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My Story: MM, Kidney Failure & Managing Dialysis
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It appears no one has kicked this off, so I'll be the first!
Just a brief (it turned out to be lengthy) overview: In Jan 2020, I injured my back lifting some exercise equipment (I'll allow time for the irony to sink in like butter on corn!) Around Feb/March I was experiencing more back pain kind of right below my shoulder blades. During this same time I had frequent nighttime urination, night sweats, fatigue, lots of gurgling in my stomach? intestines?.
Of course, this is when all the stories were focused on Covid-19 entering the US. We started restricting our circle of travel and number of people we interacted with. By April/May I was having a feeling of my trunk, I don't think "shaking" is the right description. Basically, it was like a muscle spasm or tingling that would start below my armpits and travel to my waist. Occasionally it would happen in my legs as well. By May we were on lockdown, and no one knew if it was safe to go to your family doctor or the ER, so I toughed it out. I have suffered from anxiety my whole life, so some of the symptoms I thought might be related to my reaction to the pandemic.
At some point, I did a phone visit with my family doctor and she recommended Pepcid thinking I may be developing an ulcer. That didn't help. So by the end of May, she ordered blood work at the hospital. (By that time, I had developed tremors in my legs for no reason.) I drove myself in for the draw and drove home. Two hours later my doctor called, "Are you still at the hospital?" "No. Home." "How did you get there." "I drove myself." "You're in kidney failure. We have people on dialysis LONG before their numbers are as low as yours. You better go back up for a second run of tests."
Sure enough, I was in kidney failure. Now, I live in a small, rural town. At one point, the ER doc asked, "Do you have any bone pain?" "Well, no, not really. I don't feel any pain 'inside' my bones." "I think you may have multiple myeloma." I didn't know what that was, but "oma" typically means cancer. Oh well, I'm not going to hang my hat on a small town ER doc's guess. At any rate, it was decided I would get transferred to a larger hospital in the same system. They don't do dialysis in the small hospital.
My ER exam room was right across from the nurse's station. Soon I heard them say, "They say the dam is going to break." (This was May 19, 2022.) Then they said, "It broke, and they are evacuating the hospital [that I was going to be transferred to]." I should mention that at this point in time, no one else was allowed in with me - not for the exam nor to visit me. I don't think anyone was even thinking about FaceTime, and I hadn't even heard of Zoom at that point.
Long story short, the next day I signed myself out of the local hospital because it seemed they were uncertain of what to do with me or where I would go. Friends found a hospital to accept me that was about two hours away. We went there because they knew the doctor on staff was an excellent kidney doctor. (I wasn't even thinking about the possibility of MM - just get the current need fixed.)
My creatinine was 9.7. The doctor said he'd never see it that high. Of course, all my other numbers were way out of whack as well. I got tested for heavy metals, Lyme disease, and a host of other things. My MM labs came back with my Kappa free light chains at 12,600. Again, the doctors hadn't see it that high. And, as things worked out, that hospital just happened to have the top myeloma specialist on that side of the state. Fortunately, the day we arrived, that hospital began allowing one person to go up with you, but no general visitors. I was so happy my wife could be there to take notes, and she stayed right in the room with me night and day.
I got a central venous catheter inserted and had my first dialysis treatment the next day. As it seemed a stem cell transplant was not for me, I got my first round of DVd the day after that. In all, I was in the hospital for two weeks.
The kidney doc told me when I left to try to drink 2L of fluid daily to try and flush out the kidneys. He also said to keep on the staff at dialysis so they just don't "put me in the system." Our hope was that the kidneys would recover. They did not. They said I was acute (even though I had a mask on) for the first 90 days. If they didn't see improvement, I would be in end-stage or chronic kidney disease. No real improvement in that time frame, so now it was time to decide on a fistula or peritoneal dialysis.
I decided on peritoneal. Once that was done, they strongly encouraged me to get a fistula as a backup. The surgeon connected the vein and artery just behind my thumb. "There's a 40% chance of failure." It failed. We discussed getting another one, but the NEW surgeon I consulted said, "Why? We can just pop in a CVC and an AV graft and get you up and running." By this time, I was sick of surgeries and frustrated with fistulas so I opted to do nothing.
I started out on 4 exchanges of 2500ml 7 days a week. Once they did a PET test and found out I seem to clean better on longer runs, *I* suggested (not them) to drop it to 3 exchanges over the same time period. One less time for the stupid alarms to wake me. Since then, I've dropped my fill volume to 1700 as the 2500 was uncomfortable even when lying down.
Recently, my initial doctor at dialysis left for a job in another state, and the big guy had to do the rotations. I was so happy. Immediately, he dropped me from 3 cycles to 2. Tests (KT/v) came back good, so he dropped me from 7 days a week to 5. Again, tests came back good so he dropped me to 4 days a week. Something I am ever so grateful for.
Just so you know, my KT/v has been running 4.5 or higher for maybe a year-and-a-half or two years. When I kept asking if something could be adjusted since it's so high, my nurse kept saying, "I don't know what that chemo (I've been continuing on Dd for the last couple years) is doing to your blood, I want it extra clean." Thankfully, the new doctor didn't see it the same way. FYI: I asked my MM specialist if the treatments would affect the 'cleanliness' of the blood or dialysis, and she said, "No."
So all things considered, I'm doing quite well. The treatments are keeping the MM in check for now, and I'm hoping my next visit will cause my kidney doc to make even more changes! (Do I hear three days a week?)
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