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Tuesday, February 2, 2016

The [Other] Elephant in the Room

Generally the phrase "elephant in the room" refers to an obvious truth that is being ignored. It's clear I have Multiple Myeloma, and we hardly ignore it. Or do we. I've said before, and I will repeat, that most of the time I want people to just treat me as normal. Some people know I have MM, and some don't. For those that do know, we try to put it aside.

The other elephant in my room is kidney failure.

People sometimes ask if I'm still on dialysis, how often. And for how much longer? The fact is I am still on dialysis, every single night (for 10 hours), and there is no anticipated end. Remember, too, that I lost my left kidney due to another cancer (tumor). That in itself was scary and no small deal; but in my case as a whole, it feels to be of little consequence, cancer-wise. Certainly it had an overwhelming effect: it put me back on dialysis. I was off of dialysis while I had two kidneys, even if one had a tumor in it.

Dealing with kidney failure, more than cancer or chemo, detracts from my day-to-day life

I am often frustrated by my nephrologists, though a couple of them are my favorite doctors. These are the physicians dedicated to the kidney. Out of frustration, and to no-ones fault, I used to joke that what you needed to know to be a nephrologist was, "Let's wait and see". Of course this is a horrible joke. Like cancer, this disease process is understood. But the fact is, there is no pill or treatment that reverses kidney damage like I have. So at first it was "wait and see". Like dealing with cancer, waiting is hard. The physicians are caring, smart people, but kidneys are way too delicate and complex to "fix". So in the end the doctors feel to me like sherpas on this climb, guiding me through the process of living with this condition.

All Dialysis Sucks

Anyone who's been dependent on dialysis will tell you it sucks. There are two major types of dialysis: hemodialysis and peritoneal dialysis. The first involves pumping your blood out of your body, into a machine that has a very fine filter. The filter cleans your blood like your kidneys do. They also can remove excess fluid like your kidneys do. It's kidney replacement therapy. When I did hemodialysis, it was three times a week for four hours at a time, and this is typical. I did it for a couple of months after my initial hospital stay; and for a month or so after my left kidney was removed.

To me, hemodialysis (HD) was a lot like torture. It's hard to describe the feeling. When I first went in to the clinic, it felt very much like a very ugly service station; and it felt like I was being dropped into the system. It smells very clinical, and there were 20 or so reclining chairs, all lined up in a U shape around the room. You pick a chair, any chair, and sit down for your exchange. It's like a four hour flight to nowhere. I found it to be a very depressing place. The lights are blinding, and despite the requirement that everyone wear headphones on their personal TVs, the sound of The Price is Right and Jerry Springer echo. The chairs are uncomfortable, clearly picked out by some bean counter for (low) cost with little regard to patient comfort. No-one wants to be there. It left me feeling very "drained" most times. On my "off" days I felt worse.

Luckily for me there is peritoneal dialysis (PD), and I am able to do it. The advantages are many. It's done at home. It's done at night when I sleep. I feel better day-to-day, there are no ups-and-downs like with the every-other-day nature of HD.

Some of the downsides, besides having to do it all, are:

  • it takes 10 hours per day

  • I have to carry fluid around in my gut during the day (an extra 2.2 pounds worth)

  • it usually wakes me up multiple times per night

  • i get frequent leg cramps

  • there is always risk of infection, which in bad cases can lead to removal of the PD catheter and reverting back to HD (or worse).

Phosphorous: A Primary Enemy

As much better as PD is than HD, it still sucks. No machine can match your kidneys for efficiency, plus your kidneys work 24 x 7. PD doesn't clear certain kinds of waste very well, like phosphorus (P). Some P is necessary for good health, but high P is a danger, and it's harmful over the long term. It can cause your arteries to harden (calcify), and your skeleton to soften. Normal kidneys save you from excess P (and a lot of other things).

Where does phosphorous come from? Many foods have naturally-occurring phosphorous, like meats, fish, milk, hard cheeses, ice-cream, nuts. My other problem is: high-protein diet is also what I need, because PD robs protein. A big source of P is from preservatives in prepared foods. The food industry is hooked on the stuff. It's in just about everything. Read a food product label, and anywhere you see "something phosphate", it's there. Most soft drinks are full of it.

