QPD#1, Cheryl: “I never knew how much I peed until I had to collect it.”

At the urging of myself and her husband, Quinn’s Potential Donor #1 (QPD#1), is letting me blog about her urine. She was very reluctant (“Absolutely NOT!” she said) to let me blog it but then she didn’t get the jug over the weekend and so I told her she simply HAD TO let me blog.

She is concerned that a funnel wasn’t included in the collection kit, but our QPD#1, she’s smart, so she is finding that a plastic container works pretty good too.

If she were writing this she would tell you that it’s just pee! Pee! And those things are private. But then I guess she figured I might need some blog material and so here I am. Cheryl is the wife of Steve, who for a long time helped our family in the God department after Quinn’s birth as he was on the staff of our church. She and Jody, Gage’s donor are friends. She has two kids – teenagers! A musician son and ballerina daughter. Cheryl had given blood to become a donor for Gage and was in line after Jody. For the last two years since his transplant she’s said she would be there and ready when Quinn’s time came.

So here we are. I’ve asked her to be a guest author and am expecting a post soon. Maybe after she’s done keeping up with a big jug of pee. The urine collection is for them to figure out if she has any protein in her urine in a 24 hour period. If there is that could be an indication that she has a kidney issue. Am thinking that would stop the process for her and not sure if they investigate why or not in order to proceed.

So far, she’s filled out paperwork, given her blood, provided 3 BP readings and kept on the donor team to get things moving along. She’s motivated.

Why, you ask?

She just wants to help my girl. And she’s willing to let me talk about her pee. That’s pretty spectacular, right?

The past two weekends I have been telling our PKD story because I’ve met some new people. Last week it was Walk for PKD coordinators and this weekend it was with new board members.

I have to say…still over 7 years later it makes me sad when I think about nursing my girl in the living room a few hours after a doctor told me on the phone that my new daughter had PKD and needed a “transplant to survive” — all while I was packing to go home from the hospital with my beautiful, very much wanted and loved baby girl.

Even though I’ve moved on from that day in (what I think is) a positive way, I still think back to those first uncertain, dark days of learning our baby had an incurable, life-threatening disease and I feel sad for that mother.

I remember Julian’s face when he could tell the doctor on the phone was telling me something bad. I remember my sister crying when I repeated the words from the doctor, “polycystic kidney disease” and I remember hoping that the video we were taping couldn’t see the tears streaming down my face as I put my daughter in the car to go home. I remember sitting in the back seat with her and just repeating, “I don’t believe it. She looks so healthy.”

We left the hospital with no information. The clueless doctor didn’t do the simple blood test that would have revealed her kidney function, while reduced, was completely life sustainable. That doctor could have spared us several days of worry while we waited to see a nephrologist to confirm her kidney function.

I remember walking into my house, where my mother was waiting to greet her new granddaughter and how the instant she saw my face knew there was something wrong and instinctively rose from the chair to hug me. I remember sobbing a very deep, loud, humming cry. I remember how Quinn was cradled in my arms between our embrace when this happened. I’ll never forget when I answered the ringing phone and my friend Tina called to check on us how I could barely answer the question, “How are you?” because I was so in shock from the events of the past hour.

Over the next week as Julian and I would lock eyes, one or both of us would begin to cry. I don’t remember how many times I said, “I just don’t believe it. How could this be happening?”

On the day after we brought her home I sent out an email announcing our happiness about the joy of adding Quinnlin to our family. I told our friends and family that along with her beautiful eyes and long fingers and toes (and her 10lb body!) she also had been diagnosed with PKD and that we weren’t sure about much, but that she would need a kidney transplant.

The Saturday of that week was the first time that week I have a clear memory of us being a family of four. Gage was in the bath tub, I was holding Quinnlin and sitting on the floor and Julian was reaching over the tub to bathe Gage. That clear memory was the first in which I thought, things, they just move on…so what’s next?

Over the next couple of weeks we would learn about polycystic kidney disease and its affects. We learned that eventually our sweet baby would need a kidney transplant. We would learn that Gage could have it as well. And in fact, three months later we did. As we grappled with the fact that both of our children were diagnosed with a life-threatening disease we started to figure out what would become the new normal. And we started to learn that meant not sitting back.

Seven 1/2 years down the road I can say that our family has changed a lot from the picture we saw for us as a couple. We turned our sadness into advocacy. We turned our anger into activism. One of the best decisions I made throughout this journey was to connect with the PKD Foundation. They gave me a voice I didn’t know I had and they gave me a platform in which to speak. I’ll forever be grateful for the course our family life took as a result of the connections I’ve made. Connections that have included life long friendships and unparalleled medical care. All as a result of what transpired from the act of one family and one PKD doctor (link coming).

