Friday, October 21, 2011

Liver Transplant Donor Application Update

I have some important news to share.  All blood types can now apply to be a living liver donor towards our baby.  Previously only B or O could apply, and they are now opening it up to A and AB donors.  Positive/negative blood type does not matter. This is called "ABO incompatible matching", and is not typically done.  Toronto has done it with adults, but never with children. 

When we met with the transplant team a couple of weeks ago, they had mentioned that they were going to add in the possibility of using ABO incompatible livers from cadavers if they came in to bring up the odds of finding a liver.  This is only done in rare cases.  Our next question to them automatically became, "If you are willing to do that, what about incompatible blood type living donors?"  They mentioned that they had not done this at Sick Kids before, but would talk it over with the living donor co-ordinators at Toronto General as well as the main surgeon (who was in surgery during our last meeting.)

I received an email today saying that it had been approved, and if we knew of anyone with the other blood types who would be interested in applying that they could.  Healthy, ages 18-60, in normal weight range. 

This is a link to the Liver Donation Manual.  There are a few things in it that don't apply to our situation - like the fact that normally they don't look at potential donors until the person is on the transplant list.  Since baby will be on the list immediately after birth, they are looking at the possibilities of screening donors now.  It's a very detailed document about the procedure!

Finally, here is a link to the Donor Health History Application Form. Where it asks for the recipients name, we are using "Baby Boy Babcock" for now, and he will be at Sick Kids. If you need any more info let me know, and I'll give you the number for the living donor transplant co-ordinator at Toronto General Hospital who looks after all this, and answers questions for those considering the process.

Applications get sent to:

Toronto General Hospital
Living Donor Assessment Office
585 University Avenue
NCSB-12C 1217
Toronto, ON M5G 2N2
Fax 416-340-3097

Wednesday, October 12, 2011

Meetings with Transplant & Social Work

I realized I never posted about our meetings with liver transplant and social work last week.

We were supposed to meet with two of the liver transplant surgeons, along with our co-ordinator.  One of the surgeons was unable to meet, because they had a cadaver liver transplant that day, which of course, you can't plan ahead of time more than a few hours!  During our meeting, our transplant co-ordinator got a page, and said "Part of my job is going to pick up the organs when they are available, and I need to leave to go get one."  They knew it was going to be ready for her to pick up soon, since it was for the surgery that the surgeon was called into.  Off she went, changed into her scrubs, and went across to one of the other nearby hospitals to return with a liver!  Not a job responsibility I would EVER want.  It made for interesting conversation when she returned.  She never takes the street, always takes the tunnel system, and always brings a group of people with her.  She brought 4 this time.  The surgery they did that day was number 25 for the year at Sick Kids.  They typically do between 20 and 25 liver transplants a year, but apparently this year has been busier than normal.  I suspect that part of the reason they are busier is because urea cycle disorders like ours are being treated much more often now with liver transplant, particularly at young ages. They know it works as a cure, and with each one the surgeons perform, their experience is growing. 

We also met with the liver transplant social worker, who was GREAT.  She will apply to Ronald McDonald House for us starting on Oct 31, and will phone in each day over the first few days to keep us on the waiting list since we will be busy.  Hopefully we get in sooner than later, because staying downtown Toronto is expensive.  Worst comes to worst, I can commute it until then, but the 2.5 hour commute each way won't be fun.  She is also going to apply to the David Foster Foundation for us, although nothing is guaranteed.  This foundation helps families with children undergoing transplant with some of the many extra expenses that come up.

We told her that we weren't preparing in any way for the baby to come home.  We are taking everything day by day.  If baby comes home, we will do a major shopping spree at the time!  She told us that in typical Jewish culture, there are no baby showers ahead of time, and nothing is bought until the baby is coming home from the hospital.  I did not know this, but apparently we can say we're following Jewish tradition. :)

I'm off to Toronto again in the morning...  I'm hoping it will be a fairly quick afternoon of just a couple appointments, and that I can make the 4:30 bus back home...otherwise I have to wait around until the 7:30pm bus. I have ultrasound and obstetrician appointments scheduled, but I seem to always end up with extra appointments while I'm there.  One of the things I will be asking for is a doctors note/prescription for a breast pump.  Since baby can't drink any breastmilk until after transplant, I'm going to see if I can pump.  Don't know if I can, but we'll see.  With a doctors note that it is medically needed, my work insurance company will pay up to $200 towards purchase, or 3 months of pump rental.  I will purchase one, probably from Sick Kids hospital.  Ultrasound will also give an estimate of how big the baby currently is.  Two weeks ago, they estimated 4lbs 13oz at the time.

I set up a Facebook page that tells about how we are looking for a donor for the liver.  If you search "Baby Boy Babcock" on Facebook you will find it, or you can find it Right Here.  Feel free to join the group and share the link.  I know that we've had a few people apply, but I don't know if any of them will be considered successful matches.

Thursday, October 6, 2011

Random Liver Transplant Facts

 Some random facts about liver transplant:
  • There are typically between 20 and 30 children on the waiting list for a liver at a time just at Toronto Sick Kids hospital. Toronto and London are the two transplant centres in Ontario.

  • No cadaver livers came into Sick Kids hospital during July or August this year, but two became available this past weekend resulting in transplants (including the other OTC case I wrote about earlier). The waiting period for a cadaver liver is very random.

