Hi, not sure if this is the right place to post (probably isn’t, I’m sorry) but I just learned this week that I have Stage 4 kidney disease (after having only mildly elevated creatinine for years) and I am going to see a nephrologist tommorrow. I’m just still kind of freaking out about all of this.
I should tell you guys, I’m on Cyclosporine-A, which is known to be extremely nephrotoxic. The problem is, I have no choice but to be on CyA. I can maybe try to lower the dose - that is what we are doing now - but I have to take it.
CyA hit my kidneys hard apparently. And my doctor - he should have monitored me every two weeks, it turns out, but I was his first patient ever on CyA and so he had no clue (but I didn’t know he was clueless) and had me doing labs only every 3 months. So who knows when my kidneys went belly-up in those 3 months???
So here I am, I have no idea if I have chronic kidney disease or if this is acute. Sometimes CyA causes acute, but it can also cause chronic. I guess hopefully the nephrologist tomorrow will have some ideas about what to do.
All I know is I got a call on Sunday, my creatinine was 3.3 (it had always been running about 1.3 before) and my doc was trying to play it cool but I could hear in his voice, he was worried. Plus, the doc never has you come in on a Sunday unless he is worried, you know? So…the test is repeated, this time it’s 3.0 Oh, and the BUN is over 40, but he never told me the exact amount. He claimed the GFR was 18.4 but I don’t know if he calculated correctly. He’s not a nephrologist after all.
So then he tells me to go home and drink a lot of water, that most likely this is only because I am dehydrated. (I think he’s in denial - I think he is really really freaked out and scared over all this, and he’s in denial, la-la land - I mean come on, 3.3 and 3.0 and it’s just because I’m dehydrated? I don’t THINK so…)
So I go home, looking stuff up on the internet, what I’m looking up scares me. And my husband is in denial too. He says he refuses to worry about anything until the doctor tells him something is wrong, and since Dr. T. (the doc who called me) is playing this off as, “oh, it’s really no big deal and you’re fine, but I think I’m going to send you to a nephrologist just for the hell of it…” So of course my husband is thinking this is reversible, I will be fine in a day or two, no problems. I know better. Well, I mean, there is a small chance it’s acute, but I don’t believe it is. I’m certainly not getting my hopes up.
Right now I’m pissed at my doc and my husband because they both seem to be in denial. At first I was thinking they were just trying to blow sunshine up my tailpipe, but I really do think, on second look, that they are in denial and neither one of them can handle this.
I keep telling my husband, trying to show him stuff - “you DO know that if this is chronic stage 4, that I’ll need dialysis soon - probably within a year, right?” And he just kind of pouts and says he’ll believe it when the doctor tells him that and not before.
This is hard enough without my doctor and my husband both deciding to lose their grip on reality.
I hope my Nephrologist tomorrow has a grip on reality, and I hope he makes it clear beyond any doubt how serious this is. Hubby is coming with me, and I want hubby to GET it. If he keeps acting like this, I swear I will go to dialysis and he’ll say, “oh, yeah, there’s that hobby club you go to three times a week…”
My doctor is repeating the kidney tests so many times I’m looking like a pincushion. I mean, he went from once in 3 months to once every day? Like I said, he’s freaking out.
I haven’t had many signs yet of kidney disease. I have been getting these weird little bruises all over, that is the only sign I can think of. And I’ve felt a bit more tired than usual lately. And if I don’t take the diuretic I’ve been on for a year for high blood pressure, I swell up like a balloon (incredible water retention thing) and my blood pressure shoots up by 30 points or so within 24 hours. (Oh, that’s another thing - my doc said, “go off the Hydrochlorothiazide, that’s why the reading is 3.3, you are just dehydrated.” Well, doc, I was on the HCTZ 3 months ago when I was tested then, and I tested fine at 1.3…sigh. I wish the doctor would get a grip on reality. I feel like I"m the only person in the room who SEES this and looks at it clearly. Everyone else is bonkers right now. Did you guys go through that when you were first diagnosed? Did people ever come around or were they still in denial?
I wrote some long e-mails to a nurse in-law of mine - a sister-in-law - and I wrote three or four, starting on Sunday when I was called in, told her about the creatinine levels and Stage 4 and cyclosporine-A being bad for the kidneys and all of that. Then another e-mail the next day when the test was repeated with the same results (more or less) the next day. Then another e-mail today. I finally wrote, after completing the last e-mail, “I can see I’m boring you with this, so I’ll shut up and go away now.” I mean, she always writes back, why would she all of a sudden ignore this? All I can think of is she thinks I am lying. That’s all that makes sense to me. And that makes me mad because obviously I am not lying.
Today she wrote, “I will have to go back and reread your e-mails to grasp the situation you are in. I guess I am in denial.” Well, I don’t know how it could be any clearer. My kidneys are mostly dead and I’m going to be on dialysis soon. Why is that so hard to comprehend? I think she just thinks I am making this all up, lying. Partly because Dave (hubby) has not told his parents or his brother (this nurse is married to hubby’s brother) yet or anyone because he’s still convinced that nothing is wrong. So the nurse sis-in-law is thinking, nothing is wrong because Dave hasn’t called us - so that means L. is lying about her kidneys…
So tomorrow I go and find out how long before dialysis. And with any luck, a ray of reality will smash its way into my husband’s head. Really I’m just irritated as all get out with him right now. I need him by my side right now, not in fairy tale land where the nephron fairy comes and gives me new kidneys!
Thanks for letting me rant. So I’m learning about hemodialysis. I have really crappy veins. They always blow. Takes them 2, 3, 4 blown veins before they find one that holds for an IV. They can’t tolerate even a drip IV, I have to use a gravity type of IV. So how on earth are my veins going to tolerate hemodialysis? Even if they do put in a shunt thingee? And if they put in a shunt thingee, does that mean I won’t feel the needle in the vein quite as much? I hate it when I donate blood, and they run the needle through my vein (almost every time they do this, because my vein collapses, then they pull it out, ram it in, pull it out, wiggle, ram it through, just about have marital relations with my vein for goodness sake,) and I hate hate hate the way that feels. I feel like I could handle all of this except that part. I do not want to feel that huge needle going through the other side of my vein. And I don’t want them constantly blowing my veins and having to jam that huge needle in my jugular or whatever. Or have them shrug after blowing every vein and say, “well, that didn’t work out well, I guess you have to die now, bye bye.”
This really sucks, doesn’t it? I’m not looking forward to dialysis and the sickness and the vomiting and the cramps and passing out and the dietary restrictions and the bones dissolving into dust. I do already have anemia so I have that down pat now. Most of all I’m not looking forward to tons of blown veins and the stupid huge needles.
Thanks for letting me vent.
I’ll probably be back whining again after my appointment with the Nephrologist tomorrow.