3, 2018

My dad had kidney failure 2 years ago almost foubd him laying dead on the couch if i came one day later he would have died.

The freakibg gyropractor assistent said it was freakibg bothing so i called my mom and demanded she came and check thhings and we brought him to the doctor and then to the hospital.

He was born with lesser functioning kidneys and they degraded over time so in his mid forties they gave up.

Hes now waiting for a new one and doeant want mine or my sisters cuz hes afraid we have lesser good kidneys too so he does not wanna risk it i tested myself and luckily mine are fine.

Its qhite hard to see him tired all day cuz of the 3 times 6 hours dialyses a week.

So hopefully he gets a donor kidney soon.
It's still ibsane to think about if i came one day later he would have died.

Downhome · Oct 4, 2018

Ok, now I'm freakin' out even more so.

I went to the doctor on the 19th and took the papers and went home. My mom is at our house taking care of our daughter and she called me just now all upset saying she saw my papers (I leave them on the counter, I don't care if she sees that stuff) and she asked why I didn't tell her what they said. I told her they didn't really say anything. She then pointed out that on that visit under diagnosis/current medical issues it now says "Stage 3 Chronic Kidney Disease". I told her they certainly didn't verbalize that to me or mention it at all. I go online to the MyChart thing our medical system here uses and sure enough it's listed on my account. I'm trying to call now to find out what in the world is going on.

Downhome · Oct 12, 2018

I went to the kidney doctor again of Monday of this week. He scheduled a kidney biopsy for Wednesday of next week. I guess I'll know for sure what is going on once I get the results from that. Ugh.

Nacho Papi · Oct 12, 2018

Sorry to hear Downhome, wishing you the best. Try not to fuel your worry/anxiety needlessly.

_Karooo · Oct 12, 2018

Biopsy will tell what's wrong.

carlsojo · Oct 12, 2018

Good luck man. The biopsy will hopefully give you some answers.

Downhome · Oct 26, 2018

Well, it's official.

Had the biopsy last Wednesday, it sucked. I bled way more than normal for the procedure. They got it stopped, then I bled internally and had around 3" of swelling around the kidney. I ended up having to stay two nights in the hospital because of that, my blood pressure going very high, and then because my blood was so low. Was told to stay out of work until after my followup appointment which was yesterday, because of the complications and restrictions I was placed on. I returned to work today.

Yesterday at my kidney doctor he told me that my biopsy revealed that the disease causing me to be in stage 3 chronic kidney disease is IgA nephropathy (Berger's Disease), an autoimmune disease. It is managed by a change in diet and different blood pressure meds and a combination of other drugs that I will find out about once the doctor consults more with those that received the biopsy sample.

I also had some more blood work yesterday. That, unfortunately, showed that things are continuing to get worse. My creatinine number is now 2.5 and my eGFR is now 30.9. At the beginning of this month the eGFR was 42. Dropping that low, especially that fast, is not good, as it measures overal kidney function. Stage 4 is considered between 15-30.

My doctor is great and he says we are gonna figure everything out, out me on the right combination of meds, and try to slow this thing way down. I'm willing to do anything I need to, including changing my diet in whatever ways necessary.

I'm not gonna lie. I'm pretty freaked out and terrified right now and dread blood draws since every time it has just been worse than the time before. All I keep thinking about is my wife and our daughter, and how I need to do all that I can to get healthy so I can make sure I'm around for them both for many, many more years to come. I thank God I just happened to find out about this now before it could get even worse than it already is. A lot of folks are unlikely and do not find out before it's way more advanced. I surely thank God for that. It is what it is, and I'll do what I've gotta do.

FloatOn · Oct 26, 2018

Downhome said:
Well, it's official.

Had the biopsy last Wednesday, it sucked. I bled way more than normal for the procedure. They got it stopped, then I bled internally and had around 3" of swelling around the kidney. I ended up having to stay two nights in the hospital because of that, my blood pressure going very high, and then because my blood was so low. Was told to stay out of work until after my followup appointment which was yesterday, because of the complications and restrictions I was placed on. I returned to work today.

Yesterday at my kidney doctor he told me that my biopsy revealed that the disease causing me to be in stage 3 chronic kidney disease is IgA nephropathy (Berger's Disease), an autoimmune disease. It is managed by a change in diet and different blood pressure meds and a combination of other drugs that I will find out about once the doctor consults more with those that received the biopsy sample.