[caption id="attachment_503" align="alignright" width="207"]Protein Bars Great taste (and high phosphorus) -- guaranteed[/caption]

This particular label is from the "healthy" choice of protein bar suggested by my dietitian at my kidney clinic. It has 20% daily allowance of phosphorous.  Two of these in a day, and I'm way up there.

I am prescribed phosphate "binders" to take when I eat. These are giant horse-sized pills, and I need at least two per meal, and I take them with snacks if I feel there is high P. The idea is the chemicals in the pills "bind" to the P, in your stomach, before it gets into the digestive tract and can be absorbed by the body.

One of the major effects of long-term high-P is hardening (calcification) of the arteries. If they get hard enough, it can prevent one from getting a kidney transplant, for example. Or it can lead to heart problems; or stroke. High-P is correlated with short life.

Kidney Failure End-game

So what is the long-term as far as dialysis goes? The prognosis isn't good, people tend to not live very long on dialysis. The quality of life is poor, frankly. I don't mind the dietary changes, probably everyone should evaluate their diet likewise.

Kidneys regulate a lot more in your body than you might think. Another main function they do is regulate the production of red blood cells. Mine doesn't, so I take a shot of Epogen every other week. You can decide if you'd like to do the same here. My case is further complicated by the chemo, which can also play havoc with cell counts.

The only real end-game to kidney failure is transplantation.

Kidney transplant has been done in MM cases. It's tricky because after organ transplant you have to take immune-suppressing drugs. MM is an immune system disorder. While my UNC oncologist insists there is no scientific evidence to prove, for example, these drugs lead to increased MM relapse risk, the belief seem still to be present. I don't pretend to understand the ins and outs of this issue, or of the many other issues they have to consider.

Whether or not kidney transplant is appropriate in my case is currently under review by the transplant team at Duke University Hospital. I went in for an initial transplant evaluation Dec 4, 2015, and we are awaiting word. The major hang-up is the MM, and the opinions of my oncologists, and probably other oncologists and MM experts contacted by the transplant team.

Can I Borrow Your Ladder...and a Kidney?

We explained a lot of this to my extended family over the 2015 Christmas holiday recently. After hearing all this, someone keenly pointed out, "wow...that's a lot to think about". It was true (and genuinely keen): it is in fact a lot to think about, not for a potential living donor, but for me. It bears prayerful consideration by both parties. Would a kidney donation be put to good use? Am I a good steward of such a gift since I have MM? What if I fell over after 2 years? 3 years? 7 years?

They can do amazing things with transplants these days. One of the first things the team advised us was to expect the "what blood type is he?" question. Turns out it doesn't always matter as much as we'd think.

There are many hurdles in this process. Step 1 is to simply be qualified. That ball is rolling with the Duke transplant team, but we've yet to hear. Step 2 is to find a donor, either living or dead. The latter option can take years, because there are so many in need, and so few donors.

Finding a living donor is best, and these transplants have better outcomes. How do you go about finding one, though? I'm not sure.
Asking for a kidney is not like going next door to ask your neighbor to borrow their extension ladder.

But the question has to be posed; and we pray someone would answer. Even if a person isn't a match for me, they might be a match for someone else: while their donor is a match for me. Such arrangements can be made.

It's a big thing to ask, but it's a life-changer for the recipient. Life on dialysis is really no life at all, at least in terms of what I want to do with my life.

Living donors generally need to

  • Be 18 years old

  • Be free of high blood pressure, diabetes

  • Not been treated for or diagnosed with kidney stones

  • Have support system

My insurance will pay for the surgeries. Living donors typically have 1 to 2 day hospital stay, with followup care in 2 weeks.

How to donate or get more information?

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1 comment:

  1. […] these days, so we have no illusions that the grass is necessarily greener. Let’s face it, dialysis sucks no matter who’s administering […]