Ask Me About Living with Multiple Myeloma Kidney

Sundry Chitchat
41

We have no conflicts on this at all. We both believe any medical decisions we make are up to each of us individually, so we’re very much a team in that regard. She also has no problem with me being DNR. I told her if I ever have a heart attack (a real possibility of a complication) to just hold my hand on my way out if she’s there and she’s okay with that. I’m sure there are lots of people out there who would have conflicts on that but we’ve always been in synergy on stuff like this since we got together.

We were both in agreement about how the stem cell transplant consultation was going. She immediately didn’t like the doctor when she rattled off my diagnosis in a very cold manner that my oncologist hadn’t done to that point. I knew based on my kidney biopsy that I had a terrible diagnosis, but the transplant doctor decided she wanted me to have a college dissertation on exactly how bad it was. My oncologist had suggested I at least go and listen to her presentation even if I wasn’t eligible or it wasn’t for me. She took his referral as if ‘he sent you to me, he obviously wants this done’.

It was very offputting and they weren’t really particularly upfront about how hard a stem cell transplant is on both me and my caregiver. I’d found another transplant clinic’s guide for it online and it was extremely detailed. I’d also had the happenstance before that of a nurse that talked with me about my cancer on monthly phone calls had been a stem cell transplant nurse. Up to that point, I had no idea what a stem cell transplant really was and how intense it would be. She explained it to me very well, including how long I’d expect to be in the hospital (potentially 4 weeks was a big NOPE to me), which led me to the further research.

That’s a question for people around here to get your brains thinking. When I talked to my oncologist the day before my final consult for the stem cell transplant, I pretty much told him I didn’t want to do it but I wanted him to give me a realistic set of timelines about what to expect with no stem cell transplant vs. stem cell transplant. He told me if I got the stem cell transplant, my treatment would stay ahead of the disease for 50 months. He told me without it my treatment would stay ahead of the disease for 17 months.

The general expectation is that you lose a year to the stem cell transplant, because you practically need to be ‘the boy in the plastic bubble’ (one of the guides practically shouted ‘DO NOT EVER GO BAREFOOT!’) for that time before you can get any vaccinations. A stem cell transplant is literally wiping out your entire immune system and starting over with your own stem cells. It will not get rid of any underlying diseases and they will come back. It also might hurt my kidneys more than help them, and the doctor had never done a stem cell transplant on someone with dialysis. She even said, ‘you really want to get to me before the need for dialysis’, which was like thanks a lot because I needed dialysis 3 weeks before I got the diagnosis and before anyone even had any clue what was going on with me before my kidney biopsy results came in.

The goal of a stem cell transplant in multiple myeloma is to suppress it to its lowest possible level. For me, I already appear to be at close to that point, so I’m glad I didn’t do it. For anyone else, would roughly 21 months more time mean anything to you to the point you’d do anything you could to get that time no matter how hard it may be on you physically, mentally, and/or financially?

2 Likes
42

The 21 months more time would totally depend on how I was feeling physically and mentally as to what quality of life would those months offer.

43

That’s the rub. For me, I just look at that amount of time as nothing, because time moves so quickly for me. I certainly wouldn’t want to feel the way I do now for an extra 21 months while also being on dialysis. I also have the unique potential benefit of being a special case which means I may beat those odds anyway. I’m already ahead of expectation based on stuff I’ve read and don’t feel like I’m going downhill.

I’ve been on the long tail of bad outcomes for a lot of this, but when it came to treatment I think I’m on the long tail of good outcomes. As an example of a long tail bad outcome, the first kidney doctor I met in ICU told me he thought I wouldn’t need dialysis and that he thought this was reversible (they saw nothing on my ultrasound of my kidneys that was concerning). He was wrong about dialysis, and a year in it still hasn’t reversed (it still might). But again, I have negative minimal residual disease for Mutliple Myeloma Kidney, and that’s a very good outcome based on my diagnosis so far. I should be checked out by now based on everything else inside my diagnosis but I’m not.

1 Like
44

So 21 months is not incentivizing you for additional suffering but you would be fine with it if it were natural outcome of current treatment.

How much time would it take for you to take on a greater burden or is that number zero.

45

Yes, pretty much.

The number is zero for me. I don’t know if I was told that I would have 10 more years if they were good years under the idea of a treatment that’s not a natural course if I’d change my mind but that’s not something that’s been said. I think having to live a long time in misery is not better than it just being bad for a few years and then that’s that (most of what I’ve read says people under my diagnosis are fortunate to live 10-12 months and I’m in month 13 now).