I also had some more blood work yesterday. That, unfortunately, showed that things are continuing to get worse. My creatinine number is now 2.5 and my eGFR is now 30.9. At the beginning of this month the eGFR was 42. Dropping that low, especially that fast, is not good, as it measures overal kidney function. Stage 4 is considered between 15-30.

My doctor is great and he says we are gonna figure everything out, out me on the right combination of meds, and try to slow this thing way down. I'm willing to do anything I need to, including changing my diet in whatever ways necessary.

I'm not gonna lie. I'm pretty freaked out and terrified right now and dread blood draws since every time it has just been worse than the time before. All I keep thinking about is my wife and our daughter, and how I need to do all that I can to get healthy so I can make sure I'm around for them both for many, many more years to come. I thank God I just happened to find out about this now before it could get even worse than it already is. A lot of folks are unlikely and do not find out before it's way more advanced. I surely thank God for that. It is what it is, and I'll do what I've gotta do.

Really sorry to hear this. I actually have IgA nephropathy. My kidney's failed 3 years ago and I have been waiting on transplant since then.

It's a hard road but it's completely manageable. If your kidney's do end up failing I would look into overnight peritoneal dialysis vs hemo-dialysis. It allows you to get the treatment you need while you sleep so your life is still somewhat normal.

Any questions you may have feel free to shoot me a message or we can talk about it here. Best of luck.

Downhome · Oct 26, 2018

FloatOn said:
Really sorry to hear this. I actually have IgA nephropathy. My kidney's failed 3 years ago and I have been waiting on transplant since then.

It's a hard road but it's completely manageable. If your kidney's do end up failing I would look into overnight peritoneal dialysis vs hemo-dialysis. It allows you to get the treatment you need while you sleep so your life is still somewhat normal.

Any questions you may have feel free to shoot me a message or we can talk about it here. Best of luck.

Thanks, I would love to speak with you about it sometime. Do you mind my asking your age and when you were first diagnosed, and what your early symptoms were?

This is a complete shock to me. I'm 38 years old and I have never really had anything wrong with me, certainly never had to be in the hospital before. The only thing I can think of is that over the last couple years I started getting more fatigued quicker, but I chalked it up to my crazy work schedule. It's not consistent week to week, one week early, one week later, randomly a few nights on 3rd shift, just all over the place. Then earlier this year, a few months ago, I started seeing my urine be foamy in the toilet. I even mentioned it to my wife just because I thought it was wacky. Other than that, no real symptoms.

FloatOn · Oct 26, 2018

Downhome said:
Thanks, I would love to speak with you about it sometime. Do you mind my asking your age and when you were first diagnosed, and what your early symptoms were?

This is a complete shock to me. I'm 38 years old and I have never really had anything wrong with me, certainly never had to be in the hospital before. The only thing I can think of is that over the last couple years I started getting more fatigued quicker, but I chalked it up to my crazy work schedule. It's not consistent week to week, one week early, one week later, randomly a few nights on 3rd shift, just all over the place. Then earlier this year, a few months ago, I started seeing my urine be foamy in the toilet. I even mentioned it to my wife just because I thought it was wacky. Other than that, no real symptoms.

I'm 35. So it all went down when I was 32. Came as a shock to me too. I had always been very healthy and to my knowledge this isn't something that ran in my family.

I just started to feel really sick one week and I thought I'd be able to shake it but it didn't get any better after a week and then the worst pain I ever felt in my back started when I was in class one night. Ended up in the ER and that's when they discovered it all.

Spawnsniper · Oct 26, 2018

Damn.. sucks. I also agree getting home hemodialysis done. You have to qualify but from hearing from my home nurses supposedly is not so hard. You'll still need to go to a facility for a while to get trained though.

Its totally manageable, even if u do in center, most places open super early(very busy places like vegas its 24hr in center) so depending on location u can set that up.

Znazzy · Oct 26, 2018

I'm very sorry to hear about your diagnosis OP, but I'm glad that it's managable! I've been dealing with my own health issues recently, and I've constantly been told I'm too young to have whatever it is I think is going on (I'm 26). But the stress and anxiety of continuously thinking something is wrong coupled with googling symptoms (which I know I shouldn't do) has brought on such extreme anxiety and stress that I ended up getting shingles. I'm glad you finally have answers and you're getting the medical support you need.

