Ask Me About Living with Multiple Myeloma Kidney

Sundry Chitchat
101

The day after I was finally off cancer treatment, an issue came up with my dialysis catheter. At dialysis the cuff was showing and I was asked if I pulled it. I said not that I know of. The nurse said it was ok, and we did the dialysis with no issues. My normal tech said this was the same issue that was brought up a few weeks earlier and was found to be ok. She didn’t put me on for the Saturday session, so she didn’t see if it was different than the time before.

I took a nap on Saturday afternoon and when I woke up, something didn’t feel right with the catheter like it moved in my sleep. From that point on, the catheter site had significant pain and tenderness, though it was less on Sunday and Monday than Saturday. I made the determination that I would go to the vascular access center first thing this morning, since they’d told me to walk in if I ever had an issue. I also wanted to avoid going to dialysis tomorrow and being told I needed the catheter replaced, losing the entire day and being 4 days off dialysis.

When I got in, apparently walking in is no longer how they want you to do it. They needed a referral from my dialysis clinic, which was closed on Sunday. They contacted them when I got done talking to the receptionist, and I’ve mostly been waiting since about 8:45 pacific time. I knew going to the dialysis clinic would be a waste of time based on previous experience, and there’s no way I’d take this issue to an ER. So waiting is the only game.

I got in to the back about a half hour ago, and as expected my catheter needs to be replaced. Because I’m a walk in, I have to wait til they can fit me in and I have to wait until they’re back from lunch lol.

Here’s hoping I make it through the minor surgery at whatever time that is.

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102

GL, and that sounds like such a typical patient in the ER for me. Glad you don’t have to go through that.

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103

Oh and another regarding your numbers.

It’s easy to look for patterns in that data, but it’s important to remember a lot of those numbers bounce around a lot and can be significantly influenced by other things you might not realize were going on but aren’t long term issues.

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104

I made it through the procedure and am hoping this will be the CVC that gets me successfully off dialysis without needing another. A fresh start after being officially off my cancer treatment…a new beginning.

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105

I guess I’ll give a little bit of an update, as I realized I haven’t given one since the treatment holiday began. My follow up is next Tuesday when I’ll get a clearer indication of how I’m doing.

I did finally get my most recent bloodwork on August 20. I’m not willing to say it was discouraging, but it was definitely not encouraging. The only true bright spot is my hemoglobin went up to 11, the highest it had been in a while. About a week later it was at 11.3 in dialysis. My most recent dialysis reading last Thursday was 10.9.

The biggest disappointment was related to my creatinine. It went from 6.4 to 6.87, which also dropped my kidney function to 9% from 10%. I was hoping for a continued downward trend but that does not appear to be happening. I also had a much higher than usual Blood Urea Nitrogen at my dialysis on Thursday. They did not measure creatinine, so I have no idea if it was higher but suspect it was. I usually have around a 25 BUN at the oncologist, though it tends to be higher at dialysis. The last three readings at dialysis were 29, 27, and this one of 34. That means urea, a waste product of the body breaking down protein, is getting into my blood. The kidneys should be getting rid of it, but dialysis is now doing the kidneys’ work.

The second disappointment is that most of my numbers are stable with what they were on treatment, which is to basically say bad. My immune system is still in shambles with very little upward movement in the last bloodwork. My oncologist said it would take a long time for my immune system to recover, though he didn’t give any indication of what a long time to him is and I didn’t ask.

My kappa light chains were on the very high side of normal. My lambda light chains continue to be normal, which was where the disease was predominant. These numbers looked almost identical to what they looked like during treatment. That, along with other numbers, suggests to me that the treatment still hasn’t left my body at least as of the last bloodwork.

My side effects neuropathy hasn’t subsided at all and some days are quite bad for my feet and knees with maybe a 6 pain level that I went through most of the weekend. It’s not bad enough for Acetaminophen, but it’s been hard to push it out of my mind with distractions from it.

My parathyroid hormone corrected after being taken off Vitamin D at dialysis. I have no idea of my Vitamin D level but know if I go longer than a month on it that my PTH level will crash. It’s all an insanely delicate balance that is almost never gotten right overall. My only out of whack dialysis numbers from the big bloodwork last week were the BUN which I said, and my phosphorus being slightly high going from 5.4 to 6 (5.5 is the high good range). I think I have 2 more weeks to go until my next oncologist bloodwork.

I’m also on high alert over a potential dialysis catheter situation. I may need to get it changed again soon, but I’m truly hoping not.

Right now, it’s feeling like I’m having a slight downward slide. We’ll see what the next bloodwork brings…

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106

Hopefully things improve. Sorry for things stalling out/backsliding.

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107

Apologies if this was discussed before- are you or will you ever be a transplant candidate? Idk- assume immune suppressant drugs might be contraindicated?

hang in there.

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108

Ugh. That really sucks. I keep hoping things turn around for you.

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109

I have to be in remission from cancer for 3 years, which would be middle of September of 2027. It will be a big deal if I make it that long, especially without a bone marrow stem cell transplant, which has never been my expectation since this began. I’m already well into overtime with the diagnosis and continuing need for dialysis, but no major slide yet. Just this small one that I hope is nothing.

The main hope right now is that I still get off dialysis successfully without the need for a transplant. The kidney doctor says to give it some time coming off the treatment, so if my kidneys turn around it may take 3 months or so from now. Again, there’s no visible damage on the kidneys and the light chains cleared way more quickly than for most people (99% after 28 days). I also have generally good health numbers overall related to dialysis. The main good prognosis for AKI is clearing those light chains very quickly. The problem is that my kidneys were being murdered by light chains to almost complete kidney failure and are probably too scared to wake up due to the trauma they faced at that time. There’s seemingly nothing preventing them from waking up, they just haven’t.

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110

You mentioned being uninterested in a stem cell transplant (I think, apologies if I’m misremembering). If someone waved a wand and there was a kidney, would you do it?

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It’s too early to think about but I don’t know honestly

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112

Gotta have my catheter replaced. Haven’t had today’s dialysis yet. Hoping I can get new catheter today, or this going to be a very bad weekend…

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113

Surgery is scheduled for 8:45 PT

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114

For a kidney transplant?

115

No, catheter replacement. Cuff is exposed.

116

Oh. That’ll be good.

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117

Sentences you don’t hear everyday! :flushed_face:

Hope everything does well.

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118

Out of surgery successfully and will have dialysis at 2:30 PT. It was done by my least favorite surgeon. :/

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119

I made it successfully through the dialysis session and it seemed to go very smoothly. So, not the worst day anymore…

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120

Good to hear

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