Tales of the Transplant

I abandoned this blog when I realized that I wasn't good at keeping it updated…and quite frankly Facebook was more fun.  In light of Erik's new "situation" I will start posting here again.  Hopefully everyone can stay updated and I won't have to remember who I talked to and who I didn't.  No one will be left out this way :)

I will try to keep it factual but let's face it, there is no way I can avoid slipping in entertaining yet potentially inappropriate commentary.  Don't judge and by all means don't be offended.  If you can't laugh at the tough stuff what can you laugh at really.  Some of you may already have most of this initial information.

Initially the updates will be minimal, as in there is not much to tell and the entire process will likely move far too slow for my tastes.  Patience, waiting on others and flexibility are not my finest qualities.  I'm not entirely sure I even possess those qualities.

The scoop:
Erik needs a kidney transplant.  Not today.  Probably not tomorrow.  But someday soon.  This is where the whole "lack of ability to plan" makes my head spin.  I need a schedule people.

Right now:
He is in the process of getting on the transplant list.  I'm sure there is an official name or term but I don't know what it is.  We'll just call it the list.  He will be listed in the Cleveland area for sure, and possibly Pittsburgh and Columbus.  I am also going to suggest southern Florida and Hawaii, because really we should be able to enjoy the weather while he recuperates.  This could actually take a few weeks or months to formally be listed.  (Translation, we are still going on vacation in March and April.  The polar vortex is more challenging than kidney disease right now.)

Erik is not on dialysis.  I made the mistake of researching dialysis and fully support his desire to avoid it for as long as possible.  The good news is that they do offer an in home dialysis option so hopefully, if and when the time comes, we can luck into that set up.

Erik feels ok, relatively speaking.  He is working and playing and painting.  All of the important things.  As long as his symptoms don't progress or get too bad he can avoid dialysis and nothing really has to change.

The plan:
If someone could actually tell me a plan, preferably with spreadsheets and highlights and color coded tabs, I would be thrilled.  We have a general plan but of course no time frames.

Live donors - We will investigate our option for live donors.  Obviously this option allows for planning and scheduling.  That is my love language.

Cadaver donors - A cadaver donor can take quite a while.  This is where the whole list comes into play.  Though this option allows for no planning and limited notice it may be the best option.  This type of transplant will allow for a pancreas transplant as well, which means Erik would be diabetes free in addition to having some new cool high functioning internal organs.  The plan right now is to wait out this option.  People can remain on a kidney transplant list for up to 3 years.  However, we learned this morning that a kidney/pancreas candidate gets some priority.  I can think of far better lists to be included on as a priority member, but this way a transplant could likely occur within a year.

Combined donor - There is also an option for a live donor kidney with a cadaver donor pancreas.  I don't know why one would choose this option if you still need to wait on the list, if it would require one transplant or two separate transplants etc., but we only heard about this earlier today and one of us didn't ask for any details while he was on the phone.

So now we wait.  He will have some appointments here and there and i'll update as we learn any new information.