A New Journey

It's early, still dark outside, as we wake the kids up, gather all of their stuff and pack the car to drop them off at my moms before we get on the road for a two day visit with Mt. Sinai. In the car we talk a little about Philip and Danny, our nerves, (OK my nerves) and this new journey we're about to start. But it's mostly silent, both of us knowing the importance of the next two days and how the results will impact our lives, and not knowing what the many appointments ahead would hold. We just know that while Philip is still fairly healthy, he still has a life threatening illness. His PELD score does not reflect the risk he faces waiting on the list. And with his low score he can wait years to be called for a cadaveric liver. Do we wait for the call and risk him having an even worse GI bleed and get sicker or do we try to be donors ourselves and start to hopefully move forward with good health? The itching has gone from bad to worse. So it really was a no brainer for us. Move forward with Living Donation. We decided to have Dan try first because Philip is very attached to me and we think he may fare better in recovery if I am with him.

Living Donation is handled by a completely separate team than Philip's. So Wednesday started by meeting with the Transplant Nurse Coordinator, followed by Social Work, then a Nutritionist, and Financial Coordinator. And Lastly 16 vials of bloodwork. They test for everything. Their main concern is the health of the donor. If there is any little thing that can increase the risk of complications, they will rule you out as a donor. The team we met with seems very caring and attentive to all our needs. They are very strict about confidentially so I was not allowed in some of the appointments like Social Work. They want to make sure the donor is not being pressured into donating and that Philip is not paying him off in matchbox cars...lol
Thursday morning started with a chest X-ray, then MRI. After that we met with the surgeon who would do Dan's surgery, then we met with the hepatologist who will follow the donors care after the transplant. Finally Dan had to meet with the psychiatrist.
We will know on Monday if Dan is a match. If not, I will plan to go ahead and be tested next.

There was so much information to take in it was head spinning. They really want to hit home that there is no medical benefit to the donor. You could in fact be putting yourself in a position of worsening your health. Being that Dan's job requires physical activity they said he could potentially be out of work for 3 months and then go back slowly to full activity at work. Your whole body's energy will be going to regenerate the liver so the donor will be very tired at first, not eating the same, pain. They said people can actually feel their liver growing back, with little twinges here and there. It's pretty amazing stuff, but is pretty terrifying at the same time.
For me at least. Dan seems to be fine with the whole thing. A little nervous but not a basket case like me. What if we go through with the transplant and Philip gets worse? What if Dan has a complication? What is Philip has a complication? How will I deal with the 2 of them in the hospital? How is Danny going to deal with having his whole family gone for a couple of weeks? Not just one of us but ALL of us? Poor little guy. I know he will be with family and be fine but it has to have some effect on him. I am going to contact social work to see if they have any resources for him.
Just endless questions in my head. But we've faced the last 2 years head on, what choice do you have really when faced with a situation like ours, and we'll keep facing it head on, whatever comes. Keep  smiling and trying to find the humor in things. And knowing all of the support we have from family and friends will carry us through any obstacle we face.

This is a picture Dan saw as soon as he walked in the office. Could it be a sign...?