Linkura · Oct 26, 2018

So sorry man. :(

Jakke_Koala · Oct 26, 2018

I've had kidney stones twices. It hurts like hell. You have constant pain and constantly the feeling hou need to pee or take a dump. When you try, nothing comes out.
Didn't have foamy pee though.

Really hope hou don't have anything serious.

On the bright side, when hou go to the e.r. with kidney problems, you can go first (at least in my country). And they give you as many painkillers as you like.
Downside is it really f**king hurts

Deleted member 9241 · Oct 26, 2018

It eventually killed my brother at the age of 39. He had many comorbidities though. He was a noncompliant type 1 diabetic. He went downhill fast the last 2 years. He was on hemodialysis and was often noncompliant with that as well. He was self catheterizing and impotent at age 35 due to his kidney issues.

Let my brother be a lesson to you to follow through on your treatments and take your health very, very seriously. If you do as instructed, you can live a long life with a few minor day to day adjustments.

Downhome · Oct 26, 2018

SillyEskimo said:
It eventually killed my brother at the age of 39. He had many comorbidities though. He was a noncompliant type 1 diabetic. He went downhill fast the last 2 years. He was on hemodialysis and was often noncompliant with that as well. He was self catheterizing and impotent at age 35 due to his kidney issues.

Let my brother be a lesson to you to follow through on your treatments and take your health very, very seriously. If you do as instructed, you can live a long life with a few minor day to day adjustments.

Man, that sucks, I'm so sorry to hear that about your brother. Why was he so noncompliant? Just thought he was young and bulletproof like so many for various other reasons?

Yeah, I'm all in on whatever I need to do for sure.

Deleted member 9241 · Oct 26, 2018

Downhome said:
Man, that sucks, I'm so sorry to hear that about your brother. Why was he so noncompliant? Just thought he was young and bulletproof like so many for various other reasons?

Yeah, I'm all in on whatever I need to do for sure.

He was one of those types of people that just didn't give a fuck about anything. He was happy to sit in filth, no job, and chain smoke and play video games 24/7. He just never cared. When he was 25 I had a very serious talk with my mother about the fact he would never live to see 40. We talked about it from time to time and I would like to think the very serious discussions about my brother helped to somewhat soften the blow for my mother when he eventually did die.

You are already leagues ahead of my brother though, because you care. Chin up and push through dude. It sounds like you got it early enough if you're still stage III.

LiK · Oct 26, 2018

My dad is going through the exact same thing right now. If his kidneys continue to do worse, he's gonna be using a dialysis machine or needs a kidney transplant. It's been stressful for him and our family this year. I don't wanna share too many details but I understand exactly what you're going through right now.

CyrilFiggis · Oct 26, 2018

I am sorry to hear this, but be thankful that it got diagnosed early and can be treated with diet and medication. My mother was recently diagnosed with end stage kidney failure and is on dialysis 3x a week. She constantly talks about is how much she hates it, and given her other health issues she isn't a candidate for transplant. Please stick to your regimen so that you can avoid this.

HenrySwanson · Oct 26, 2018

Sorry about the diagnosis.

Concerning diet I found this on uptodate (a website used by clinicians and med students)

A low-antigen diet consists of avoiding gluten, dairy products, eggs, and most meats [153]. The rationale for this regimen is that dietary macromolecules may be responsible for activating the mucosal IgA system. When given to 21 consecutive patients with IgA nephropathy, protein excretion was markedly reduced or fell into the normal range in 11 of the 12 patients whose baseline rate was more than 1 g/day. In addition, repeat renal biopsy showed significant reductions in mesangial IgA and complement deposition and mesangial cellularity.