It’s probably easier to say that knowing I’m not living anything resembling a normal life right now than it would be if I was. Getting off dialysis successfully really is the key to me seeing where the rest of my life can go and how much suffering is in it vs. living.

3 Likes
46

Can you elaborate on the impact of dialysis? You have talked about it a lot but what do you dislike about it the most? How it makes you feel after? The process? Something else.

47

It’s mainly that I can’t live freely. Three times a week I’m up at 4am for 3.5 hours of dialysis if it goes smoothly. I’m usually not home until about 10am, so I’ve put in almost a full day on those days before any days I have work.

Because of my CVC, I can’t really exercise or do anything like a golf swing (the danger of pulling it out is very real). A few weeks ago, I needed to change the battery on a smoke detector and found out I have bad range of motion in my right arm for the difficult smoke detectors on an 8.5 foot ceiling. I can no longer do it on a simple step ladder, which was very disappointing. That contributes to the bad feeling that I can’t do anything around the house. I can’t travel easily either, so it feels like I’m basically tethered to the machine. All of the effects from the treatment are manageable and no big deal.

4 Likes
48

Rough. I’m assuming you have a tunneled catheter? Those are usually sewn in pretty damn good but I read you pulled one out? Pretty wild.

Have they considered a fistula for you?

49

Not sure what to add, but thank you for sharing your story.

1 Like
50

Yes, I now have a tunneled CVC.

In the hospital, while I was on dialysis there, they used a non-tunneled catheter in my neck. On the Sunday before I was released, they did a tunneled catheter in the right side of my chest. At first, I was slightly resistant to going on dialysis because of what the initial doctor said about thinking I wouldn’t need dialysis and that it appeared to be reversible. The reason the second doctor wanted me on dialysis was because he was concerned about a bleed risk in my kidney biopsy and wanted me to have ‘cleaner’ blood for a transfusion, if necessary. The reason I became open to it was because my first Saturday night in the hospital was extremely bad and I thought I wasn’t going to get better. They couldn’t get my creatinine down from 22 no matter what they did, and I hated feeling that way. My first hour and a half dialysis brought my creatinine down to 13, and the second one and a half hour session brought it down to 10. After that one, water tasted like water again instead of dirt. Most other stuff still tasted awful, but it was miles better than what I’d experienced for the previous 7 days.

I had that catheter in from May 19 until July 4, when I pulled it out accidentally. I’m not really sure what caused it but I think tape that was used to hold it down got caught on the inside of my shirt. When I lifted my arms to take a bowl out of the microwave, it must have pulled it. I felt something wet on my shirt and looked at it and saw some blood. This was around 6pm on July 4, a bad scene. We rushed to my dialysis clinic to see what was going on and when my nurse looked at it, he said, ‘oh no, you need to go to the ER, that’s not where that’s supposed to be’. I went to a different hospital than the one I was admitted at and it was pretty slow. They did a chest scan and found the catheter was hanging by a thread, so they removed it.

Thankfully, I had already had my Thursday dialysis session when that happened. I wasn’t able to get in for surgery at the vascular access center until the Saturday morning (missing my dialysis session, that got rescheduled for the afternoon). The surgery appeared to go smoothly and I went to my dialysis session. The catheter didn’t work, so I had to go back and get another one done. I couldn’t have been off dialysis for 5 days at that time, so they wanted me back as soon as I could be. That meant no sedation, which I didn’t do on the first surgery that day either. The surgeon did that one in like 5 minutes and it worked fine until the middle of September, right before I found out I was in remission.

It failed early in a Tuesday session, which meant I hadn’t had any dialysis other than the 40 minutes of that one since Saturday. They couldn’t get me in for surgery until Wednesday, which meant it was going to be bad for me because I wouldn’t be able to get into dialysis until 2pm Wednesday. I decided to just try to sleep through it because I felt like s***.

The surgeon for that catheter was rough and it was painful despite having lidocaine numbing shots. The person who threaded the catheter did it extremely slowly and I felt every bit of it. It was not a good experience, but the catheter worked…until 10 days later when it failed.

Because of my experience on the previous surgery, I told the nurse that I wanted to be sedated, which is a twilight sedation. If I felt any pain, I didn’t care, but was awake the entire surgery. It was a different surgeon than the previous one, and it appeared to go smoothly. That catheter worked until it failed…again about 10 days later.

