Dear Potential Live Donors…Four of You and More in the Wings,

I cannot express to you how much it means to me that you would even consider being a donor and go through the personal invasion of privacy questionnaire let alone be willing to go through testing and surgery to donate an organ that has been perfectly happy in your body.

I sense that you have an inkling of what it means because you see Gage living a life and you know what he means to me. You know that he is part of my soul and part of the soul of this family and life without him would be unbearable. To know that you have the chance to give him a "normal" life with a new kidney is so overwhelming. I can’t imagine what it will feel like to know that a friend, that I likely met through God’s will at a small church we would come to attend after years of passing by it on the street, or feeling a strong connection after meeting through a mutual friend, or even meeting your wife early in my career, would help my son live. And the crazy thing about it is that had not all of the events in all of our lives met up with God’s grace, knowledge and intervention this would not be a possibility. It’s a powerful gift you are offering and a humbling one. Even before transplant occurs the power of the offer is changing me. Profoundly. Spiritually.

See…with the helplessness that has come with the knowledge that as parents we are unable to donate has come a wavering in my faith. What has happened during your willingness to donate a kidney is the renewal of my hope. I have hope again. For the first time in weeks there’s a stronger belief in my heart that Gage will survive and live the life he deserves. 

I thank you and I love you. Even before this incredible offer. But I hope you already knew that.

Julia

Proud, tired mom to a wild boy who has not let dialysis stop him one tiny little bit.

I was giving Gage his new shot using the cool medicine putter inner recently and Quinn said:

"Will I get that shot too?" (smiling)

"Well, maybe Quinn but probably not for a long time."

"When I go on dialysis?" (clapping hands and excitingly talking)

"Well, maybe honey, but we are hoping you won’t need dialysis. Maybe you will get a kidney before you need dialysis." (with a nuturing mothering smile)

"What?! I want to go on dialysis! When do I get to go on dialysis?!!"

I admit, I just let her think she is going to get to do dialysis too. Sometimes just going with the flow is better than fighting it, you know? I mean, we have to pick our battles with her. There’s no sense in getting her upset by telling her that NO! we don’t want you on dialysis.

Now that’s just screwed up.

We’re becoming fixtures at Children’s Hospital. That is both good and bad. Gage knows where we can park the car, he can navigate all of the elevators and get to the dialysis floor. Normally Gage is running off energy that has amassed at school. He darts in and out of hallway nooks running ahead of me and waits for me to pass him while he jumps out thinking I will be surprised every time.  He’s comfortable.

No one thinks he is sick as he jumps to hit signs that are high on the walls showing directions to this or that. He runs full steam ahead to dialysis. I am not going full steam ahead to dialysis. I am walking slowly to dialysis. I carry his bag, my bag with my computer and my very large and heavy calendar. I’m unable to use a PDA or a small pocket calendar; it has to do with how I can’t look at a whole month at a time to see what is ahead of me in one glance. I have always needed a big, bulky calendar. It’s a curse.

Sorry. Tangent.

Anyway…as we arrive at the top floor I hope that they are running on schedule. Because I will tell you that "5 minutes" in hospital time is at least triple outside of the walls of the hospital. Our watches are different. Five minutes means 15 and 15 minutes means about 45. I know there are emergencies. But still. It’s irritating. Gage’s life is disrupted enough. And us leaving dialysis up to an hour late on any given night is the difference in us eating together as a family or Gage having a small amount down time at home before bedtime.  His recent comment to me through tears on the way to karate was "I don’t get to play at home anymore!"

I try to work when I am waiting at CH but aside from checking email and making a couple of calls to keep work flowing, it is difficult. It’s not that I can’t find a quiet corner, or that I don’t have the time. Gage is literally attached to a machine for 3+ hours. So I have time. It’s the mental energy I don’t have. After checking him out of school and making our journey (which by all standards I have no right to complain about – we are 10 miles from our children’s hospital) I change from Working Mom to Mommy. And it’s hard to enter back into Working Mom mode.

When I enter through those doors, I am no longer advertising account executive, business owner, post office drop lady or accountant: I am Mommy. There is a mental shift somewhere on the drive over. All the talk is about school and what day it is and how many days until dialysis again, and how long it will take to get there, and what to drink before dialysis, and are we running late, and do I have kitty and blankie, and we hope he doesn’t get the corner chair, because everyone opens that cabinet and he can’t see the TV and it bothers him and he hates that chair. Hates. The Chair. In That Corner. There are, let’s see, approximately no times that we don’t discuss all of those items on the way to dialysis.

