Upgrade to CRT-D tomorrow!
Another update to y'all,
I am trying to write all this down in posts to keep those curious up to date and also in hopes that if anyone ever goes through the same process I have they can have some expieriences to reference.
We are now just waiting for my insurance to approve my "transplant assessment". Which at this point is more of a formality than it is about getting the tests (most of them I have already had done). Goal is to get me listed in the next 4-6 weeks.
Meanwhile they have placed my temporary "permanent" (oxymoron I know) PICC line for my constant milrinone drip. They are working on scheduling still with home infusion services to get me on a mobile pump and home. But I know have my "turbo boost juice" lines in place at least, time to get used to them!
The EP department was looped in today on my new status, and within a few hours I was scheduled for surgery tomorrow to upgrade me to a CRT-D. At first this AM we thought I would be going home with a temporary life vest until we decided on ICD placement but they had an opening tomorrow so we are just gonna do the quick swicharoo while I am stuck in here waiting for home infusions to be set up.
Sounds like since they want to do as little surgery as possible right now with my current delicate balance they are going to use my abdominal pocket that I have had for my last 3 devices. Unfortunately the CRT-D is about twice the size as my CRT-P which is already having trouble with protruding because it rests against some of my ribs. They are going to put some kind of "sock" lol that's literally what the guy called it, or cushion I guess around it to help keep it from causing too much discomfort. Since my device will be temporary until I get a transplant (or kick the bucket lmao) they aren't going to bother with a plastic surgeon. So I might be rocking an awkwardly placed unit for the next year lol (but they all get removed at transplant). Not too concerned about the procedure but since I already have one awkwardly tunneled lead they said they will just have to wing it and they say they will try hard not to pop my breast implant eeek. I am pretty sure we are sticking with Medtronic since that's what I already have and seems to be this facilities go to. I am glad I won't have to go home with a life vest as that would have just been one more contraption to deal with in addition to the new infusion pump.
It's been a busy morning with docs, nurses, techs, consults all day including a brief visit from my star mitral valve surgeon. He had caught word of my status and popped over to just say hello and let me know his team is praying for me! He is a sweetheart, and I am sure bummed we didn't get the results we had hoped for. I thought it very sweet of him to take the time to stop by when he has plenty of current patients to visit.
Had a chance about 30 min ago to catch the fiancé up on all the news from the morning and told him to stay home today (its a 3 hour round trip drive with no traffic) and get some much needed rest.
I have a fantastic social worker assisting us in getting some home support services approved like light housekeeping, errand assistance, and some premade meals. My other half can do it all but I think if we qualify for the help now why not take some of the stress off.
Updated several family members, which is a pain having to explain it all to each one. Worst was my father with advanced Parkinson's who has severe cognitive decline similar to Parkinson's. So that big hurdle is off the table lmao! My mother is calling in my big sister to pitch in on monitoring my father (my folks are long separated and remarried), but I live closest to my father and have been the one keeping an eye on his status. My big sister is currently staying with my mother who said "this is not the time for you to be worrying about your Dads health when you have your own stuff going on. I was appreciative for the family support as my situation is rapidly changing.
Ok at this point I think y'all have almost every little detail lmao! I have been in good spirits until about an hour ago where I just started feeling overwhelmed and like a stuck pig (so many tests etc). I will let y'all know how the CRT-D upgrade goes, and I will try and snap some photos for anyone who has not seen what an abdominal placed device looks like (plus I will get a few kicks out of making a few of y'all squeamish).
Thanks for all the wonderful support! I think I say this all the time but you are my peeps!!!