Friday, March 18, 2011

My friend calls it "drunk dialing the blog"

That's what she says, anyway, when you find yourself awake at night and sleep is far away and you have the good luck to have a blog. I guess it's the 21st century version of drunk dialing somebody, when you call them up for a brain dump. Except because we're mothers (and, in my case, happen to be a Mormon), we don't drink. So blogging is the next best thing.

(Well, being drunk is probably more fun than blogging, but you take what you can get.)

Not that I have anything too radical to say. In PKD related news, my creatnine is up, which can't be good, but I haven't sat down with anybody to calculate my GFR and all that jazz. So I'm not sure EXACTLY what it means. But I know it means I'm off the plateau I've been enjoying for the last 2 and a half years, so that's kind of a bummer. We'll just have to wait for the next plateau, I guess.

In other non-PKD related news, it's spring around these parts, and it's such a luxurious glorious thing it almost makes a girl feel a little crazy with happiness. My husband planted a dogwood, which is the first tree we've planted in our yard. It's the first thing we've done in 5 years, beyond flower beds and vegetable gardening, that really changes the landscape. It feels permanent. And grown up. Like we're finally pulling things together.

Of course, then I walk into my house, past the chalk drawings the porch and the dirty rocking chair, and come face to face with the dog hair and the toys littering the playroom and the toilet paper my 3 year old has unraveled in the bathroom, and I realize that we're really not all that together after all.

So then I go back outside and pretend I didn't see any of that other stuff.

(I'm excellent at solving problems by ignoring them.)

In body-related news, I went to get my PT eval done today, only to be told that my appt was next week. I brandished the doctor's order at the girl behind the desk and said, "I SWEAR I was told to come in today," and she politely pointed out that the piece of paper I was using as my defense did indeed have the words, "PT appt, 3/25, 9:30am" written on it. And when I say politely, I mean she really could not have been nicer.

Which is to say, I am a dork.

In actual news related news, a local news story is coming out about me on Sunday. It's been kinda fun to tell my story to a reporter, and get my picture taken (although I haven't seen the picture yet, so I may be using a different word than "fun" when I see it). It's funny, because a lot of other diseases are a lot more serious than mine, and while mine doesn't have a treatment or a cure, there is the possibility of a transplant, which can't be THAT bad. I mean, it's not an ideal situation, for sure, but there are lots worse things. So I sometimes have a weird kind of guilt about PKD, like it should take a back seat to bolder, sexier diseases, like cancer and diabetes. But nobody has ever heard of PKD, so it makes a good story. (And my kids are awful cute, so there's that, too.) Anyway, I hope the story will be well received. It was sure fun to work on.

I'm going to try to go to sleep now. The brain dump is complete. Ah, the power of bloggin....

15 comments:

Lance Bukoff said...

Dear Ms. Oman,

I read the story about you in the Daily Press. It's truly inspirational.

My wife has PKD. She got it from her dad, who died of kidney failure in his forties. My wife's mom died of breast cancer. Having been orphaned at the age of 10, my wife assumed she would not live past her forties.

When it became clear to both of us that our relationship was quite serious, she told me about her PKD. She wanted to make sure that I knew what I was getting into if we "sealed the deal." I remember thinking that any small doubts I might have had about marriage had just been blow away, because at that very moment I knew I would donate a kidney to her when the time came. How could there be any doubts, then, about marrying her?

That was 20 years ago. Three years ago my wife was approaching ESRD. As it turned out I was disqualified from donating. That was maybe the biggest heartbreak I've felt in my life. So, the best I could do was to help my wife mount a campaign to find a donor. We put a lot of effort into it, and in fact we had 12 people volunteer to be tested! Incredible! One of her friends was cleared to donate.

The second anniversary of the transplant operation is coming up in a few days and my wife is now 57, perfectly healthy, and so is the donor.

So you you see, you have much reason to be optimistic about your future. When my father-in-law died, little was known about PKD, kidney transplants were still fairly rare, and dialysis (one form only) was virtually the only option for treatment. Now, as you know, the future is much brighter. Research is underway on many fronts, with great promise for a breakthrough.

What you're doing with your blog is so very important to support funding of research. Consider this: I once was asked to speak to a class of college sophomores. The course was something like "Medicine and you." I would speak first, followed by a transplant nurse who would speak about chronic kidney disease in general. I asked what I should talk about, and was told "Just relate your personal experiences - you'll get plenty of questions."

I started by asking everyone to raise their hand in the air. I then asked them to drop their hand only if they'd never heard of sickle cell anemia. Then hemophilia. Then cystic fibrosis. Then muscular dystrophy, and then Down Syndrome. I asked them to look around the room to count the number of people who now had their hands lowered. Zero. Then I asked them to lower their hands if they had never heard of PKD, or polycystic kidney disease. The only hands left in the air were the nurse's and mine. There were almost forty people in the room. I then told them "Don't worry - I never heard of it either until I met my wife to be." That's how I started the talk.

But think of it - Only two people out of some forty or so had never heard of the disease that is such a huge presence in your life and in the lives of your family and friends, and in the lives of over a half million Americans who have PKD. That's why it's so important to reach out and let people know about PKD. It's the only way we'll get the research done that we need to get done to beat PKD.

So...thank you!

I hope you don't mind, but I've taken the liberty of posting your story to the blog I run to support the Boston Walk for PKD (www.bostonpkdwalk.org). I also posted a link to your blog. If you have a moment and the inclination to do so, please post a link to our blog, as well.

