So for any of you who follow my posts here is an update:
Went for my right heart catheterization yesterday, upon arrival my blood pressure was 84/54 which is about where it has been hanging out over the last 4 weeks, despite going back to the lowest dose of entresto 2 weeks ago. My heart cath revealed a Fick cardiac index of 1.5 and 1.75 by thermodiolation. My heart pressures were all extremely low, one was nearly 0. So....
I was admitted to start milrinone infusion and monitoring, they also D/Cd all my heart meds (ivabradine, furosemide, entresto, spirolactone, jardiance).
They started me on a .125 mcg/kg/min constant milrinone drip at around 2pm. By 7pm my blood pressure was up to 112/75 which is awesome for me! It dropped a little overnight but then increased to 100/70 this AM. I woke up with warm toes and fingers for the first time in 6 months! I forgot how comfortable it is to have warm toes!
We are now doing an up titration (I am at .25 mcg/kg/min now). The transplant docs hopes are to get me up to a normal dose while maintaining an adequate blood pressure, which for me can be pretty low so above 90 systolic is the goal. Then I will get to go home on infusion therapy (this was news to us that I could go home while getting milrinone and a huge relief!). Hopefully I will be home by Friday, Monday at the latest.
Currently he does not want to put me back on any of my GDMT meds, he wants to let the milrinone do its thing and avoid my pressures dropping. I am already getting some mild peripheral edema from not having the furosemide but he says we will just need to monitor it.
When I arrived my creatine had jumped up to 1.12 from 1.00 two weeks ago and my GFR had dropped from above 60 to 54. As of last night the creatine dropped back down to 0.85 and my GFR is back above 60. He thinks that the increases were most likely due to low fluid status exacerbated by low cardiac output. He doesn't think there was any permanent damage from low tissue perfusion. So it sounds like at this time I may not be able to tolerate and diuretics, good news is things went back to normal very fast!
They are getting in touch with my insurance to find out if transplant assessment is covered through their facility and if it is he is going to get that process started as an outpatient which is also fantastic news to me (going home is the goal).
I am excited to see how I feel moving around and doing my ADLs, maybe I will be able to mop the floors again?!
My only concern is "What if my cardiogenic shock was only caused by dehydration or the diuretics? Does this mean I am on milrinone when I don't need to be? How do I know since they stopped all the other meds at the same time?
I trust my doctors but I just want to make sure we aren't starting an advanced therapy before it is needed, although I think my doctor is aiming for better quality of life right now (since the other meds were tanking me).
I apologize for the long message, just wanted to update everyone and see if anyone has any expierience with this type of journey or knowledge on the topic? Anyone else been placed on Milrinone home infusions? If so what was the expierience like? Did they stop your other meds, did you feel a lot better, were their complications? As always I know I ask a lot of difficult questions but I don't need precise answers. Just thoughts and support are welcome as well, yesterday started out as a big bummer when I found out how low my cardiac index was! My mother says that this is all good because it is a step closer to a new heart, but she can think overly positive sometimes.
i hope this message finds the rest of you well! Feel free to PM me too, I am bored sitting in a tiny hospital room for several days.
You know you're wired when...
You can proudly say youre energy efficient.
My eight year old son had a pacemaker since he was 6 months old. He does very well, plays soccer, baseball, and rides his bike. I am so glad he is not ashamed of his pacemaker. He will proudly show his "battery" to anyone.