Posted by: craig and melissa | January 31, 2013

A New Chapter

From C:

‘Your son will need a kidney transplant.’

It seems like a lifetime ago that we heard these words.  So much so that I can’t even remember exactly when Melissa and I were told this prophecy during the five weeks Connor was in the NICU two and a half years ago.  It’s like when Peter was told that he would deny Christ three times before the rooster crowed.  He didn’t want to believe it, but it was an inevitable event.  Much like Peter, we logged those words away deep within the recesses of our minds.  You don’t want to think about it.  You don’t even want to begin to comprehend what all of that will mean.

There was an unsaid promise between Melissa and I that we would take each day one at a time and to not dread of the future.  Without knowing exactly the ‘when,’ what was the point?  With something of that magnitude not at the forefront of your mind, the dread can come back and land on you like a ton of bricks when the time finally comes to stare the right in the face.

Since early December, we knew that we would finally be taking on the issue of transplant in very realistic terms.  Connor’s lab numbers have been on a steady decline since the summer, and his renal doctor lowered his kidney function to somewhere between 25-29% (Stage 4 of 5, where Stage 5 kidney disease is less than 15% function and requires dialysis).  We heard those fateful words once again – ‘kidney transplant.’  It was time to start the planning.

Today was the day Melissa and I met with Connor’s transplant team – the people who will be responsible for guiding him through the next phase/chapter of his life.  The team consists of a transplant coordinator (Shelley), the transplant surgeon (Dr. Cronin), the transplant pharmacist (Dave), a social worker, a child psychologist, a nutritionist (Linda), and his renal doctor (Dr. Pais).  We met with everyone but the surgeon and Dr. Pais.  We will meet with the surgeon next week for a ‘one on one’ session.

To say we were overwhelmed with information would be an understatement.  It felt like Melissa was pregnant with Connor again, and we were meeting the NICU team that would help bring Connor into this world.  We have three folders stuffed with packets, pamphlets, notes, charts and business cards to all sort out over the next few weeks.  It was a surreal day.  But like most days that take us on this crazy ride, we just take a deep breath, look at each other, and take that necessary step forward.

There are a lot of details to sort out between the two of us, and I can tell you that it would take pages on here to fill in every detail.  So, here’s the ‘greatest hits’ version of what we learned today:

– Connor’s kidney function has declined to a Stage 4 level.  That means his team of renal doctors want to begin the process of transplant to bypass dialysis altogether.  This is a favorable and advantageous thing to do, as children and dialysis don’t go well together.

– The search for living donors has begun (special comment on this later).  Connor will also be put on a deceased donor list to accumulate time as a precautionary measure in case a living donor does not work out.

– The process will take several months to sift through potential donors.  It’s a pretty involved screening process to make sure that Connor gets the healthiest kidney possible and to make sure the donor comes out of this whole thing healthy as well.

– We do not know the exact date of when the transplant will take place.  But, we are looking at something after May – whether the procedure is a living or deceased one.

– The new kidney will last 15-20 years (live donor) and slightly less from a deceased donor.  A live donor is preferred because of this and because it is a much more ‘controlled’ situation.

– Once the surgery takes place, Connor will be taking immunosuppressant drugs for the rest of his life so his body won’t reject the donated kidney and future kidneys.

– His hospital stay will last about a week post surgery and will need to stay home for at least a solid month to three months.  This will help him avoid any contact with potential viruses or bacteria while he is most susceptible to those things.  He will also go to the transplant clinic three times a week for the first month for follow-ups.  It then becomes weekly for a while after that and than every three months after that.  This is to take blood work and help ensure that his body does not reject the kidney.

– Once the transplant occurs, we can expect almost immediate results in the improvement of his life.  His appetite will become much greater than it was (YAY!!!), and he will have way more energy than he has now (as hard as that is to believe with this two year old) because his new kidney is getting rid of a ton more toxins than his old one.  This will allow his body to grow and develop the way it desperately needs to.  This kid is still off the charts in size – both weight and height.

That’s about it to share for now.  Now, about that live donor part…

Yes we are currently seeking a live donor for Connor.  Melissa and I will be screened to see if we are a match.  The search will almost certainly reach beyond us.  If you feel compelled that you need to help this little man in this way, and want to be screened as a potential donor, please email Melissa or myself.  We understand that donating an organ is a huge sacrifice for anyone, and it does not fall lightly upon us the weight of having to ask something so significant as donating a kidney to our son.  We’ve decided to go the living donor route because of the longevity benefits from a living kidney.  This is a moral choice for us as well:  Over 100,000 people in the US need a kidney transplant and only 25,000 receive one per year from the deceased donor list.  We do not want to take an opportunity away from someone who has been suffering from kidney disease by opting for a deceased donor if a live donor is out there for Connor.  Some may view this differently, but we will only go the route of a deceased donor if no live donor can be found.  There are more reasons why the live donor is advantageous at this point, but it is on the biological level and we don’t want to bog folks down with those details.  The bottom line is that we believe this to be the best route for our boy.

So please, take a moment and consider if you are willing to donate to Connor.  Don’t assume that you don’t qualify as a donor just because you may not be family.  A genetic link between donor and recipient, although beneficial, is not necessarily required.  This is largely due to improved anti-rejection medications.  In state, out of state – it’s all the same.  So please, take some time and think about it.  We have tons of information to share with you if you are interested and have questions (which I’m sure all of you do) regarding procedures, screenings, travel, insurance, etc.

We love each and every one of you that subscribe to this blog and will love you no less if this is not the thing for you.  This is a very difficult and personal choice and we respect that choice.

The only thing that we can ever ask from any of you is the thing we’ve asked from the beginning – Keep praying, keep hoping, and keep loving.

Blessings to you all.

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Responses

  1. Hello Craig, Melissa and Connor aka: “Stud Muffin”.

    I am continuing to send prayers, positive energy and Warm Sunshine to you all!
    Please know is you need anything please share how I can help you.

    I am wondering if you would like to network with a family whose daughter had a
    Kidney transplant @ CHW?
    Her dad was her kidney match and he donated his kidney to her.
    She was on home dialysis until “The Transplant team” felt it was the best time for her
    to get the transplant.
    I remember praying for her to pee on her own after her surgery….WOW
    It is such an emotional rollercoaster ride.

    If you would like to talk to them they are open to sharing information and support as you need.
    Please share if you would like to connect with them or not.
    I do not want you to feel any “pressure” from me regarding this; I was sharing this
    to help in a supportive way.

    Hugs to you all!
    And especially the “Studmuffin”

    Warmly,
    Lisa

    Lisa Ann Brock RN BSN IBCLC RLC
    Lactation Management Service
    Children’s Hospital of Wisconsin
    #414-266-1757
    lbrock@chw.org


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