The thing is; I love my job. The account executive one for which I am paid a salary. I love that my job allowed me the ability to freelance and start our business and work around our kids’ schedules. I love my clients. I love the work I get to do for them and I have the best of both worlds when I get to work at something I have a passion for and also have lunch with my child who is ear-to-ear grinning happy that I am there. And then later in the day I get to get notes that say "Today Mommy came to lunch with me it was very fun today. Mommy+Gage"

So, even though I can work, I don’t want to because when I enter that hospital I no longer feel like a business owner. I’m a Mommy who wants everything to run on schedule that day. And who wants her child to survive this and also is greedy enough to want her child to cope well. To cope well enough to have a full life of possibilities. I’m just like every other parent in that hospital.

That being said, it’s difficult to concentrate on work.

I’ve had trouble letting go and letting Julian, who has offered numerous times, to take Gage to dialysis. I mean really, it’s not that difficult to pick up the boy and get him there. But I will say that when we enter through the doors and my 7 year old boy becomes a patient, I become only Mommy. Not working Mom. Not wife, sister or daughter. And I’m okay with that. I have to make it work with all of the other parts of me. But for now, being Mommy rules.

Life at a Children’s Hospital is like walking into a self-contained world, where time moves at its own speed and families in medical limbo are welcomed into waiting rooms with warm smiles. Knowing, understanding, compassionate smiles. And one day, their scared faces will transform to show that they have become used to life inside those walls and they will welcome another parent sitting across from them. It’s how the cycle works. It’s a reality. My reality.

I’m thankful for many things today. Julian, the kids, family, you know, all the basics. And while I’m working on a list of 100 things I’m thankful for I can’t let the day pass without acknowledging that I am truly thankful for dialysis. I hate that there is a need for dialysis.

But I believe it is keeping Gage alive.

And I’m thankful that if Gage and Quinn have a disease it’s one that can be treated with dialysis.

With over 72,000 people looking for a kidney and roughly only 16,000 a year getting one, this is a story to be celebrated. In fact, live donors should be celebrated more. The process of donating a kidney should be easier. A literal red carpet should be rolled out for live donors. More on all of that later.

“It has been a privilege to help Ms. Rothstein fully realize her altruism by placing her into a domino transplant where her gift has made five transplants possible that would not have occurred,” says Robert Montgomery, director of the Incompatible Kidney Transplant Program, chief of the Division of Transplantation, and director of the Comprehesive Treatment Center at Hopkins. 

In a paper published last August in the British journal Lancet, Montgomery laid out the blueprint for a wider system of pairing altruistic donors and incompatible recipient pairs to greatly increase the number of available organs and better serve the interests of both transplant donors and recipients.

Without a universal system of this kind in place, Montgomery says altruistic donors often end up on an Internet donation site or are subject to inconsistent allocation systems in which only a single patient benefits. For example, in some cases, the kidney goes to a patient deemed to have the best chance for long-term survival, while in others, the organ is given to a patient in greatest need or to someone at the top of the UNOS waiting list regardless of predicted outcome or need. 

“With domino paired donation, all three of these ethical tenets are satisfied,” says Montgomery. “The likelihood of a good outcome is increased by spreading the risk of recipient graft loss across more people. The neediest are served, since in many cases incompatible donor-recipient pools have a high proportion of patients who are hard to match. And fairness is served because the last paired donor’s kidney in the chain is allocated to the next compatible patient on the deceased donor waiting list.”

All five donor surgeries began simultaneously at 7:15 a.m. and were finished at 11 a.m. The four donor kidneys remained in the same operating rooms, which were cleaned and readied for the intended recipients. One kidney was taken to another room.  The recipients’ procedures began at 1 p.m. and were finished at 5:15 p.m. All the donors were released from the hospital by Nov. 17, and the recipients should be released by Nov. 20.

Each of the donors will be monitored for the remainder of their lives to make sure their remaining kidney continues to function properly. The recipients have been placed on medications that will help insure that they won’t reject the kidney. They will be evaluated weekly for the first six weeks, then monthly, with the frequency of hospital visits slowly tapering off over time. The average expected life of a live donor kidney is 18 to 20 years. The recipients had lost the use of their kidneys for a variety of reasons, including blood clots, end-stage renal disease and a motor vehicle accident.

Nearly 100 medical professionals were instrumental in making this complex series of transplants possible, including immunogeneticists, anesthesiologists, operating room nures, nephrologists, transfusion medicine physicians, critical care doctors, nurse coordinators, technicians, social workers, psychologists, pharmacists, financial coordinators and administrative support people.

http://www.hopkinsmedicine.org/Press_releases/2006/Transplant/11_20_06.html

With Auntie Tammy. She also happens to be my older sister. Although she swears that people think she is younger. We’ll let her believe that…

The sister decided to come into town a couple of weeks ago to help out. Julian was traveling for a week and her coming in was a nice diversion we all needed. 