The benefits in the above study have not been confirmed, and a report using a gluten-free diet alone for several years did not demonstrate improvement in either proteinuria or renal function despite a reduction in the level of circulating IgA-containing immune complexes154]

153 reference is: https://www.ncbi.nlm.nih.gov/pubmed?term=8302454
154 reference is: https://www.ncbi.nlm.nih.gov/pubmed?term=2311308

Here is a good leaflet (you may have better from your team):

https://www.ouh.nhs.uk/patient-guide/leaflets/files/4792Pnephropathy.pdf

Of particular interest in the above is the role of fish oil. Here is one study about it:

https://www.ncbi.nlm.nih.gov/pubmed/15156528

Good luck with your case and let us know what your nephrologist decides is the best course of action after your next blood work. I know it sounds scary with the lowering eGFR but you've got to stay positive and fight as much as you can.

ahdurian · Oct 26, 2018

I'm on dialysis right now. 10 years now. Ask me what you want and I'll answer if I ca help

Downhome · Nov 12, 2018

Thanks or the replies guys. I'll absolutely keep you guys in mind offering to speak to me privately. It truly means a lot to me.

This is all happening pretty fast and I'm pretty freaked out right now.

After my biopsy they sent my sample to UNC in Chapel Hill, NC and they are the ones that gave my kidney doctor the final results and everything. My doctor ended up telling me that in addition to the IGA N, I also have a second kidney disease called Collapsing FSGS. I decided to research "Collapsing FSGS" on my own and it brought me to this page right from UNC in Chapel Hill.

https://unckidneycenter.org/kidneyh...-KVgdBiy82xALyHxl0qjozd_eKIFFXaiOIwX1gvgydiBQ

It states about it: "The collapsing variant is considered the most rapidly progressive form of FSGS. It does not typically respond to therapy. The scarring quickly affects the entire filter, causing it to collapse. Most patients that are diagnosed with the Collapsing variant will require dialysis or a kidney transplant within one to two years despite treatment. This variant was previously thought only to effect people with HIV. It is now found in increasing numbers of HIV-negative patients. Collapsing FSGShas also been associated certain drugs, such as pamidronate."

My doctor certainly didn't speak in such dire terms, although he did mention how it is usually seen in HIV patients (I was negative on that, for what it's worth). Is this all true? That I will likely need to go on dialysis or have a transplant within one or two years? My wife and I both left almost joking that we got a feeling he was trying to baby us into this whole thing, like not telling us everything on his mind, but it was just a joke really we had, just based on how he was acting. I have no clue what to think now. Can anyone here calm me down or is this pretty freakin' accurate?

I can't find much online that makes much sense to me anywhere, and everything I do read (and even my doctor told me the same thing), says that Collapsing FSGS is found almost exclusively in HIV positive patients. I was tested for that and was negative, but still. It seems they are only recently finding that it an happen in other people as well. Not sure what to think.

I had a blood draw again today and visit with my doctor once again tomorrow. I think I'm gonna mention what I found on the UNC website. He certainly didn't mention anything like that to me.

Mariolee · Nov 12, 2018

I don't know what else to say except that I hope it all works out. Although things may sound dire, it looks like you have a great support system with your wife and all of us here on ERA are here to support you as well. Keep us posted on what your doc says tomorrow.

Downhome · Nov 13, 2018

Mariolee said:
I don't know what else to say except that I hope it all works out. Although things may sound dire, it looks like you have a great support system with your wife and all of us here on ERA are here to support you as well. Keep us posted on what your doc says tomorrow.

Thanks a ton, and will do.

The doctor also put me on the devil's pill, prednisone. I've only been on it for a week and it is already messing with me. Jittery, anxious, emotional. My eyes are super heavy but at the same time I feel like my skeleton wants to jump out of my skin and run around the planet.

jb1234 · Nov 13, 2018

Yeah, prednisone sucks. It made me balloon up. I'm wishing you the best, man.

_Karooo · Nov 13, 2018

The problem with dialysis is the monthly cost. You can live life mostly normally. You have to be careful with your diet though.

JeTmAn · Nov 13, 2018

From what I can tell dialysis blooooooows but it's doable and you get to live. I know a lady at my church who has been waiting for a transplant for a while and might get one soon. I will pray for good results and peace with your continuing health journey, Downhome.

Minilla · Nov 13, 2018

I have CKD. In Japan they treated me with steroids which completely reversed my condition . Doctor said they only do prevent medicine in states and UK, so not sure how widespread the treatment is, but my test results (blood in urine) have been standard for a long time now .

Downhome · Nov 13, 2018

Thanks!

Just got back from the doctor, ugh, nothing but bad news ever.

