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.



So pleased to hear from you

by Gemita - 2021-05-19 16:26:46

Dear ASully,

How lovely to hear from you and to know that you have got warm fingers and toes.  You must be feeling better already.  I hope everyone is looking after you and you are not getting too bored in hospital.  

I am with your Mom and see this experience as real progress for you, something that your doctors need to work through to try to rule in or out a treatment plan.  Now stop thinking that your cardiogenic shock was only caused by dehydration and diuretics and blaming yourself for being so ill and not entitled to be a ❤️ failure patient.   It doesn’t matter how you got here but it does matter how you move forward and it sounds to me as though your doctors are leaving no stone unturned.  Try not to analyse your situation too much.  I like the idea of stopping so many meds and perhaps slowly reintroducing them or new ones so that you will know what works and what doesn’t.  That is how I see it ASully.

I do not believe your doctors would have started advanced therapy without their being a need or without any prospect of any improvement.  After all your heart pressures were found to be extremely low during your catheterization and already you have seen real progress by a stronger blood pressure, improving blood flow to your hands and feet.  

I hope your right heart catheterisation study gave your doctors lots of valuable information and that it wasn’t too uncomfortable for you.  I know it can be and I suffered a pseudo aneurysm following my left heart catheterisation some years ago.  Anyway, you have taken an enormous step towards the next chapter of your journey ahead.

I am so glad you can continue infusion therapy at home and you will soon be able to leave hospital.  You will have to explain how that works.  Will a nurse attend daily?   I am also happy that your doctors are getting in touch with your insurance to find out if transplant assessment is covered through their facility and if it is, they will get the process started and you will attend as an outpatient.  You have moved forward and I am sure your Mom is proud of you.  I certainly am.  You are one very tough young lady and you deserve to be well.

Gemita xx


by Dixie Chick 65 - 2021-05-19 16:48:44

Just wanted you to know that I enjoy reading your posts and glad to hear you've got warm toes again ! Your positive, upbeat updates are good to hear. Hope you have an IPad or laptop so you can enjoy some diversions.

Keep the updates coming...


Best wishes to you!

by Pharnowa - 2021-05-19 18:35:28


I have no information that would help, but I admire, and am inspired by, your perseverance in the face of many challenges. So thank you for that 

Best wishes in getting home and proceeding on your journey! 


Add My Best Wishes Too

by Marybird - 2021-05-19 19:11:39

Hi ASully,

I can't offer any information either, but just wanted to say too that I admire your courage and positive attitude gleaming through all those problems. I think this can only help you in your journey to getting better, and lots of people are pulling for you. Lots of thoughts, prayers, positive energy coming your way.

All the best, Mary



Thanks for all the prayers and words of encouragement!

by asully - 2021-05-19 20:49:01

It has been a bit of a roller coaster ride, scared, relieved, feeling sick then better.  Knowing all the things that lie ahead over the next several months to a year!  It finally really hit home for my other half and he has been a mess.  Things just for more "real" for both of us.  We are working on getting some more services in place to help me with small daily chores and errands the social worker has been a huge help with that stuff.  It is going to be weird having a nurse at the house 2 times a week to check my pic line and change dressings.  It's hard to imagine being end stage heart failure at age 34!  The staff here have been so kind and helpful so I'm crossing my fingers my insurance covers this facility for transplant services.  Next step is deciding if I want to upgrade from crt-p to crt-d, it was already on the table but now with confirmation of low cardiac output and 24/7 inotropes I think it is even more important to consider.  I'm curious if after transplant they remove all my devices?  If that happens do I get to stay in the club lol ;) you all are a bright light on my dark days!


After transplant

by AgentX86 - 2021-05-19 22:22:16

I don't know what the rules are for this but I think we can make you an honorary member or perhaps member emeritus.

It's really good to hear (odd thing to say) that you're moving forward finally.  Your attitude has been amazing and we're all pulling for you.  It seems that you're going to have to help your SO through this, too. 

Please stick around.  We're all pulling for you.

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Microwave ovens make you spark.

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