This photo is right before the three of them and the dog, Lucy went for a little stroll. And Lucy is the best dog in the world (IP) and I am not kidding not one little bit and we adopted her from a shelter and we can’t believe that someone would give her up but they did and we’re so, so lucky. Whew. And yes, Gage is wearing a Santa hat. Don’t ask. And yes, Quinn looks very stylish in her running ensemble. Don’t you think?

Anyway, thanks Auntie. We had fun. We love you.

And thanks for cleaning my fridge and kitchen, including the stepped on crud in the corners of the base boards. That must have really been some nice time off for you.

Three people who are willing to be tested as possible donors for Gage have gotten in their paperwork to the transplant team. That is the first step in a very long process.

In all fairness to potential donor #4 they asked for the package well after the others got theirs. This person learned that we were still looking for a couple of people and decided, rather quickly and surprisingly, to be considered. This #4 person came – seriously – out of left field.

So, the process is churning ever so slowly. This is not something that moves faster than it does. And really, it’d be a little creepy if I started calling Potential Donors about their schedules. As Gage’s parents we called and called and stayed on top of the transplant team and testing appointments and it moved fast (yes, 7 weeks is fast I’m told) for us.

Am still carrying the kidney beeper and planning a trip the 1st week out of the year. I’m mildly nervous about being 4 hours away by plane with the slim possibility of us getting "the call" so I’m taking the leap of faith that it won’t come during those particular 5 days.

I do know one thing: if I don’t book those tickets, there’s no way we’ll get a call.

There have been some complaints that we parents aren’t pictured on our Photo Fun Friday posts. Here’s a picture from the recent Walk for PKD that has us in our matching t-shirts.  I think we also look decent. Except maybe I could have spent a few more minutes on my hair.

Our t-shirts say "Got Kidneys? Share a Spare!" We thought that was very clever.

This was a hard day on Gage. He’d not been feeling well. For the first time – ever – he’d not been able to run in the race. He was pulled for the entire mile in a wagon. Just the day before we had labs drawn and learned his kidney function was dangerously low. I knew that our doctor would want to start dialysis. I knew it and yet I didn’t believe it until Gage was being rolled in to have a catheter put in 4 days later. I’ve learned that my heart has the capacity to bear more sadness. As each phase of this disease progresses we accept more and move on. Partly because the kids demand it and partly because it helps the kids accept their own next step in the process. If we’re not comfortable with what is happening, the kids have more anxiety and us adding to their anxiety is not acceptable. They have to work through enough without worrying why we’re worrying.

So, there. Back to cute kid photos next Friday.

If you are here by way of the PKD Foundation, welcome. I was hoping that I could write something witty to welcome you but currently I’ve got nothing. No wit available at this hour.

Our basic family PKD story and how we ended up where we are can be found on the right hand side bar on the ABOUT page. I think it’s all there but feel free to email me questions or post a comment to ask a question. It’s fair to say we’re pretty open about our story.

Just to get this out of the way…I am a horrible mis-user of commas and those ellipsis dots. I like to use my share of parentheses very well too. And I’ve been known to throw in a couple of dashes just because I like them. I pretty much write like I talk (lots of pauses) so keep that in mind if you are an English teacher or a professional proof reader.

Come on in. We’re glad you stopped by.

Anonymous poses this question about the last post:

It is interesting that a live donor is so much better. Considering we are all encouraged to be organ donors at death. I thought donation of organs had to be very soon after death to be viable. I wonder what the difference is?

It’s my understanding that a donation from a live donor lasts a little bit longer than a kidney transplanted from a deceased donor. There are differing opinions on this. For a near perfect deceased match and a good living donor donation I understand them to be almost equal. The center our kids are at will not transplant a kidney that has been without a blood source for more than 24 hours. With children who need a transplant an extra 4-7 years of the life of a kidney is important because they are already at a disadvantage by their age in the knowledge that they will require another transplant (or more) in the future. Each time they are transplanted or receive blood products they decrease the pool of people they can get kidneys from in the future.

Deceased donors are vital. The kidney is the only organ that has an option for treatment if it fails: dialysis. We are very grateful for this option. It is not ideal though. It only adds about 15% function. There’s a quality of life issue: fatigue, regulation of many levels in the body, time away from jobs, family, social interaction (for my child anyway – he literally has no playmates right now), etc. Don’t get me wrong. I believe it is saving our son’s life and we are thankful and we deal with the issues relating to dialysis. But it is a temporary solution (years for some people) that costs our government millions.

There still aren’t enough donations – living or non-living. With over 90,000 people on this list waiting for an organ and over 72,000 of them waiting for a kidney – even with a few years less life on a deceased donor kidney it is a beautiful gift of life – of quality of life that many, including us would be blessed to have.

I hope that Gage’s kidney will be from a living donor – not only because some statistics show that a living donation kidney is a bit better – but because I know people who are on dialysis or in renal failure or will be and it would be wonderful if that kidney that Gage wouldn’t need could give that quality of life to someone else.