Last week when he put me on prednisone I thought it was one 20mg pill every other day. Today he pointed out I made a mistake and it was actually 120mg every other day, so I should have been taking six pills at a time instead of just one. Before he pointed that out he asked how I was doing on it and I told him I was a bit jittery, anxious and my blood sugar was up just a little. Now he is worried what it will do to me with taking six since just one already did that to me. He told me to go ahead and take it as stated but to monitor how it makes me feel.

He is also now worried that I will be one of the ones where it triggers full blown diabetes. He told me to start on a diabetic diet as well, in addition to the low sodium, low red meat diet he already told me to start on. I have no clue what to eat anymore. I have no problem with a diet, but it feels like everything I even remotely enjoy is quickly being taken away from me.

I also called him out on what I saw on the UNC website. He said he was in fact trying to ease me into everything because he wants his patients to remain optimistic. He said that was correct what I read, that if the prednisone doesn't work for me in this six month period it would be likely it would progress to where I need dialysis or a kidney transplant in 1-2 years. He said that right now there is a 50/50 shot that it will happen or not.

I go back to get a blood draw and visit with him again in two more weeks.

Jesse_and_the_rippers · Nov 13, 2018

Sorry to hear the update is bad news :-( Fingers are crossed for you.

FloatOn · Nov 13, 2018

I'm not sure of the timeline but artificial implantable kidneys are coming along.

https://www.nibib.nih.gov/news-even...t-advances-thanks-collaboration-nibib-quantum

Maybe in 1-2 years this could be an option. Or maybe I'm just naive.

Downhome · Nov 13, 2018

Oh yeah, I've heard of those type of things. It's pretty amazing technology and I do feel that it will be something coming sooner rather than later. At least I hope so.

Mayyhem · Nov 13, 2018

Very sorry to hear this man. Always hits me hard when I hear about otherwise healthy people suddenly being struck by some health condition that flips everything upside down.

You seem to be on the ball with this and also have a very supportive family that cares about you. Keep fighting for yourself and for them and I am positive you will come out just fine. I know it is all probably happening so fast that it is hard to sit back and process it all, and when you do I'm sure it might hit you like an emotional brick wall. However, do your best to just stay busy and stay on top of things, thinking optimistically, as there is nothing you can really do about the fact that this has happened - all you can do is impact how it effects you going forward.

Deadly Cyclone · Nov 13, 2018

OP my wife said this:

"My friend growing up lived on like 30 percent kidney function for a long time. Then his dad donated a kidney and he's totally fine. Kidney disease isn't the end all. "

Just follow your doc's orders and you'll be fine.

carlsojo · Nov 13, 2018

Downhome said:
Thanks!

Just got back from the doctor, ugh, nothing but bad news ever.

Last week when he put me on prednisone I thought it was one 20mg pill every other day. Today he pointed out I made a mistake and it was actually 120mg every other day, so I should have been taking six pills at a time instead of just one. Before he pointed that out he asked how I was doing on it and I told him I was a bit jittery, anxious and my blood sugar was up just a little. Now he is worried what it will do to me with taking six since just one already did that to me. He told me to go ahead and take it as stated but to monitor how it makes me feel.

He is also now worried that I will be one of the ones where it triggers full blown diabetes. He told me to start on a diabetic diet as well, in addition to the low sodium, low red meat diet he already told me to start on. I have no clue what to eat anymore. I have no problem with a diet, but it feels like everything I even remotely enjoy is quickly being taken away from me.

I also called him out on what I saw on the UNC website. He said he was in fact trying to ease me into everything because he wants his patients to remain optimistic. He said that was correct what I read, that if the prednisone doesn't work for me in this six month period it would be likely it would progress to where I need dialysis or a kidney transplant in 1-2 years. He said that right now there is a 50/50 shot that it will happen or not.

I go back to get a blood draw and visit with him again in two more weeks.

Good luck to you man.

I know it's difficult to make those diet changes, but it's worth taking the time to figure it out. There are lots of resources on low-carb/sodium/red meat diets. Do your research, work on meal-planning. It'll help keep your mind off the other stuff too.

My wife and my mom did the South Beach Diet when they had gestational diabetes and they liked it.

I have been diagnosed with two rare kidney diseases. Any advice?

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Very low key