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Friday, February 26, 2016

Pushing Towards Kidney Transplant

Borrowed from my CaringBridge Journal

I'm sure a while back I read something my wife wrote about waiting. Cancer is a lot of waiting. Waiting for appointments, waiting at appointments. Waiting for results of tests, some of which can swing your life's course. I wrote about this myself recently in a blog post. Kidney failure is also a lot about its own waiting.

If you read that blog post, you'll know we recently waited on a very important bone marrow biopsy test result. If you haven't read it, please do, but the short version is: it was negative. As in good, clear, nothing. This was again the MRD test, same kind as I had about a year ago, which counts individual diseased cells out of millions of cells in your bone marrow sample. None found. No test is 100%, but this particular test is about as good as it gets, and we'll take it!

We have, over the past several months, been pressing the nephrologists (kidney docs) and the oncologists (cancer docs) to refer me to a local kidney transplant program, either at Duke or UNC Hospitals. Three of my main docs, Dr Christina Gasperetto (Duke Bone Marrow), Dr Pete Voorhees (UNC Cancer Hospital), and Dr Jason Eckel (Capital Nephrology) were crucial in helping push this along. I like my doctors, but out of all Pete is "my guy". He's the one you want looking after you. In the end, we went with Duke's transplant team, not because we didn't like UNC, but because Duke is known for taking on complicated cases. It didn't hurt that my kidney doc knows the head of the transplant program at Duke, and they had discussed my case. He said, sure, write the referral.

Anyway, the referral was written, then came more waiting. Some weeks later I had a feeling one particular day that something good was about to happen. It didn't. But the next day it did: they called me in. So on Dec 4 2014 we went in. We saw many people that day, learned a lot about transplants, getting on transplant lists, donations, recovering, post-transplant drugs, etc. There are many sub-professions interested in you, and how well suited you are for transplant from their perspective. These perspectives are: financial, support-system (social), nutrition, physical health (surgery), nephrology, and the overall risk/quality-of-life. They want a lot of test results, CT scans, heart stress tests, all of which we did.

We're pretty sure we got high marks in all these categories. Except: the Multiple Myeloma is a black mark, the ultimate variable. This is what makes the case so unusual. Few MM patients receive kidneys, although it has been done. Even fewer high-risk MM patients, like me, have had it done. Credit my wife for finding an article arguing more MM patients should get them (we cited it more than once this past year). A year ago I wasn't ready to even entertain kidney transplant, and now here we are. Kidney transplant is no picnic, but it sure has to beat being on dialysis.

We left Duke Dec 4, and didn't hear anything. We knew they were mulling it over; we knew the MM was the variable. We waited and waited, patiently. Well, finally after two months the call came: we'll put you on the list. That is, IF your bone marrow is again MRD negative. Read it now if you haven't yet. Scheduling the test, doing the test, waiting for the results: waiting is the hardest part. It's crushing sometimes, especially in cases like this.

Good things come to those who wait, right? Well, we've done our share of waiting. Finally we got the news just the other day: You're On The List. But wait. You're going to be "inactive" until we do another CT scan to follow up on a little something we saw on your CT scan from last September. We can schedule it in April; it should be fine, but we need to be sure.

So, we're waiting again. Seems like we're always waiting to wait, even with the flurry of activities (and real life) in the in-between. Assuming this scan is clear, there's more waiting, the next real waiting: a donor has to be found. Donors can be deceased or living. Outcomes from living donors are best and the wait times are much shorter. You can wait many years for a 'cadaver kidney'. Waiting for a cadaver kidney is tricky, I think. Main reason: someone has to die. But the fact is people do die. Many die while waiting for organ transplants. One real issue is that so few people are organ donors. Please consider becoming one if you aren't already.

I wrote in another blog post recently about the notion of seeking a living donor. How can you even ask someone for a kidney? It's a big ask with two major surgeries and life-changing impact. I take it very seriously, partly because I've already had one of my own kidneys surgically removed: I know something about that. Mine, however, did not benefit anyone.

One of the moments that's forever seared into my heart and mind from 18 months ago is my then-10-year-old son telling me he'd give me a kidney if I needed one.

I am not comfortable asking people to consider kidney donation on my behalf. How could anyone be comfortable? Time and dependence on dialysis have a way of changing your outlook. I ask because ostensibly I have little choice but to ask. It is a life-changer not just for me, but also for my family. I ask sincerely, and with full faithful, prayerful consideration of what my potential donors are deliberating, and what my ultimate donor is giving, and what they're giving up.

