Thursday, October 30, 2014

Bodies are not like houses

Our house is old.  Not cool old, like historical mansion type old, but rather annoying, built in the 80's with cruddy construction old.  We like the layout, we LOVE the neighborhood, but the house itself is, in a lot of ways, a piece of crap.

Over the 8 years we've lived in it, we've had to replace, well, a lot of things.  We've replaced the carpet, tile, and hardwood on the main floor.  My husband had to rebuild our porch because it literally fell off the house.  We've had to replace both the front storm door and the back door, because they, again, fell off.  We've had to replace the roof, the siding, and in the not too distant future, we will have to replace the pipes as well.  The pipes are a ticking time bomb, we know, but we've learned as homeowners that unless you want to be buried under a mound of debt, you have to just take one thing at a time, and currently we have a broken garage door to fix (why is it always doors???).  And we've learned the hard way that replacing worn out things is almost always better than trying to repair them.

I read an article once about aging, and how there is a medical doctor out there who is trying to reverse the process, and how he thinks that's the new frontier of medicine.  With an aging population and healthcare costs skyrocketing, it seems kind of legit that keeping people healthier longer would be worth some research investment.  But the story got kind of wacky when the doctor in question started talking about how the possibility of immortality was not so far fetched, that we could, in theory, keep a body going forever.

"We do it with houses all the time," he explained.

And it was there that he lost me.  Because bodies are not like houses.

When I explain PKD to somebody for the first time, there are two inevitable questions that they ask:

"Are you on a donor list yet?"

No, I explain, you can't really be on a donor list until your kidneys fail. Insurance won't cover donor testing, etc, until the patient is at 15% or 20% function (I hear different numbers from different people, but it's around there).

And then there's the second question:

"Why wouldn't you just put in a new kidney now?  Get it taken care of?"

And then I explain that putting in a new kidney is one giant freakin' big deal.

Usually I leave it at that (and I say it politely and snark free), but if the person pursues the notion (and I never mind when people pursue the topic---I think about PKD almost all the time, so I'm happy to talk about something that I'm constantly thinking about), I go into the issues that accompany a transplant---risk of rejection,  how long a transplanted kidney can last, the regimen of immunosuppressant meds, the increased risk of cancer, and oh yeah, the surgery where they kind of like rip you open and then sew you up again.

I also learned today from my nephrologist that patients with PKD have an increased risk of kidney cancer on TOP of the general population's risk for skin cancer and lymphoma after organ transplant, because the cysts can continue to cause issues, because basically, cysts are jerks.  Obviously the cystic kidneys can be (and sometimes are) removed, but again, that is also a big deal.  I'm not sure why---I haven't needed to explore that part of the journey yet, but I heard a nephrologist at the PKD convention say, "It's just a huge deal to remove the kidneys.  Trust us on this."

I trust him.

So a person would do well to do whatever she can do to maintain her current level of function, and keep her own organs in her body for as long as those organs will do the job, no matter how badly they are doing it.  Because until they quit completely, bad kidneys that are still your own and are still functioning at a decent level are better than a new kidney that is not your own.

Replacing a kidney is not like replacing a door.  Or pipes.  Or a worn out washing machine.  It's a giant freakin' big deal.  Not the biggest deal in the world, and not the scariest, and not even the most unpleasant.  But still, it's something that is best put off as long as possible.

And last time I checked, they don't sell kidneys at Home Depot.


cran said...

Hi, Heather!

I have PKD as well. I was diagnosed at age 19 and am now 50. The decline of renal function was fairly slow for me. I was transplanted two years ago after a two year wait on the list. My previous neph (now retired) did not recommend removal of the native kidneys because it is, or was, a bloody and lengthy surgery, as the cysts tend to adhere to the surrounding organs. I do not have an excessive amount of pain from them, so I have never seriously considered having them removed. At first it was frustrating to lose my waistline and try to find clothing that looked ok. For the two months, in 2012, when I was on hemodialysis, they produced enough urine that bloating was not a problem. The dialysis did not have to remove fluid, just waste products and that helped me to have a more stable, less harsh dialysis experience.
I understand this is a big part of your life. My advice to you is to not let the worries take over. Keep your bp under control, drink plenty of fluids to keep your kidneys flushed and keep your regular neph checkups. Remember that the transplant is not a cure, just a "replacement therapy". Maybe the best piece of advice is to keep talking to people, check out online groups, etc. those little worries can become big if you don't attend to them. Wow, I sound old and preachy. Anyway, if you're interested in an email swap, let me know. I live in the mid-Atlantic region too.

Heather O. said...

Thanks for the comment, Cran.

I try not to get too bogged down about the worries. I've learning to take things as they come.

Lisa said...

I was diagnosed with APKD at age 20; I'm now 35 (mother of 2) with eGFR of 40. I recently asked my nephrologist about removing the old kidneys and she said they almost never do because they actually do still function a tiny bit, help with urine output, plus they do other things than filtering the blood...I think she said potassium regulation, so taking them out causes problems.

My kidney function was stable at eGFR 90 for nearly 15 years. In the last 18 months (I also had my 2nd child in there) I've been rapidly declining. It's scary as I thought I'd be much older before all this started happening. For me, it has give me clarity on what I really want to do with the rest of my life.

Oh, and I'm the first in my large family with this disease. The joys of being a mutant.

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