I want to look back at that mother who cradled her sick baby and tell her that it will be hard. There will be days of great fear and sadness. I want to tell her that through it all her family and friends will support them and love them. I want to tell her that her strong marriage will remain strong. I want to tell her that the people that she will meet along the way because of PKD will make her a better person; a stronger person. I want to tell her that no matter what, she’ll never give up and on many days, in fact more than not, she’ll even be happy.

It’s not a very clear picture of Gage (Digital Camera v1.0, circa 2001) but it sure is cute.

I have to take another break from TT, because well, I’ve been parenting and working and advocating all over the place. Client meetings, cleaning after renovation, laundry, and newly eating vegetarian (guess I’m following suit with the kids), and spending time untying knots that Gage is making with anything he can find, most recently a chaise lounge tied to a tree. Because shouldn’t everyone have outdoor furniture tied to a tree?

I’ve got a post started and when it gets done I’ll post it. Unfortunately, there are more travels for me this weekend (Board Meeting at the PKD office) and a kidney stone removal procedure next Friday. Gotta love a doc who lets you put that off.

Come on, I know you are jealous!

I’m at Walk for PKD training in Kansas City while my friends and family fend for themselves with the kids. And I’m here with some 50ish people doing the same thing – learning how to plan and execute a flawless Walk for PKD, while simultaneously raising money for research.

I do not have to come here. I’m able to host the event without coming here for training on how to do things better, smarter, faster. I would be able to raise money and have a successful event without being here.

But I need to be here. And I want to be here.

Being around the other Walk for PKD coordinators is the reason. There are some passionate people fighting PKD and being around them inspires me. They inspire me to be a better person. I want to have a BETTER event. I want to take some of their ideas and try them this year. I want to reach out more to people to help me in order to make the event grow. I want to do this in honor of Gage and Quinn. But I want to for the other people that sit in this room with me as well.

There are families represented here that have been dealing with PKD for GENERATIONS. Two, three, four generations. Grandparents, parents, aunts and uncles, siblings. Gone. Because of PKD. A disease that actually has a very good chance to be treated or cured in my lifetime. I can’t understand the pain of losing entire generations to PKD. Entire generations of people that left their families early and their loved ones who missed having their family members with them throughout life. There are other moms, like me, who took their little cherubs home as infants with the devastating news that our babies would need a transplant to survive.

It always helps me put my own struggles in perspective when I am around this many people fighting the same fight. My family and friends, while supportive (like you wouldn’t believe) and loving and most awesome, can’t understand what it is like in my world with sick kids. Yes, they have an idea. And many of them live it with us through our close ties with them and through this blog.

But they can’t understand the despair. They can’t understand how sad it can be in the fight alone facing appointment after appointment with bad news. Facing more complications than you thought you could ever handle. While going through the daily struggles of failing kidneys, educational and social deficits, financial uncertainty, fear of losing my kids, while still trying to make certain our family life is reasonably fun and fulfilling I know that the people who love us can’t understand.

They can’t know how the sorrow can creep up on you at a child’s birthday party, dinner out with friends, or in the quiet of the evening once the kids go to bed. They can’t know how sad it can be to be alone in the daily and unrelenting struggle.

That is not what it is like here. Everyone knows that helping spread the word to raise funds for the PKD Foundation is the quickest way to empowerment. It’s rewarding. It’s amazing to be part of a group that understands and is actively doing whatever they can to make a difference. For their families and for my family.

Here, among these people, I don’t feel so alone.

In the car during a family outing, we’re at a stop light, looking out the window and see someone walking by:

Quinn: “Wow, that girl with her belly!”

Me: “Yes, that is wow, but that’s not a girl.”

Gage, stretching to look: “I gotta see this.”

Quinn: “That was a boy? Cause it didn’t look like a boy.”

Me: “Well, that man was dressed as a woman.”

Gage: “Why?”

Me: “Some people believe they were born and they are in the wrong body. Girls feel on the inside that they are boys and boys like they are girls, or some people just like wearing the other gender’s clothes. They are called transvesti*es. Sometimes people even want to change their body parts to match the person they feel like on the inside. They are called transse*uals.”

Julian: Completely silent with eyes facing forward and no expression.

Quinnlin: “I wish I was a boy.”

Me: “I know, you’ve said that before.”

Quinnlin: “I like to be a girl sometimes, but sometimes I wish I were a boy.”

Gage: “I NEVER wished I was a girl.”

Me: “Well, I would love both of you no matter if you thought you were a boy or girl or wanted to dress like a boy or girl.”

Quinnlin: “I am hungry.”

Gage: “I am not hungry.”

They moved on quickly. Julian still silent. He NEVER saw that conversation coming.

These pictures of Gage on dialysis remind me of just how much we’ve been through. How much Gage has been through. Just over two years ago – a mere 4 days before Gage’s kidney transplant – Dan Larson, PKD Foundation President made a visit to Gage while he was on dialysis as part of  a weekend long trip to Atlanta.

My trip this weekend to Kansas City for Walk for PKD training for the weekend and this isn’t the most opportune time for me or the family, most obviously.