Even if my potential donor isn’t a match for me, they might be a match for someone else whose donor is a match for me. Such arrangements can be made. My currently being 'inactive' on the transplant list is not a hold-up for living donors to be evaluated.

Living donors generally need to

  • Be at least 18 years old

  • Be free of high blood pressure, diabetes

  • Not have been treated for or diagnosed with kidney stones

  • Have a support (social) system

My insurance will pay for the surgeries and donor evaluation expenses.

How to donate or get more information? Call the Duke Transplant Center: 919-613-7777

I've had a few people tell me they'd like to be considered, and it's a humbling experience. God said he is written on our hearts, and this is proof enough for me.

Friday, February 12, 2016

Hanging by a Moment

I'm falling even more in love with you
Letting go of all I've held on to
I'm standing here until you make me move
I'm hanging by a moment here with you
I'm living for the only thing I know
I'm running and not quite sure where to go
And I don't know what I'm diving into
Just hanging by a moment here with you

I was thinking earlier this week about this song. I have an intimate history with it. I'll try to explain that, but recently I heard it while I was still waiting for a rather major test result. When I first heard it some years ago, I thought it was a love song. It is a love song, but not between two people, but rather between a person and God.

We have been pressing for a kidney transplant since mid last year. After some discussion with the doctors, my kidney physician wrote a referral to the kidney transplant team at Duke University Hospital. Eventually they called me in for an initial evaluation on December 4, 2015.

The kidney transplant team had evaluated my case, and after much deliberation called me two months later. They decided that I would be listed on the transplant list if a new bone marrow sample tested negative. Like MRD negative. MRD testing (minimal residual disease) is fairly new, is extremely sensitive, and few labs around the world do it. Luckily, Duke is one.

This was mixed news, because it meant that my kidney transplant future, and really my MM status, hung in the balance. MRD testing is a high bar. I had one of these tests done about a year ago, a couple months after my stem cell transplant (SCT). It was negative at the time.

My MM-related blood numbers have been jumping around a bit lately, and so the MRD test was ordered: both for the purpose of the transplant and for determination of my MM status. For the MM, was I on the right treatment plan? That was the question.

Waiting is the hardest part

Whoever said that was right.

When you need a test, and the test results will literally swing the course of your life, those results can't come fast enough. Part of you wants the results right away, but there is also fear; you'd rather not know. What if it's bad news?

This is part and parcel of the cancer battle. Riding this roller coaster of emotion, trying to not let yourself get too high or too low. I found the other skill of being secure in each day is necessary. It's difficult to do, but you have to.

This past week has been a long one, we scheduled the bone marrow biopsy, and waited for the result. The marrow was taken Monday, and the result available Thursday. It's a remarkable thing that it can come that fast. Except when you're waiting for it, it's not that fast. It's seemingly forever.

Like trying not to watch water while it heats to a boil, you wait. You find things to occupy your mind, but it's always on your mind, looming like your own personal D-Day. Again this is a lesson in control; or lack of it. You can't control anything about this, so why worry? That is the hard part.
Therefore do not worry about tomorrow,  for tomorrow will worry about itself.Each day has enough trouble of its own.Matthew 6:34

Hanging by a Moment

I heard this song Wednesday. I was feeling down, worn out by the wait; failing the "do not worry about tomorrow" part. It made me think, because some years ago, when I crossed that line between non-believer and believer, this song played a part.

Anyway, it was a welcome reminder of my faith, and not to lose it.

Thursday morning came, I hadn't gone to work yet, and I was sitting at the breakfast table with my wife. We didn't know when the result was coming. We heard "end of the week" or "early next week". My phone rang, and I recognized the prefix as being from Duke. I knew right then what was coming, and I answered the phone.

I heard her say some things on the other end, and ultimately she came to it. "'s negative...this is a very good result." She said a couple more things, she'd notify the transplant team; I asked her to also notify my UNC oncologist.

I hung up the phone, and turned to my wife and said, "It's negative". We were overjoyed. We laughed and cried a while, then called my mom. The news propagated outward to my parents, my wife's parents, brother and sister, and so on.

It was a high bar, but we got over it.

This brings us to the next bar: kidney transplant eligibility. We've not yet heard back from them, as to whether they're actually going to put me on the list.

Once again, we're waiting, hanging by a moment. With You.

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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