Thanks,

Lance Bukoff

Angela.Ashley.Noelle said...

I came acrossed your article in the Daily Press and it brought me to your wonderful blog.
Thank you so much for your wonderful outlook and inspiration.
I have an 8 month old daughter who was born with only 1 kidney. On top of that she has a couple of cysts on it. We are still having testing done to determine if we are dealing with PKD.
In the meantime, both my husband and I had u/s.
Turns out I have a horseshoe kidney. on top of that, it is covered in calcium....??
Never would have known.

Your one post about back ache and lying on your back really was an "aha" moment for me. As my kidney is not protected, I often have felt that pain and pressure as well.
Also I have recently started experiencing more numbness in my feet and toes.

Thank you

Mandy said...

I am sitting here amazed by the internet and it's ability to bring people with common interests together. My husband and 2 daughters have PKD. My husband had a successful transplant in May 2009 (age 34) and is doing GREAT!. We are currently considering the possibility of a third child and reading your story has given me some food for thought. At the moment my girls are healthy and normal in their kidney function. But someday they will experience flank pain as you have and they will have to deal with possible failure and complicated pregnancies.

I am also a Mormon. I would love to have more children, but I wonder if I am being selfish or naive in that desire.

In any case, I appreciate you sharing your story. I saw it on the PKD facebook page.

I would love to hear your thoughts since I often worry that my children will be mad at us for knowingly having kids with a 50% chance of PKD. Maybe it sounds silly, but it is very real to me.

If Lance reads this: Thanks for supporting the Boston Walk! We did it for the first time last Fall and raised ~4,000! It was a great experience for me and I became very aware of how blessed our family is to have the Dominant form, not the childhood recessive PKD. We have since moved, but will locate a local walk.

Carolina Nightingale said...

Well, I have the good fortuneof having worked with Heather (as the "other heather") on our literary magazine, and I, too, had never known what PKD was. I read the article, surprised and astonished that I could know so little about a woman I already admired and was in awe of...and am now even more so.

I had no idea you were facing this particular illness. Or any illness at all. I suppose, being caught up in all the Lyme research, and branching out into other things as well, I eventually would have learned something about PKD...or maybe not, considering our shared lack of time and energy for those things. But I'm certainly glad that, though you must face this dragon, you are doing it courageously, and with great faith.

Just one more reason to add to the list of why you are one of my heroes.

-HB

Mary D said...

Hi Heather,
I was just reading about the article about your PKD diagnosis on the PKD site this morning and was curious about your blog so I jumped over here and I wanted to respond. Actually more of an acknowledgement of how you are living with PKD. I liked reading your story because although this disease is ever present( I have it as well) it doesn’t define you. No poor me attitude and or focused on pain, and loss.
You have a great attitude about it which as you pointed out- is not always the case on some of the PKD communities. I was diagnosed in my mid 30s (Dad had PKD) right after my Last child was born and like you had several unexplained miscarriages, headaches forever, and lots of lower back pain and tiredness.
I laugh about it sometimes because I think it was a blessing not to connect all the symptoms until my children were older, as I would have surely noticed everyone of them and likely been upset about them. I am just now 20 years after being diagnosed sharing my PKD with close friends. I avoided this for years due to the 1. Offhand offers of a kidney from well meaning friends who have no idea what that means and also 2 I am not good with that kind of attention. I have a good doctor who is not a surgeon who hopes to keep me functioning for a long time past 58 so don’t get hung up on the numbers in the pamphlets.
You seem to be well educated so that probably doesn’t need to be said but just in case.

I am also a big gardener, although I will admit that gardening gets a little harder nowadays but I am in my mid fifties now so everything is harder anyway. I also try to get to the gym and stay as healthy as I can. I am also trying to travel as much as I can right now, which has been wonderful, and I still work full time.

Good luck as you take this journey which is really so little known, and enjoy what sounds like a wonderful life along the way.

Best,

Mary D.

Jennifer said...

Hi Heather - I read about you on a PKD Foundation facebook post, thanks so much for sharing your story and positive attitude! I too have PKD, was diagnosed last year at 41 when my blood preasure went haywire. My Mom has it and is just about to begin dialysis at 70, so I'm hoping I will be as lucky. I also am a runner and know that somehow it has to help, definately for my peace of mind and perhaps one day to put me in the best shape to recieve a donor kidney.
Take care!

Heather O. said...

Wow, look at all the love! Thanks for being here, everybody, and for sharing your stories. It's great to connect with so many people going through the same types of things.

And Mandy, I don't know what to tell you about having another child. All I know is that almost every night I ask my husband, "Should we have another one?" or he asks me, "Should we have another one?" We want another one, so very much, and while I don't think it's selfish to have a child that might have PKD, I do think about how selfish it is to risk my own life when my kids still need a mom. My nephrologist was pretty candid about things, about how I could probably carry a baby to term, but then would most likely crash afterwards, possibly needing dialysis, or maybe be put on a tranplant list, and then all the recovery from that, etc. So she said, "So, if you're very lucky, it will be only about 3 years before you'll be able to hold your baby. See? No problem!" The realities of my BP issues are always what stops us, but like I said, we still have this conversation almost every night. So as you can see, as far as advice, I've pretty much got nothin'.

RobMonroe said...

Hey Heather - would you mind sending me the article? Would love to see what the reporter heard from your story! (Having "known" you for a few years now, always fun to see how others hear...)

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