But raising awareness about PKD and money for research is really important to our family. It’s one of those things that I see as a non-negotiable. It’s important for the kids to see our family doing something that helps research progress. One day, I believe, when they are old enough to understand the concept of working on something for the greater good – the world beyond our world – they will be more inclined to be advocates.

Timing for this trip? Not so great. Reason for the trip? Two cute kids and a bunch more just like them.

I have a post for Trauma Tuesdays, but I have to cut what I am copying from the book because the chapter I am covering is about healing trauma and the story/example is long, long. It’s good though and relates to the steps of helping your child heal. So I have to figure out a way to tell Sammy’s story without just copying the whole thing and I didn’t have the brain power because this schedule was on my mind a bit…

Starting on Friday

- My flight leaves at 1:30 to Kansas City and Walk for PKD (coming to a city near you this fall) training begins.

- Julian has to take my nephew to an appointment at 2:00 for me.

- Which is why the BFF has to do her first in-person school pick up duty ALONE. WITH THE CHILDREN. Which makes me giggle a little bit because when she was on the other side of the country she worried about having this happen if she moved here. And well, she’s been here a little over a month so I think I’ve waited enough to use her, right?

- Julian has to drop off the nephew at another appointment at 4:00 in a different location.

- Julian has to pick up Gage from the BFF and take him camping overnight with like a zillion other scouting boys.Where, if I were there would be laughing my ass off at him in his scouting uniform. Because it’s kinda funny and creepy.

- The BFF has to keep the Quinnlin until my truly unbelievable, flexible and agreeable med-knowing sister (She’s a nurse you know!) to watch the Quinnlin overnight and be here for the nephew, too.

- Saturday (on Max’s Birthday! Happy Birthday Max!) she will do whatever with Quinnlin.

- Saturday Julian and Gage will arrive home.

- Sunday (early) Julian will leave for a long business trip.

- The nurse sister will be here until 2:00. I don’t even get to see her this weekend.

- At which time, another BF will take over (Kathy aka Cappy) and watch the kids until I get home off a flight Sunday night.

- They have to feed the dog, too. Luckily the nephew will walk the dog.

- Monday I have a Kidney Stone Watch ‘09 x-ray (wherein I hope I do not break the x-ray machine) to figure out what procedure “we” want to do. And by the way, they want to do it when Julian is traveling next week. I know, awesome, right? Because my life won’t be busy enough with Gage’s two mental appointments, Gage’s CRCT testing (and his predictable going bonkers about it), helping my nephew with his commitments and my mom gone on vacay (how could she leave me at a time like this?), and Julian gone (someone in the fam has to be working!). And oh yeah, I HAVE TO HAVE A KIDNEY STONE THAT IS LODGED IN MY URETER FORECIBLY REMOVED. I’m serious about praying to the kidney gods and begging for mercy while simultaneously offering my firstborn.

I would cry if it wasn’t so completely ridiculous. In fact, since I am not crying in the corner somewhere, don’t you think that makes me a little crazy?

A couple of weeks ago I had a little kidney stone attack.

My very attractive urologist  spoke of how “we” were going to wait a little bit but that he was pretty sure it wouldn’t go out on its own because the little jewel is the size of a pretty little 7mm bead.

This morning while “we” were checking on it by xray (and by xray I mean to say that the x ray machine wasn’t developing properly and they were going to send me away in order for “us” to do it later in the day or at a faraway office) and then I had a little mini breakdown.

Yes, yes I did. And I quite effectively pulled the other kidney card. The one where I blatantly use my kids’ kidney disease to make a point.

I told the nurse that I didn’t have time to come back or go to another location because you see, I have important things to do like WORK and WORK ON MY DAUGHTER’S LIFE SAVING SURGERY and all. And that if I didn’t get the xray I didn’t really need to see the doctor BECAUSE WE WERE GOING TO BE DISCUSSING THE X RAY and where the stone currently is residing. There might have even been a little tear or two thrown in there with “I know it’s not your fault.”

And it worked.

She took the x ray and had it developed when it was fixed and the doctor just called. It’s moved 2 inches south but he doesn’t think it will find its way out of the ureter because well, those stones are pesky little things, especially if they are the size of a jewelry bead.

So they want to do lithotripsy. Only the office close to me does it on Fridays and I am traveling the next two Fridays for the PKD Foundation – one for Walk for PKD training and one for a Board of Trustees meeting. So he may want to do it next Wednesday.

I know, sounds perfect, doesn’t it? When Jody, Gage’s donor, heard that the xray machine was broken, she asked me if I broke it. She was sure that all of the Mutant Family Kidney Karma was leaping out into the world of medical equipment now. That we are someway responsible for all things broken and not working that are anyway related to kidneys.

Seems possible, right?

Because I’m just saying…you probably don’t want to drop by your house, or let anyone in my family touch you, your toilet.