Our Lazarus Moment

I can't believe the difference three days have made.  Scott is soooo much better then when he was admitted on Monday.  I have to admit, that on Monday and Tuesday I truly thought that our time with Scott was extremely limited.  It's amazing the difference four units of blood and restoring his electrolytes to a more normal level has made for Scott.  He is a different person than he was on Monday.  I feel we witnessed a "Lazarus Moment"

The kidney specialist has been amazed at the progress Scott's kidneys have made over the last two days.  His levels are slowly returning to a "normal" level for him.  He wants to keep an eye on him for the next few days and not bring them back up to "normal" too fast.  Bringing them up too fast can also be hard for Scott's body to adjust to.  Slow and steady...

A comparison:

Sodium: (normal is 135-145, normal for Scott would be above 120)
Monday 107
Today 121

Potassium:  (normal is 3.5-5.0)
Monday 6.2
Today 4.4

Kidney function labs
Creatinine
Monday 4.08 (way too high)
Today 1.31 (still high, but getting closer to normal)

Scott is feeling better, is awake more, is rarely confused now, has more energy, is transfering in and out of bed now with little assist, and it is truly, truly miraculous.

As I mentioned early, on Tuesday Scott has some redness and warmth to his stump.  That evening he had a low grade fever.  IV antibiotics were started and since that time his leg has improved and he has not had a fever however they are concerned about a possible infection.  A CT scan was completed today on his stump and Scott had a fairly large collection of fluid.  This could be an infection, which is not what we want.  For now, they are watching and continuing the antibiotics.  He may requre his stump to be "opened up" for further evaluation.  I'm really hoping Scott can avoid this.

If Scott does have an infection and as long as he is on antibiotics (any antibiotics for any reason, for that matter) he has to be put on "hold" for a liver transplant.  He is not removed from the list, per say, but he would not be eligible for a liver during that time, even if a possible liver became available. In the past, Scott has had a very difficult time recovering from infections and has sometimes been on antibiotics for an extended period of time.  That's time we would rather have spent as an eligible candidate for a liver.  Please pray that Scott's leg can improve and that there is no infection.

A little more about Scott's liver. Starting two years ago when Scott was initially told he needed a liver transplant they began to monitor his MELD score (Model for end stage liver disease).  This is a calculation of lab values (bilirubin levels, creatinine (kidney function), and INR (blood clotting level)  that give us an idea how "sick" Scott's liver is. The MELD score can influence when and where on the transplant list patients are listed at. 

Two years ago, Scott's MELD score was usually around 17-19.  Certainly a sick liver, but not "sick enough" to be listed for a transplant.  (in the transplant world, you have to be pretty darn sick, to be listed).  We were told at our first consult with the transplant team that most patient are listed when their MELD score is around 25.  On Monday when Scott was admitted, his MELD score was 32. A score of 32 indicated he needed a liver quickly and would have been towards the "top" of the transplant list.

As his lab levels have returned to a more normal level over the past two days, his MELD score has improved.  His MELD score today is 25.  A score of 25 would put Scott in the "middle" of the transplant list.

I speak loosely about the "top, "middle" etc of the transplant list because it's not clear cut like that.  It doesn't matter if Scott is technically at the "top" of the list (he would need to be very sick for this to happen, like on Monday), he still has to have a donor that is a good "match" for him.  Donor livers may be available, but if they do not seem to be a good match for Scott (size, blood type etc) then they would obviously go to the next candidate who was a match, regardless of Scott being at the top. 

Obviously as Scott's MELD score changes--which it WILL (improves, worsens).  This will also change where he sits on the list.  Estimated time for patients at the "top of the list" for liver transplant is 6-12 weeks.  If your sitting in the middle it could take up to one year.  But we've been told that, Scott will and essentially it seems like he "has to" get worse, before he can have a good chance of getting a liver transplant.

The transplant physician said yesterday that out of all the patients that need a liver, roughly 3 out of 10 actually get to be listed for a transplant (again it's not easy to "make the list" in the first place and so many factors go into establishing if a patient is a candidate for liver transplant or not.  Scott has two things going for him to be listed--his young age and the fact that his liver failure was due to a genetic disease (Alpha One Anti Trypsin Deficiency) and not self inflicted (drinking, etc).

Out of those three patients that are listed on the transplant list 1 out of 3 will receive a liver.  Last year IMC did 27 liver transplants.

So as you can see, the road is going to be long and bumpy and it's not easy at all to "just get Scott a new liver" like we all want.  People are living longer and things that used to cause fatal injuries just don't as much anymore--like the transplant case worker said.  Car accidents that used to be fatal, people are now surviving.  Cars are safer, people are more aware with seat belts, medicine and the life saving capabilities have greatly improved.  All of these are absolutely amazing, wonderful, improvements for all of us, but in the donor world it means less donors while the amount of patients needing a liver doesn't decline at all.

I feel a litte crass talking about this like that because it truly breaks my heart to think about it in depth.  Someone will die, to save my brother.  I absolutely want my brother to live and there is no other way he can at this point without a liver transplant.  It's a hard thing to pray for-- that Scott will get a liver because it means someone else's life will end and some other family will be devastated.  That grief and sadness and loss of TIME we are so desperately trying to avoid, is what will happen to another family.   I have prayed that there is some family out there that will consider organ donation and that my brother could be the recipient. Then I feel awful about it. Again, it's bittersweet.

Part of me likes to think about Scott and his donor having a relationship before this earth.  That they knew each other, had this connection, and this person knew he would give the ultimate gift to my brother.  It's a nice thought. 

Jesus looked at them and said, "With man this is impossible, but with God all things are possible" Matthew 19:26