  • The first living donor transplant in Toronto was performed in 1996.

  • Toronto is the largest, most experienced living donor transplant centre in North America.

  • The list for people needing transplants in Ontario is maintained by the Trillium Gift of Life program.  They maintain a publicly accessible list that tells you how many people in Ontario are on the waiting list for organs at a time.  At time of writing this, there are 235 people in Ontario waiting for a liver transplant (both adults and children).  You can check the current number of people on the list here.

Sunday, October 2, 2011

This Past Week

This past week was jam packed full with appointments. 

On Monday, I saw my internist, who made an appt for me for the day before induction to have a PICC line inserted in me since they will be taking blood/monitoring me every 4 -6 hours starting when I go in labour until 36 hours after I deliver.  Since the PICC line has both an in/out valve it will also be used to give me one of the two IV's that will be used during labour.  One is a drug for the baby, called Ammunol.  The thought is that by giving it to me, it will go through the placenta and go to the baby, bringing down any potential high ammonia levels at birth.  The second IV will be one of glucose for me, in order to keep my body regulated, give me calories, and not have my ammonia levels rise during labour and delivery. 

I also saw my dietitian.  A couple weeks ago I was prescribed citrulline, which is an amino acid, for the very first time.  I cannot manage to take the full dose of after contacting the doctors, they said to 1/2 or 1/4 the dose just to get some in.  Citrulline helps with the process of properly turning the ammonia into urea, which with OTC the body often does not properly do.  My levels were extremely low.  I can only manage to take about a 1/4 of the dose they prescribed without immediately throwing up.  After reporting this, I have now also been prescribed arginine, another amino acid that helps convert into citrulline.  I will pick this up from the Sick Kids pharmacy tomorrow.

These aren't your normal supplements you can pick up at any drug store, and I feel fortunate that they are financially covered since they are quite expensive.

My third appt on Monday was with metabolic genetics at Sick Kids, who wanted to go over the plan for baby in more detail with me that day.  I also met with the genetic counsellor there, who was great.

At the metabolics clinic I ran into the other mom who has a baby with OTC as well.  I had met her a few weeks ago.  As of Monday baby was doing well at home, but this weekend I got a quick message that they found a liver for the baby!  As you probably know, a liver transplant is the "cure" for the OTC deficiency.  I'm assuming it is a cadaveric liver, and I'm also assuming that the baby is in surgery getting transplant this weekend.  I could be wrong.  I'm looking forward to hearing the updates.  Baby is currently 4 months old.  Perhaps I'll run into her again when I'm back at Sick Kids tomorrow.

I also had appts on Wed and Thurs, and instead of doing a ridiculous 2.5-3 hour drive back home in rush hour, only to do it back again the next morning, we took our daughter out of school for those days, and stayed overnight in a hotel.

On Wed, I met with anaesthesiology, which was a waste of time.  The other doctors involved really wanted me to to meet with them as a "just in case" scenario.  I've had two normal births without drugs in the past, and don't expect to need them this time.  Doctor was confused as to why I was there.  I told him it was as a "just in case" that the other doctors wanted me to meet with him.  Quick appt.  Yes, my back is fine for an epidural if needed, and my throat is fine if I needed to be intubated in an emergency.  Um. Great.

We also met with Mount Sinai's neo-natal department, which was a really good meeting.  (It made up for the one with anaesthesia!)  Very respectful, they will allow us to take time with baby without being rushed immediately after birth in order to hold, and take pictures.  In case Sick Kids PICU does not have any rooms available, they have ordered all the meds for baby on Mount Sinai's side as well, and will look after him in NICU until a room becomes available across the road.  When a room becomes available, they will be in charge of transporting baby from one hospital to the other (through the underground tunnel).

Then we met with our nurse co-ordinator who is great.  She has put all the stuff that needs to be done into a document for the nurses who will be in labour and delivery.  She liked the fact that the book our daughter had with her was HER very favorite book series from when she was a teenager. :)

On Wed afternoon after all these appts, we headed out to venture the subway.  It's been at least 15 years since I've been on Toronto subway!  We went to the ROM which has free admission Wed afternoons from 3:30 to 5:30pm.  You'd have to spend a month of going during their free admission times to see half of what is there!

On Thursday I had an ultrasound and met with my obstetrician.  Baby is measuring at 4lbs 13oz, although I take that measurement with a grain of salt, since I had an u/s the morning my daughter was born, and they said she'd be between 7.5 and 8 lbs, and she was only 6lbs 6oz.  They base the "weight" on length of bones...  My babies are long, but thin/skinny, and aren't as chubby as most babies...therefore less weight. this point I've gained 3 lbs, and baby himself weighs more than that.

Tomorrow we head back yet again, to meet with the liver transplant team at Sick Kids, as well as the social worker from liver transplant.  We've met with them once before, but tomorrow they will go through the official surgical risks discussion with us, in case a liver becomes available really quickly while I am in the hospital.  This way it is done.  The social worker is our contact to get approval into Ronald McDonald House.  You can't get in at all without a recommendation from a social worker.  We'll see if she can help us out with finding funding for anything else too, eg travel and food expenses, or after school child care costs for our daughter since I will be in Toronto. Child care alone is an extra $300/month that we wouldn't have otherwise incurred, and staying at Ronald McDonald House is not free runs $450/month ($15/day).