I ended up back with the same surgeon as CVCs 2 and 3 (July 6) on CVC number 6. I asked for sedation again, and he was just as fast and smooth as he was on July 6. I still have that CVC (identical to the one that previously worked the longest), which I believe was put in toward the middle of October. Some similar signs to failure looked like they were going to happen in early April, but it’s still working fine. There was one session in early May where the nurse thought my catheter was failing but after doing some detailed testing, he said my catheter was fine and that it was the machine causing the problem. I haven’t really had any issues since, knock on wood.

As for a fistula, they’ve been giving me the hard sell since pretty early in there, and I do not want it. Everyone says CVCs are bad, but my oncologist prefers me to have that and to not have a major surgery like a fistula (at least back when they were recommending it). I don’t want a fistula because that implies permanence to dialysis for me and I don’t accept that permanence. Knock on wood again, I haven’t had any infections with my CVC I think because of how careful I am with it. I do not ever let it get wet, and my understanding is a lot of people aren’t careful at all with those.

I was told by a nurse practitioner early on that keeping it could cause a blood infection. I told her it was too late, because Multiple Myeloma was already an incurable blood infection for me. Every once in a while they ask, and I always tell them no. I’m going to need to be pretty far in without a change to even consider it, but it’s not on my radar at all right now.

3 Likes
51

I guess I will elaborate on my thanks.

One of my pet theses is that to be human is to be addicted to stories, both telling our own and consuming others, both real and fictional. Even when we want true information, we want it in story form, and we elevate fake stories about fake people as being nevertheless emblematic of the human experience.

Death is a really popular story subject. Murder mysteries, war stories, paranormal thrillers, and heroes vanquishing bad guys all tickle our fascination with death. Death is, after all, the inevitable end to all our stories. But when it comes to real stories of actually flirting with death, we often shy away, both from telling and from listening and learning from. We often put aging parents in the hands of others rather than facing the reality ourselves, but even when caring for them, we often feel like we are a part of the story (or it’s protagonist) rather than hearing the story the caretaker is a part of. And on the other side, the person dying my die too quickly or be too incapacitated to really tell a story as they go.

Real stories like this are often untold, because they are hard to read and hard to tell. But, they matter, and they are far more likely to be relevant to our experiences than any murder mystery, even though we can watch murder mysteries like 5 times a day every night in prime time on CBS.

So, thank you wholeheartedly for sharing, and I am happy so many have joined you here. It’s hard, and it’s brave, but it’s very, very human.

10 Likes
52

I have nothing of value to add nunnehi but I hope that you beat the odds, beat your illness, and continue to be a contributing member to this forum for much longer than you imagine possible.

11 Likes
53

Damn man. Usually those tunneled catheters have a cuff that makes pulling them out quite difficult. Maybe you had an uncuffed one but sounds like no.

I get what you’re saying about the fistula. Glad you’ve escaped the dreaded CLABSI (Central Line Associated Bloodstream Infection).

1 Like
54

I’ve never actually seen the incision point. They clean it in dialysis and redress it. I just leave it alone and never let it get wet. I hope that’s contributing to my lack of infections.

The interesting thing is they’ve been able to use the same original hole to redo every catheter I’ve had to get replaced, which I think is slightly abnormal though I’m not sure about that.

55

hmm I wouldn’t know, I don’t do tunneled catheters

56

Plenty of people get one, then they get a kidney transplant and are off dialysis indefinitely. It just remains unused. Doesn’t have to feel permanent if you don’t let it.

57

The fistula is still there though

58

Yes, that is what I wrote,

The permanence we are talking about is wrt to dialysis, not the fistula

So, in other words just because you get a fistula it doesn’t imply permanent dialysis. Plenty of people have fistulas and get off dialysis. Maybe thinking of that may lead him to change his mind. Probably not, tho. His mind seems made up.

59

Melk I realize understanding other humans is hard for you sometimes but it’s a permanent change to your body as well as anticipating indefinite dialysis.

60

Of all the things we take for granted as we stroll through our daily lives, health has to be the most significant.

Everybody knows how shitty it is to feel like shit, but we don’t really appreciate how great it is when things return to normal (as they almost always do).

I was pretty sick for a while, and now I’m mostly better. No matter what else is going on, I try to have gratitude that I’m still feeling good.

Thanks for sharing, and I hope you are getting something out of telling your stories.

Edit: maybe not a super hot take, but I think id rather be the sick person than the spouse/caregiver. I can’t even imagine what it’s like to watch somebody you love go through something horrible and be completely powerless to do anything about it.

3 Likes