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Monday, February 6, 2012

Countdown to February 16

So it seems that I'm actually somewhat stressed about the upcoming transplant, as evidenced by the violent nightmares I've been having and the utter losing-of-my-shit that transpired yesterday (complete with yelling, throwing of inanimate objects, and a good half-hour cry on the bathroom floor). And I thought I was doing so well.

I like to be ready for things, and it turns out that there's a lot that one just can't plan ahead when facing major surgery. Who knew? But I have crossed a number of things off my get-ready-list, including buying a new bathrobe and refinancing the mortgage. The taxes are almost finished and I may or may not get around to cleaning the basement, which I'm almost okay with. Now, if I could only get the damn laundry folded.

The next 9 days are going to feel like suspended animation as I try hard not to get sick (which would postpone the surgery) and obsess about my to-do list. If you run into Michael, buy him a Scotch, won't you? He's earned it.

***

FAQs about the Transplant

Why did my kidneys fail (on the off-chance there are readers here who haven't been around forever)?
I have a genetic disease called polycystic kidney disease which causes large cysts to grow in the kidneys, creating scar tissue in their path and eventually causing the kidneys to fail. (My kidney function started to slide about 6 years ago.) One in 600 Americans is affected by PKD, and each child of a PKD patient has a 50/50 chance of having PKD.

How am I getting a new kidney?
I'm incredibly lucky that my older brother is a compatible blood type to me and is willing to give me one of his kidneys. And that I have private insurance and a supportive family and a flexible work schedule. Most kidney patients are not so lucky.

Will the new kidney grow cysts eventually?
Nope. PKD is genetic and my older brother does not have PKD. As his kidney has its own (PKD-free) DNA, it will not develop cysts.

What happens to my old kidneys?
My old kidneys are staying put for now. They are terribly enlarged and uncomfortable (and responsible for my poor digestion and unneeded weight loss over the last year), but they will stay in until I'm "kidney stable." They're still working a little (about 14%), and until we're sure the new kidney is going to function and not be rejected, they're staying in. We'll revisit that discussion in 6-12 months; until then, I'm gonna have three kidneys. Please don't point and stare when you see me.

How long is the hospitalization and recovery?
I'll be in the hospital for about 5 days, and on non-driving restrictions for about a month, depending on how things go. Leave book and Netflix suggestions in the comments!

What's this about rejection?
The most crucial aspect of managing life post-transplant is avoiding rejection of the new organ. I'll receive strong IV drugs in the hospital for a few days, then receive maintenance doses of immunosuppressants that I'll have to take for the rest of my life - without them, my body will see the new kidney as a foreign invader and will fight it off. The good news is that the meds have come a long way, and while it used to be standard for transplantees to take prednisone (a steroid) for the rest of their lives, the newer drugs have much fewer nasty side effects. The bad news is, it's still immunosuppression, and I can expect to get sick more often. My father was often in and out of emergency rooms with cellulitis and other opportunistic infections, so I kind of know what I'm in for.

What is it like living in an immune-supressed state? What restrictions will I have?
For the first month, I'm going to play it by ear. But as it's cold and flu season, I'm going to err on the side of caution and not put myself in situations where I'm exposed to large groups of people and their germs. My transplant center is less conservative than most, but for the initial 6 months, I'll be avoiding sushi, hot tubs, and cleaning up after the dog. Unfortunately, due to soil-borne pathogens, I won't be allowed to garden for 3-5 months, which will pretty much kill the 2012 growing season (sob). But it's a small price to pay.

How long will this kidney last me?
The average lifespan of a transplanted kidney from a living, related donor is 12 years. That being said, my dad's first (living, related donor) transplant lasted him almost 20 years, and my brother and I are both in good health (aside from the pesky kidney failure). So I expect to get at least 20 years out of it.

What happens then?
Back to the beginning, trying for a transplant in any way possible. If that doesn't work, then dialysis. We'll worry about that when the time comes.

How are Michael and the kids dealing with everything?
Michael could probably use a few good, stiff drinks by this point, if not a vacation. The kids are reacting appropriately, which is to say that they are a little worried that it will be tough at first, but optimistic that eventually their mom is going to feel better and have more energy than she has in a long time. Michael will be home with me while I recuperate, so by April, I may just put him on a plane to anywhere for a sanity break.

How am I going to let you know what's going on?
I'm not sure whether there is wireless in the patient rooms at my hospital, but I'll post as soon as I can following the surgery. I'm going to twiddling my thumbs for a LOT of weeks at home, so prepare yourselves for an onslaught of (probably nonsensical) blogging!

6 comments:

Tina said...

Ruth; I've been away from my blog for quite a while now, but have been keeping up with my reader more or less. Just want you to know that you and your family are in my thoughts and I'm wishing you the best...and a very speedy recovery!

Magpie said...

Thinking good healthy thoughts for you. Also, thanks for the FAQ - very interesting to read of the details.

MemeGRL said...

I can't wait to brag that I have a friend with three kidneys. How cool are you?!
Seriously. Thinking of you. And due to congenital can't-get-my-act-togetherness, I'm at some store (Target, BJ's, Trader Joe's, Coop...) just about every day. If you have a hankering for something just buzz me and I'm happy to drop it at your door.
Cheery germ-free thoughts to you!

Christine said...

So that breakdown you mentioned in the first paragraph? That was me in December, like down to the crying on the bathroom floor and everything. I thought I was OVER this postpartum crap?! *sigh*

My husband just had a new scan a couple of days ago. He hasn't heard back from his doctor yet, but whenever it's something to do with his kidneys I get so nervous. His mom is doing great after her transplant, but I still worry. And I HATE that it's a 50/50 chance. I look at my son and just pray he got the good 50. And if not, that we will have made it even further in research and treatment.

Best wishes with EVERYTHING, for you and for the family.

Anonymous said...

Good luck, Ruth!!! I read your blog often (my younger daughter has PKD) and I wanted to let you know I'm keeping you in my prayers and praying you will have a quick, complete, easy recovery, and lots and lots of great years with your new kidney.
xoxo,
Marlene

Heidi Mordhorst said...

Hello Ruth, Michael and boys-

I've been hanging on by my fingertips, just managing to write my own blog so that I can still call myself a writer while I navigate this first year of full-time teaching, so I'm woefully out of the loop. This post is so helpful and makes it easy for me to imagine how thrilled you must be to wake up on the other side of your surgery, with sensible hopes for the next month and the next 20 years. May all be as well as it can be!

Lots of love to all of you!