Is there anyone here dealing with Renal Failure?

[CraftyGal]

Feeling really stressed here and at a very low point right now. Could use someone to "talk" with.

[Warpy]

1. I was stage III a year ago

but my renal function has improved to "insufficiency" since then. It'll be back, of course, nothing sends it on the run for long.

I do keep to a renal diet of low protein, low fat, low potassium with a few cheats here and there.

[DebJ]

6. Wow! You have no idea how your post just brightened my day!

(I just found this forum for the first time, though I've hung around since
2003.)


Someone got better! That gives me some hope.

My husband just got a diagnosis of Stage III in February. We've dropped
his weight substantially, and at first his numbers stabilized, then got worse.

He was on Metraprolol and we just dropped that doseage by 75%,, and his numbers got a wee
bit better in just four days. We can't wait for the next blood tests.

[CraftyGal]

2. Okay here is some background on my situation...

Back in late 1983 early 1984, I was working as a Nanny and living with my boyfriend. "Paul" was very loving and patient, one day I thought I hurt my back so off to the dr I went. Was put on muscle relaxants and T3's. At one point I had a reaction and collapsed at my second job and was rushed to the ER. I was put on a different muscle relaxant. Paul was worried as he helped with heat and ice and drugs weren't working at all. He finally convinced me after not getting relief for three months to see his doctor. She did the jab to the kidney and almost punched. She said you have a bad kidney infection. Ever since I have been on the kidney infection roller coaster.

I have had the following surgeries:

* ureters that are between the kidney and bladder, replaced with pigs ureters, both sides twice
* ureters that are between the kidney and bladder, replaced with plastic ureters, both sides twice
all 4 surgeries required blood transfusions, this was in 1985-1987
* urethra enlarged so I could be better
* urethra was too enlarged so 2 stitches to close it up (both in 1991-92)
* Nephrectomy of the right Kidney in 1996 (almost died due to a punctured lung) due to scarring
* appendectomy and ovarian cyst removal in 1997. Both ruptured while I was on the OR table.
* Catheter put in for Peritoneal Dialysis (Sept 2010)

I was at 75% kidney function since the nephrectomy in 1996 that is until things went wonky in 2007 for many reasons. My GP at the time put me Effexor for depression (been medicating it off and on for years by this time). I am always okay if you put me on a low dose. I was dealing with a lot of issues at the time. Custody issues with my son and my birth mother (sigh), my dream job was ending (I worked at Lewiscraft...yes it was minimum wage but the treated the employees very well.) and I was getting married to TrogL (yes it a happy occasion but for someone dealing with depression...not so good with all the changes) oh and dealing with an alcohol addiction.

So he upped my meds to 2 pills, after that my blood pressure went wacky, I had weight gain and my kidney wasn't functioning well. So off to the nepherologist who mucked around with meds for the blood pressure as my kidney was not handling it all. Also during this time my GP was monitoring infections by September of 2008 I had 10 infections in a 9 month period, so IBS-D developed. Most days it is managed but there are days when I want to scream as I cannot always figure out what will bring on an episode.

Also on 2008 I was in a stupid car accident. The driver hadn't checked to see if I was fully in the backseat, so he started to drive off. Thankfully witness stopped him or I could have been seriously hurt! I hurt my right shoulder, in fact it froze on me, still do not know why it hurts as much as it does. The GP put me on some heavy narcotics (which you have to careful with because of the alcoholism). They weren't doing anything so I switched to Advil which I am not supposed to take as a renal patient. So by 2010 I all of a sudden had only 14% kidney function.

So now I attend the Renal Insufficiency Clinic near where we live. It had been going really smooth until I got pneumonia a few weeks back. I was in bed for 3 whole weeks. I was so tired that I was sleeping 16 hrs a day or more. The problem with that is that my function went down to 8%, so I got a call from the RIC and was informed I would probably start dialysis sooner rather than later.

So I talked to TrogL who came with me to my appointment. We all agreed dialysis is probably the best way to go now and I should hear from the PD Clinic within 2 weeks. So I got a call on Wednesday from my nurse who informed me it would be 4-6 weeks and that it might not even work due to all the scarring from the previous surgeries. That is where my frustration lies. why I feel at my lowest point, sometimes it is hard to see the positive when so much is going on. My quality of life has tanked. I can't even take my dogs for their normal walk I used to take them on. I get tired, then I have to call TrogL to come and get me.

Craftygal

[REP]

3. I'm just Stage II/III from FSGS but due to my disease/blood type I've been studying up...

And yeah, don't take NSAIDs no matter what. I'm scheduled for PRP for my elbow because I've reached my lifetime limit on cortisone injections, but as much as I'd like a handful of Alleve ... No. I tried Clinoril a few years ago, which I used to be able to take safely, and the edema was scary bad. I'm already taking 240mg Lasix/day and I still couldn't get my shoes on.

Anyway. I've had a shit ton of infections, stones, plus the FSGS so I have scarring bad enough to be seen on sonogram so again, being B- with a disease with a ... poor ...prognosis, I've started checking my options. There's the Kamen home dialysis machine, which is hemo and allows daily dialysis, which is best for everything (and no water limit). If that's not an option and you'd still prefer more frequent dialysis, there's peritoneal dialysis which can be done at night or continuously through the day.

I'm sorry I can't be much more use than that. While I'm not at the same stage, I understand the scary and weirdness of it, though I just know the scary and weird I deal with and fear. On the other hand, it's entirely possible you may regain some function - after my last round trying Clinoril, things looked pretty grim but my function did recover from full-on Stage III to borderline II/III, where I'd been for a while.

Good luck and best wishes. And yeah, it sucks. But I bet it'll get at least a little better

[NightWatcher]

4. I hope I don't get to that point. I've got SLE lupus and lupus nephritis

but thankfully I'm at Stage 1 and treating with steroids, lisinopril, and plaquenil. I'm so scared of renal failure and the disease's progression that I'm being a good boy when it comes to what goes in my body now. I was a HUGE beer nerd, but that went out the window after my diagnosis in late March. So now I sit and research my fate as I wait for a decision on disability. They tell me I can't work (used to work on ships at sea, now that's out of the question).

I always thought your body was supposed to crap out on you sometime after 70, not halfway there. And at that, it would be passively giving out, not actively attacking itself from the inside out.

Good luck. We all need it to survive.

[geardaddy]

5. Renal trx 19 years ago

ESRD caused by FSGS.

[CraftyGal]

7. So I started the PD and I am not doing well on it....

so frustrated and depressed. Found out I am allergic to the solution that was actually helping! So had to go off. We tried the other solutions but I am not getting the same results. Now what?

[efilon]

8. Stage III Chronic Renal Insufficiency

Also Type 2 Diabetes but that's not what caused the kidney disease. FMD in both renal arteries. had renal angioplasties 3 times. Seems that arteries are finally cleared but the lack of blood flow over the years played havoc with my kidneys. Nephrologist tells me I'm a long way from dialysis which makes me feel better. I about fell over when he talked about my kidney function being at 30%. He reassured me I could stay at this level for years. I hope he is right.

[curlyred]

9. Going to the nephrologist on Wednesday

Very nervous. PKD in the family.

[seltzerwater]

10. Maybe "dealing with" isnt the right term,

But yeah, I've had a few Transplants... done some Dialysis...Lived to post about it on the interwebs.

Ask Away...